This video was so nice to watch! I’m 18 years old and was diagnosed only 3 months ago with a rare disease and was put on 50 mg of prednisone. The moon face is ridiculously bad, I don’t even recognize myself and when people look at old photos of me they can’t recognize me either. I have also gained 20lbs, which for me as a 5’3 and petite girl, is rough!!! I started new treatment for my illness and we are now slowly tapering. I’ve been on 40mg of prednisone for a month and just found out we are going to try a different immunesuppresent to try and get off the prednisone since my side affects are so strong. Seeing that you were able to have a positive difference with your moon face once you started getting on lower dosages was really comforting. Thank you! 💕
Yes. Also started with 85mg of prednisone and am down to 25mg, by the end of July 2020 will be down to 2.5mg. Weight loss. Lost a lot of muscle. And diarrhea. 3 hrs of sleep - ONLY every night since April. Already suffered insomnia, but what the heck. And I’m so wired. Then so tired. OCD one minute, apologizing the next. None of these things are good. None. Nope. Doctors don’t say much. *sigh* ok I think NOW I’m done.
Anybody on prednisone should take t3 to speed up your liver metabolism. This way you will excrete it faster and have less side effects. But not many doctors know this.
Moon face, weight gain, horrible acne, hunger that never goes away, increased depression and anxiety, insomnia and then a total lack of energy during the day, irritability, a shorter attention span, incredibly low self esteem, etc etc. The worst part is that because you have to taper off so slowly it feels like you have no control over what’s happening to you
@@iijamezii408 mostly, but you have to taper off very slowly. The weight you gain stays unless you make efforts to lose it (it is okay to gain weight and often times with Crohn’s or UC the weight gain is a positive thing.) The moon face dissipates after you get off it, it’s due to water retention and unrelated to weight.
I have lupus and I am 15 I been like this for only a year many people bully me because of my moon face and my weight gain I’ve lost so much friends because they just don’t understand
Saad mahmood I started doing better and so I got a lower dose quickly started to lose the weight I never had much of an appetite before I took it life’s great right now I hope y’all do better❤️
My doctor diagnosed me as having a mild case of lupus and these past few days have been painful because I was flaring up with the aches in my wrists and it was depressing for me to just do normal routine things. I've had symptoms long before I was finally diagnosed. I was put on Methylprednisolone but then my rheumatologist advised me to just take it only when I get rashes or extreme cases. If you'd like to discuss more about it I wouldn't mind! But yeah I just need to learn how to get in the habit of handling all my medications and getting over the slumps that come with flaring up because I'll stay in bed for hours and take a lot of ibuprofen that doesn't seem to do much. I get super irritable and moody too. Thanks for sharing your experiences:) it's nice to know we're all not alone and here for each other.
When I was on 50mg per day I could only sleep two hours per night. I'm still taking 5mg per day, I haven't come off since I started. Insomnia and the insatiable hunger were definitely the worse for me. And unfortunately for me, I have gained TONS of weight.
I'm glad you're down to 5mg cause that 50mg is a tough dose! Hopefully you can get off completely. I was on a 5-10mg dose for a good 3 years before I was able to get off of it completely.
@Just Fizzah Same thing happended to me. Take it very early in the morning set an alarm if you have to. This way you'll get the munchies over the course of the day and not the evening. Dont stress about the weight it come off with exercise as your body realizes it dosnt need to store so much fat.
This summer I had a bad flare and went from taking 3 mg of prednisone to 60 mg. One morning i woke up with extreme pain in both my hips and knees and ended up going to the ER. After getting an MRI I discovered I had avascular necrosis in both hips but a lot worse in my right. I had a core decompression surgery on it about 6 weeks ago and I'm starting to feel a little better. The biggest downside is that I'm only 20 years old but I'm glad I didn't need a hip replacement. I definitely also deal with insomnia, moon face and the bruises .. drives me crazy but just trying to stay healthy and positive ❤
I was so confused as I thought it was prescribed for chronic pain. I took it for asthma but I had chronic pain as well beforehand and the pain increased tenfold.
@@SobrietyandSolace it has been proven to be a very effective medication short-term, but yes with chronic conditions it is hard since we are always in pain! Ideally it's meant to control flares then slowly wean off. My problem was I kept flaring after I would taper so I never was able to get completely off until now after about 7 or 8 years of taking it every day. Hopefully you can find the right mix of medicine and lifestyle to help ease your symptoms :)
@@CookieJar350 I damn nearly killed myself after 3 days on it. Was literally broken down in tears in front of colleagues and slashing my wrists up in the toilets. I am literally in a homeless shelter right now because of how badly it fucked me up.Thanks, I hope so too, I just signed up for a pilot ,medical cannabis program.
@@SobrietyandSolace yeah I hear your pain. I was always extremely depressed and unfortunately will be suffering from the side effects for the rest of my life. I hope the cannabis helps! It definitely has helped me 👍 you got this babe
@@CookieJar350 Interestingly the worst of my pain was also in my hips and knees. Sucks, does’t it. I’ve experienced a lot of relief and no aggravation of my asthma vaping CBD flower but unfortunately where I am even that is illegal, so I[m fighting for access because I’ve tried everything else and this has the least side effects, but I don’t want to end up persecuted for it. Thanks for your well wishes and I wish peace and positivity for you, too. Sending internet hugs x
just seeing this now because i got diagnosed a few months ago with lupus. I got diagnosed at the age 11 🙁. Ive been on prednisone and i have moonface and been experiencing weight gain. These symptoms made me lose so much self confidence. I look myself in the mirror and i cry. i hate how i look. just wish i never had lupus😕.
I am having lupus too, and right now I am experiencing a huge acne on my forehead. I just hate it so much. But, let's hope things will getting better. Keep fighting 🔥🙏👍
Hey, thanks for making this video. I’m 12 and on prednisolone until February. I just feel like I really need someone to talk to about it. Whenever I go to school people always ask me why my cheeks are so “chubby” or why I’ve gotten so “fat”. Good on you for making these videos❤️ I’m sure it’s helped many more people, including me. Stay strong🌸
sAd vibes yea once they lowered the meds the acne goes away pretty quick and you might get a lot since u have a short period of time... just use sun cream because i got some dark spots from the sun and acne. Hope all the side effects and not so bad for you I wish u the best ! You can do it >:-0
I have a rare blood disorder in which the only treatment is either regular blood transfusions or prednisone. I'm 23 years old now and have been on this medication for my entire life. It's strange to even acknowledge the effects as symptoms of the medication, as they've been my normal for as long as I can remember. It's comforting to know other people are going this; I've lived my life feeling very alone in this regard. Thank you for this video! It has created a sense of community for me that I didn't even know existed.
This is very helpful!! I feel exactly the same!! With the “oh yeah I can do whatever I want now..” then change to “wait why I always woke up at 3-5am, only sleep exactly 4-5hrs”... to “wait what happened with my face? It’s so puffy and many acnessss!! I eat clean food and walk more but it looks as if I gained 5 kgs!” Thanks for sharing this.. I dont feel alone anymore :( Oh, I’m still on 16mg twice a day for 2 months. Hopefully to get rid of it soon.
My cardiologist started me on a 40 mg dosage back in October due to a diagnosis of sarcoidosis affecting the heart. I was hesitant to start on it because I'm diabetic, and I knew the damage it could do with blood sugars. I kind of got that under control for a while, but now it's spiraling out of control. I started retaining fluids like crazy, and gained 40 lbs. by December. I finally told my cardiologist I couldn't deal with these side affects any more. Now I'm in the process of weaning myself off of it and going to methotrexate. I've been on oxygen since last January - now my breathing is getting worse due to all the fluid and weight gain this crap has caused. I wish now I'd never heard of Prednisone - this is some nasty stuff. I've basically blown a whole year's worth of progress by being on this stuff just a few months.
I was diagnosed with dermatomyosities 11years ago. I have been taking prednisone ever since. I started off on 55mg. I am currently on 5mg now. Last year I became neutropenic due to the other medication (methotrexate) that I have been on. It was stopped and not replaced with anything. Im doing good. Just Wednesday I was taken to the ER at the hospital I work at( im a nurse with an auto immune disease) due to experiencing chest pain and palpitations. I can relate to this video so much. Stay strong. We Are Warriors.
16 year old leukemia patient here, post stem cell transplant, I have been off of prednisone for about 7 months now after being on it for around 8 months and I was just put back on a 120mgs a day dosage.. to say the least I feel like I have lost and I am terrified of what prednisone will do to me this time. Expect stretch marks, horrific acne, emotions that are impossible to describe aside from just dreadful, of course I'll be blowing up like a balloon again. Prednisone has honestly been one of the hardest parts of this whole journey for me, it ruins your confidence in every way, it destroys your image and feelings for yourself. You don't feel like yourself, and you don't look like yourself, it's the worst feeling ever. Good luck everyone, keep going and try like hell not to give up.
I've had the worst acne I've ever had since I started the medicine. :( it hurts! I'm the same as you where I normally don't get acne, except maybe just a pimple here or there... my face is covered. Thanks for posting this cuz I wasn't sure if I had something else going on.
The only thing Prednisone did for me was suppress my allergic reaction to an antibiotic. I've only been on it for a little over a week and slowly tapering off. I did start at 60 mgs. However, I have literally dealt with every symptom mentioned and then some. Like the moon face is in full effect ☺️ acne on my chin and on my brow stretching across my nose. Insomnia which is a laugh because I'm literally so tired, thinking about going back to bed all day! Bones and joints are hurting!! I'm so up and down in my mood I feel bipolar. My anxiety brings me back to when I was child and was unable to control my panic attacks. Other days, even with feeling nothing, I feel it fully. I feel so bad for anyone who has to live life with this drug. Totally new found understanding with people who have to adapt to life like this. I'm very anti-pharmaceutical, so I only take pills WHEN it's an absolute. I def see why because as it does help, nothing in life is free 🤣 To anyone who is still reading, you are not alone! This drugs side effects are awful 😞 hopefully you can find some comfort in knowing other people are out there experiencing similar symptoms. It'll be okay and if you can, find another drug lol 😂
Teared up while watching this you basically explained how I felt my last 2 years of high school. I didn't even want to go to prom and refused to ever let anyone take pictures of me. It was sooo bad the endless stares and questions like, "What's wrong with your face?" ughh worst time of my life but have to be thankful everyday that I am alive and well and no longer taking prednisone. I am now 20 years old and my lupus is in remission, I have learned to appreciate life and health a lot more since the day I got admitted to the hospital at just 16, to never judge a book by its cover because you never know what a person is going through and we should all be kinder to one another. Thank you for this simple, but so relatable video really makes me feel less alone like someone else out there knows what it was like and i'm not just crazy lol
Meztli that is so great to hear that you are now in remission! Enjoy your love life but like you said watch your health. High school isn’t an easy time to be on prednisone. I had it bad at 16 too. Best of luck!
Rant Alert: My boyfriend of nearly a decade and I broke up a few months ago and over the last two months I've had to go back-and-forth to Chicago to more times to get more stuff and see my rheumatologist and last week was my last visit with him. Today, I went to what I was hoping to be my new awesome rheumatologist. I hate it when they start out with "I doubt you even have lupus" when you've had it for 12 years. I'm like do I need to bring in photographs of my face when I'm in full rash mode? I don't understand. I know my blood work if you look at the numbers and everything when I first got sick it actually screams scleroderma- but it was lupus. I have the full perfect malar rash and I had a rash from head to toe that has left me scarred on my legs is with bruise like mottling. My grandfather died of lupus in the 1960s while doing testing so that they could use prednisone on us now for it, back in the 60s. He participated in studies with experimental doses of prednisone and he died from it so every time Itake my prednisone for lupus (which I got more of to start today and another burst) I always quietly think my grandfather for making a sacrifice for us. The sky was screaming fibromyalgia before I was in the room with him for two minutes I absolutely hate that when you have lupus you know I mean you find all the little signs if I stop my Benlysta infusions, I will get nose sores in mouth sores so big that you'll be able to see them looking me straight in the face. And as shitty as I feel now I feel 10 times worse. I'm just so frustrated because it never goes right with a new doctor my doctor in the shit in Chicago was also a pain specialist and he was very understanding. Now, I have been slowly coming down off of the major pain medication but this doctor does not even prescribe Percocet. He acted like I was a drug addict and that really made me mad because I'm allergic to NSAIDs. If I could manage this with anti-inflammatories I would be the happiest girl in the world. Just once I want a Doctor Who has lupus I had a bed there aren't any that exist. I also have another problem which is a serious case of degenerative disc disease and I have apparently shrunk 2 1/2 inches so I think I need to go see a back doctor as well there's a lot going on with me I just I don't want someone to just hand me pills I just want somebody to understand a that I do I have lupus and being that it hurts like blankety-blank. I am the one taking myself off the meds so I don't know why I got treated that way I'm gonna go back and see what he says after he looks at my blood work and then he may or may not be fired. Anybody else had trouble getting a decent doctor? I mean it's not like it only takes us 15 years to get an accurate diagnosis, you know on the average or anything. i'm sorry I just had to vent and I figured somebody here would have had similar experience. Thank you darling for having a forum for us when we have a bad day too because I didn't know where where else to go when I came home in tears-this is the group I talk to.
watching this video made me feel like i was a little less alone on prednisone, along with a lot more insight and things to keep in mind. i was diagnosed with chronic costochondritis in 2016 at age 14 along with fibromyalgia in 2019 at age 17 and have been on prednisone 5mg for around a year now and it fucking /sucks/. i frequently have to go on dosepaks because my rheumatologist loves to not fill enough of my meds so i have to get my system back in the loop which is absolutely great!!!(/s) my main adverse symptom ive noticed in the last 3-4 months is acne, so i see a dermatologist to manage that along with another condition i have. i've also had some issues with mood swings, especially when i'm on my period as an afab person. weight gain and moon face has actually played in my favor(which is kind of weird to say) because i have issues with hunger cues and gaining weight along with taking other meds that have adverse effects of weight loss so it helps my face fill out. i'm still working out other treatment options to help my costo mostly because thats the main source of inflammation in my body and i am not able to take nsaids so unfortunately it's something i have to take to keep myself in working order. if anyone else with chronic costo and/or fibro has any tips to keep themselves functioning without excessive meds i would love to hear it! stay well, friends❤
I do hate prednisone. I get massively depressed along with the other side effects. Worried because I have been having unexplained fevers, joint pain and sores in my nose that take forever to heal. I have Sjrogens ... I can't even spell the word, brain fog huh? I have an appointment wth my new rheumy..Thursday. 🙏🏻everyone is doing as well as possible.
Ive been watching these videos on lupus and im somehow a bit relieved that Im not crazy or weird its just how this drug works...i was at 40mg everyday and now its 5mg every alt day bt i still have a humongous moon face and fat belly...i feel so depressed and angry..and hungry..hopefully i can get off prednisone forever soon. Also thank you for this video. Thank you a lot!
I’m on 60 mg for two weeks, recently had to increase. I feel like my face is getting fatter every day. I’m addicted to turkey sandwiches and I’m up everyday at 6am. Send help.
I just started a 5 day course for my asthma. My stomach is killing me and I can't sleep. This is just day 2 and I can tell the difference. I usually have a 14 day course but the last time I gained way too much weight. I will be so glad when this is over.
Oh man I haven't been on prednisone in years. I'm fortunate enough that I haven't had to go back on it yet but my most prominent side effect was insomnia and I became completely nocturnal. Since I was in university, I could only see family doctors at that time and none of them believed that my sleeping problems were linked to the prednisone and I didn't have that information available to me either. Thank you so much for making this video! Past me would have found so much comfort knowing that what I was going through was normal for this drug, and that there were other people out there going through the same thing that I could have reached out to.
My brother has been badly effected by this medicine, he cant sleep at all only getting 1-3 hours sleep every night for half a year now. He needs help. What did you do?
@@maryfonoti1166 I'm so sorry that he's going through that! I finally managed to talk to a doctor who understood and gave me a prescription for sleep medication. I started gradually shifting when I would take the medication and go to sleep by about an hour each day, and eventually got back to a point where I was more awake during the day. The sleep medication also let me sleep for longer chunks of time, which helped a lot. That was just my experience, though!
Rebecca Lees the thing is hes not even taking prednisone anymore for half a year now hes tried slreping medications but nothinh seems to work, do you have any reccomendations?
@@maryfonoti1166 I mean, for me, I started really purposefully creating a "bed time" environment whenever it was that I wanted to sleep (even if I didn't feel like it before taking the sleep meds) and I created a winding down routine to help trick my body into relaxing. Stuff like setting up low lighting and not using anything with a screen for at least 30 min before taking the sleep meds, giving myself a hand or foot massage, etc. Generally stuff that indicated to my body and brain that it was time to rest. I also found some meditations super helpful? Like ones that specifically guide you to sleep.
I’ve been on 60mg everyday for 2 months I gained so much weight on my stomach+moonface. As a 15yo girl I’ve never felt so insecure with myself. I look through my snapchat memories from when I wasnt taking any medication or treatments and I looked so pretty, I just want my old body back.
@@dayanara6139 Hi. Did your moon face went down with lower dosages? I started with 30 mg a day and now I’m on 5gm a day and wondering if this low dosage will get rid off my moon face
Made me skinny fat and i hated my body. Depressed and super short temper. People would make fun of how i looked and i started only drinking vegetable juices for 3 months and cut down body fat. I was always paper thin and very underweight since i was very young because of crohn's disease. It made me self conscious about my eating even though the reason i was fat was prednisone. 3 years later after a flair up i was put onto an intense prednisone cycle before a seton placement surgery. I am currently one week after my surgery and the 3 setons i had installed don't hurt as bad as the 2 inch long 1 inch deep hole between my asshole and scrotum. Ive had an abcess and multiple fistulaes for over 8 years now and the fact that ive been wearing period pads all the time to make the puss and blood less uncomfortable to walk in at all times is really annoying and humiliating. Those abcesses and crohn's symptoms made me miss all of 5th and 6th grade and i had tutors come in everyday. But yeah anyways back to prednisone i have constant mood swings and always feel like i wanna kill someone, thats because i never let out my anger so these meds make are like the match in front of a pool of gasoline. I train super hard everyday and love the way i look but i'm always scared that i'm gonna look fat again and mess up all my progress because of this horrible steroid. Anyways that was my lil rant about a few things that bother me about my health situation. I could seriously write a novel about all thats wrong about my health. I'm not saying i'm the only person on earth going through shit but i just need to vent right now. Hope all is good with you stay strong❤️
Hi, my daughter was diagnosed with lupus 7 months ago. It was hell for me to accept that as a parent. I cried like every night when she was hospitalized. The 1st time she had a pleuritis and 2nd time a pericarditis. So she had to take prednisolone tab 2 times 30 mg daily. I saw my little baby girl (changing) starting to get bigger (fat) because of the side effects. She started to get lots of foods (every time she gets hungry), her face starts getting to look puffy (moonface), and lots of acne. Luckily her blood glucose levels stayed normal. I still feels very sad when I am alone and looking pictures of her from back then and now. Before being diagnosed she had complaints of joints pain for nearly 2 yrs. Now she still uses prednisolon 2 times 10 mg. But still have those hunger feelings. I am now in the process to accept her illness and talks a lot with her to be mentally stable/ strong. She means the world to me and I am very thankfull that you gave lotts of info. You're a very beautiful lady, but some times you don't know what is hiding behind a beauty. Thanks a lot... Stay healthy and keep up the good work.
wong iring you're daughter is very lucky to have such a supportive mother. Reminds me of mine. I know seeing your child go through an illness like lupus has to be one of the hardest things life throws at you. She'll get through this. 💜
wong iring Reading this made me cry. Firstly, you are a wonderful & loving father. I wish I had a parent like you. I have had lupus since a child but was not officially diagnosed until age 26...now 47. The pain, the depression & all the side effects from medicine is just too much to deal with but what you are doing is so important!! You are teaching your baby girl to cope with symptoms & side effects. I commend you. ❤️
I've been having shoulder pain. He percribed me this. I'm beyond upset. Didn't say anything about side effects. I've only taken 2, an now im terrified. I can't stop crying.
I'm suffering from rare blood disorder so I'm compelled to take steroids I started takin meds 2 months before & now I'm on 5mg per day only positive effects of this medicine,what I observed are:Activeness,potential to do anything,High focus/attention I also got some side effect i.e Moon face,acne,insomnia,mood swings & craviiiiiiiinngs, but I enjoy these changes ,I enjoy my food and eat whatever aen howmuch I want cuz I'm not gaining weight♥ I enjoy the different comments of ppl on my face yeah!! I must enjoy cuz its my life & I don't know how long I've to take this medicine.
I got diagnosed with lupus November 2019. I’ve been on prednisone 5x times so far and I HATE it lol. I felt weird when I did: insomnia is true, increased appetite (although I’m skinny, this wasn’t too bad), restlessness in my legs, my skin peeling where I had the races at. It’s the worst
Hello and hugs to fellow Lupi. I have been taking Prednisone off and on for over 20 years. The worst side effects have been at higher dosages or daily doses. The "shakes " was the worst. When I am having a more sever flare I sleep a lot even on Prednisone. People can be very judgemental. They wonder why you would ever take prednisone. For my doctors this is a LAST resort. So, if they see your other meds are not working, inflammation increases....then it may be a necessary evil. The weight gain after all these years is definitely a bigger battle. Really appreciate your videos and positive attitude. Thanks for listening.
Oh jeez! My doctor put me on prednisone 2 days ago and i am nervous to even go pick it up from the pharmacy. I have had swollen hard lumps on the back of my neck and head and side of my neck. I woke up this morning scared because 2 new lumps developed overnight. My doctor didn't even bother to examine me or touch the spots of concern. She instead gave me a antibiotic and told me I had folluculitis.. I finished my meds and no budge! The meds didn't work so i went back due to the pain..and consistent swelling. A diffrent doctor examined me and looked at me like if I was crazy when I told him my folluculitis was not getting better..he told me that it was because I had swollen lymph nodes and not folluculitis. And I should come back if it doesn't get better. So I said it's been 2 weeks since I had last came and got diagnosed but before then it's a total of two months. He was surprised and sent me for ultrasound of my neck and head. The lumps are the size of a peanut or bigger. A few are the size of a small grape..and it's bothersome when I lay down. My ultrasound test are showing that my lymph nodes are benign... and that's all! Wth! My doctor calls me to tell me there is nothing wrong and tries to leave it at that. I argued that they needed to find out why I have 10 lumps on my head and protruding out of MY neck..is it cysts ..infection..cancer..swollen lymph nodes? I feel like crying at this point. Because I get the worst anxiety under stress.. I can't sleep or eat..my anxiety is so bad and the constant pain is causing insomnia. My doctor put me on prednisone to help with whatever inflammation of whatever I have..they don't know..and don't seem to care..during my visits they usually look at me and ask me if I need to "talk to someone". As in a psychiatrist! This is because when I am in pain or sick I go to the doctor and I get nervous and anxious ..mostly because I wait till the pain is bad ..because of fear of them judging me! I have to be my own advocate and push 4 test to be done..just so that they can discover that I have a thyroid problem! I just want to give up already and just wait for something drastic to happened before I see another doctor. Should I take the prednisone. I had to look up the side effects ..they just threw the script at me ..like take these and leave us alone..i guess it's because my doctor was in the middle of giving an interview to a potential medical receptionist while diagnosing me. Can you believe it! Should I go somewhere else for a second opinion!? Any ideas on what this could be? My labs were showing low white blood cells before this happened about 6 months ago.but my doctor never brought it up as a concern and never checked my whole report.. but I get a copy of it online..every time I get blood drawn I notice my white blood cells are a bit off. But not by much! I haven't checked it recently..i have been to a gyno regular check up pap smear and other test..everything is good. I am not sick..no virus..no cold..nothing.
Hey! I'm sorry you're going through this right now. Many times with medical issues we can be thrown in the dark and it is hard when the doctors don't always know everything. The prednisone would help if it is due to swelling. I'm guessing your prescription is for short-term, in which case you would most likely avoid most side effects. Might get a little hangry and deal with some insomnia but that's about it if it's shorter than two weeks and they wean you off. Second opinion never hurts! It's your health and it's important for you to know. I had swollen lymph nodes before and they were benign as well. They have been swollen for me for years but that is because I have lupus.
When you said you were on 60 mg I just thought to myself “why am I complaining”. It is just soooo frustrating because I’ve been losing weight/getting fit . And now my body just feels like it weighs 10 times more even from just having 20 mg a day for 3 days now.
Just had two cases of fluid around my heart where I almost died twice since my heart was barley beating. I was in the hospital for 15 days once then home then back in for 21. Had to be be air lifted to UCDAVIs. I'm home now and recovering but I'm currently on 40mg a day. I've never been able to come off of prednisone but my doctor had me down to 2mg (which I didn't feel well on, struggled everyday). I have bone loss and weak bones from it , my right shoulder is messed up and I have to do physical therapy at home. I completely broke out and I have the lovely moon face .
jackie kenney You've really been through it! I have had pericarditis and lots of pleurisy before but that's it. I'm glad you're getting better. I know what you mean it took me forever to get off of it. Every time I did I would end up in the hospital. I was in the hospital or six times in two years and it was the two years that I was blown up like a balloon, frankly. I wish you well and that you feel well! 💜
I hate prednisone because I can't not take it.,you body is completely dependent on it which suckkkssssss cause it's destroying my bones. I also hate that when the wean Me off of it even just 5mg at a time I have horrible migraines for days that leave me bed bound
LiveHopeLupus My PCP has me on hydrocortisone right now (have an appointment with the Rheum later this month, we'll see what he does) and is trying to hold off on prescribing prednisone because of the side effects you're describing, but I'm getting worse and I don't think I can go without for much longer. Do you find that you have to use more during a flare? I live in Vegas too and I get SSOOOOO much worse during the summer. (Does anyone else have that problem too?) I'm in the middle of a bad flare that started 2 weeks ago from being in the sun for approx. 5 min and now have to double my dose of hydrocortisone until the flare subsides. I'm terrified the rheum is going to put me on prednisone instead but feel like that might be the only thing to get me back to the status quo.... Thanks for another enlightening video!!
Coming down off 80mg/day to combat erythema nodosum outbreak (have AR, Lupus and Crohn's as well). "Devil's tic tacs," agreed! Never had "moon face" this bad in the last 5 years of daily Prednisone dosage. Thanks for your video! Hopefully this can not only help us, but our family and friends who just don't/can't understand.
Your right on the money girl! Got AVN at 25-same year diagnosed and I was puzzled, I cried got over it then realized I needed a hip replacement all under 5 yrs. This illness, can get better with more Drs. or even people like you or I continuing with research and educating ourselves on diets. Thank you:)
I have 3 lung diseases. Asthma, allergic bronchopulimnary aspergillosis, and bronchiectasis. I started on 60 mg a day for a month and tapered down from there. At 20 now for the last 2 months. I’ve gained 20 lbs, have lost hair, gained 25 lbs, and I have the worst moon face ever!!!!! I’ll be on the prednisone for 7 more months. It sucks!!!
Ugh, I really hate this medication. It makes me anger easily and screws up my sleep. None of these things are typically mentioned by Drs. Just trying to stay on top of all this things on top of all the costs is very depressing. I feel so bad for all of the young people suffering from Autoimmune diseases. My symptoms started around my 40's, I'm 53 now. I'm also wondering how everyone's coping with all the additional stress from our country's current insanity. 😲 It can all be too much! Sorry to get political. Balancing continual rising costs of medicine, food, etc and living in a state that doesn't allow me to get any help really makes a bad situation even worse. Having to decide which medications I can afford month to month adds additional stress. Thank You! all for letting me rant. Praying for all my brothers and sisters struggling with these issues. Much love 🌸😘
Ugh prednisone. Cravings, moon face, temperature irregularities one minute cold next minute sweating buckets, mood swings, insomnia, peach fuzz on my face.... Just lovely... NOT!! I pray that I never have to go on it again but..... I think it's going to be happening again soon if my symptoms don't settle down.
Ive never had such bad acne in my life all over my face ive even got it all around my neck also my chest and my back was unreal large cysts and taking antibiotics right now but seems forever for them to clear
Thanks for video. I took prednisone 15 years ago and discovered all the symptoms for myself. This time round I was much more aware of what to expect and when I found this video I was pleased to know other people experienced the same as me so I am not alone. Friends have laughed at my comments or said noo don't be silly so it was great to send them this video and say this is how it is! Thanks for sharing:)
My mum is on this medicine and has become completely bedridden with pain in her legs and weakness so bad that she can’t move at all. She’s been taken into hospital, please tell me this will pass
I have MS. Over fathers day weekend I had a flare up and went to the ER. The physicians assistant did a 1100 mg interveniously and send me home with a prescription for 1250 mg a day for 6 days with no taper period. I experienced Adranal Crisis Syndrome the next day after stopping my last dose. She almost killed me. This was 1250 mg of Prednisone A DAY! Anyways, three days of my body going through hell, I called my PCP and he put me back on Prednisone taper for 21 more days! Ugh...started with 120 mg a day and went down from there. The side effects are no joke! I experienced every side effect mentioned. Its hell! I'm off of it now and cant wait til my body recovers.
im 30 years old I started with 50 mg I’m dosing down now been on it for almost 3 months.. I had the mood swings I’ve never had an acne issue I’ve got acne all over my back and arms like nasty white puss that Pop soon as u squeeze them I got the moon face round face I gained over 20 pounds I can eat anything when ever what ever.. I’ve got insomnia I’ve felt depressed I’ve ranted and said things on social media on topics I wouldn’t normally say or talked to people who I shouldn’t be talking to it has messed with my hormones dramatically such as being in the mood all the time but other than that it made my sickness go away temporarily . I was diagnosed with myasthenia gravis an auto immune disease that attack’s neuro and muscular system
I've been on prednisone for 9months and I'm still on it, I get weight gain but I don't mind as I was under weight and mood swings I actually did not know that prednisone causes that until now so thanks. Can't wait to stop that medicine.
Dang. They haven't yet figured out my problem, but Lupus is currently the #1 contender (final results in 6 weeks). I was on the Pred. from October to February, but have temporarily come off. Prednisone was cool for like a week. Then: sweat like sauna getting revenge, eat for an entire pregnant army, rage like hulk monster sometimes. I already slept like 5 hrs a night, now I go with no sleep 1-2 nights a week. Things that helped me: ASMR, herbal tea, ice bath, some vegetable to snack on endlessly (carrots), a punching bag and prayer.
After you're off the meds how long does it take to get rid of the moonface and does all the weight you've gained go away with the moonface or do you have to get rid of that yourself?
Took Prednisone for asthma. Ended up having my employer call the police and an ambulance to remove me from my live in job after a mental health crisis as I’d not slept in two weeks, was self harming, had suicidal ideation, had insanely worsened joint pain, became massively bloated, kept passing out from hyperglycaemia after eating anything at all (that and the weight gain made me stop eating as I was relapsing into anorexia-brain), I couldn’t string a sentence together or understand what was going on around me half the time and now I’m in a homeless shelter. I told my doctor about my fears before taking the drug and they didn’t even give me the follow up email promised to find out whether I’d fucking killed myself yet!
I take 10mg. Prednisone taper for about 2 weeks to get rid of poison ivy about once a yea because I always end up getting it on my eyes and what not. Everytime I take it it's the best my skin ever looks. After 2 to 3days my acne clears up on face and back.
Ah even as a guy the moonface makes me incredibly self conscious. In a world where all guys are magically supposed to have chiseled jaw lines I just don’t have time for this😂the thing is,I’ve been on prednisone on and off my whole life, or 22 years (I have cystic fibrosis) but started it at a much higher and constant dose in April because I had a double lung transplant. Anyways, first time running across your channel and you carry yourself very well and are really informative, I hope this helps a lot of first time users or veterans who just don’t want to feel like they’re going it alone! Good work!
The struggle is real! I feel you. I have ulcerative colitis and I’m currently on 60 mg everyday for 2 weeks and from there 1 pill off week after week. I am going through what you’ve gone through and I thought maybe it was the stress but no! I searched it up and it was the prednisone making me feel out of sorts. Well, I hope you get well soon from your current condition. Take care.
Predinisone has been wack! The acne is horrendous, messing up my once regular menstruation, severe joint pain, moon face has been real, and I went for a walk and my legs were shaking after... FROM A WALK! But I tell myself that all these side effects are temporary and we gotta do what we gotta do to get better.
Just starting take 60 mg a day and I feel like I am going crazy. Mood swings, no focus, anxiety, and also chest pain. I'm really hoping that I don't gain any weight from this drug
Prednisone almost killed me and 10 months later I feel awful. No longer taking it still suffering. It destroyed my kidneys. I told my doctor I could not eat from pain and she didnt think that was a big deal and kept prescribing the prednisone.
Moodiness, moon face, acne, trouble concentrating and insomnia.....uff. I'm just lucky this is a 2-4 month round rather than a continuous medication for me. :/
Doc put me on 20mg for my RA and I felt GREAT... then acne, doing dishes at 3am, cruising Facebook afterward... all that. He knocked me down to 5mg and started me on Actemra. Today I got his ok to stop the prednisone as my heart felt like it was going to bust out of my chest! We shall see what comes next. Great stuff but yeah, I hate it! 😡👎
I was starting to wean off of my 60mg dosage and then I got to 10 and stuff started again so now I’m back up to 25 and I resent the way I look. It’s hard to look at myself in the mirror and feel any sliver of happiness anymore, and none of my friends my age understand and the internet makes me feel like it’s all my fault and that I should have taken steps to avoid it. And when I was on 60mg I also couldn’t sleep, getting like 3-4 hours a night. But the really bad part for me has been the moon face and weight gain definitely
I've been on prednisone almost continuously since 2012. Only had maybe 6 months here and there total off of it. Right now I'm on 5mg daily after a lupus and polymyositis flare that started in Dec. Tapered down from 40mg. I do take calcium and vitamin d3 daily as well. I don't have osteoporosis but osteopenia, so that sucks. I'm not sure what other damage it has done but it works so well for inflammation.
i’m on prednisone right now, not for an auto immune disease or anything, just some severe tonsillitis, and i feel terrible. i’ve been eating so much, i can’t sleep, and i’m too dizzy and shaky to go to school. it’s terrible. i’m only on it for a few more days but i could never imagine taking it long term. my muscles are sore and swollen and my heart rate is irregular. ugh.
Lucille Kohtz hi Lucille, I hope you’re feeling better now! Just wanted to find out how long these symptoms lasted for you? I only had to take prednisone for 5 days, but am feeling awful from it, and have had a lot of the same symptoms as you for about a week now. Any insight you could give me would be really appreciated. Thank you!
I had throughly sleeping at first . It’s been a year and now I can take it and then sleep like a baby ! I hated the moon face !!! And weight gain ofcourse . But food never tasted sooo good when ur on that stuff. The worst for me had to be the Hair loss. I was on 60 mg and then got tapered down .thats when I started losing my hair and I had hair up to my waste and it was nice and thick . I guess there’s other people that have it way worse . But that was the worst part of taking prednisone for me . I don’t remember experiencing acne problems with it
I’m so glad I found your video! I recently got a flare and back on prednisone which I haven’t been since I was first diagnosed back in 2008.. and completely forgot about all the side effects it brings. I am honestly not coping well and been in a slump, like you said mood swings, which I initially thought I was going crazy. I also struggled with body image and going back to prednisone ... the weight gain, puffiness and acne is messing up with my mental health. I was wondering if you can share your workout routine/meal plan to reduce the further weight gain & water retention? Anywho, thanks for making this video.
Thank you for sharing I was just prescribed the same dosage for something much more minor than lupus. Always like to double check things before I decide taking them this was very helpful!
I took 60mg for 5months! And I’m having the worse feeling. Moon face. Bloated and big stomach. Weak bones and acne all over the body. And now the Dr has reduced the dosage and its 20mg now. So please help me in knowing will the side effects also reduce or it will be the same… Thank you.
I am only on this short term for a few days for a severe allergic reaction. I slept maybe 4 hours in the first night. Only 5 more to go... Can't imagine being on this long term.
Same here. I had a bad reaction to something last week and am on it short term. So far, I have a face full of whiteheads, moon face, can’t sleep, and uneven skin.
@@PooduhBae it should be improving it. You may not see a clear difference until 5 or 6. If its continuing after that it may be something else. I had pityriasis rosea for 5 months and it popped back up after I stopped using the steroid. Nothing can fix PR. I thought it was heat rash at first. Good luck with yours
I’ve surprisingly have been sleeping great. I started the drug Tuesday night and have felt no side effects thus far. I’m on 10mg which I think is a low dose? I think it’s helping me sleep because I was in so much pain before that I couldn’t sleep, and now that the pain is gone I’m sleeping like a baby. What mg are you on and did they put you on it for a flare? Will they eventually take me off of it?
amanda green 10ml is a pretty low dose. But it can have some side effects but it's mostly irratabilty and hunger. (But it can cause ache) that's the only thing that really bothered me on that low dose. I hope you don't be on it to long lol.
I have autoimmune hepatitis and was diagnosed in December 2012 and my doctor put me on 40mg of prednisone and along with two immune suppressors and another drug called urisodel and playing with dosages over the yrs I am now prednisone free as of June 26 2018 and hopefully can get my weight under control
I'm on 60mg everyday right now feel great right now I'm embracing the chubby ness put on nearly 10kg in about 2 weeks thinks it's mostly water weight I think beats not been on meds for lupus I couldn't even walk last month before I got steroids and mycophenolate told my kidneys are pretty bad but no scarring 💪not getting much sleep and but least I'm back at work, only 23 years old. Docs said gotta hit it hard at 1st
Michael Ross my kidney doc just prescribed 40mg of prednisone and I’m scared to take it. The side effects just don’t seem worth it to me. What kind of kindney issues do u have
Hey I've got lupus in kidneys and joints, I'm now down to 20mg and I've lost alot of water weight I put on. When I had lots of water build up in my feet and ankles I used compression socks and they helped alot. Makes you feel hungry as hell make sure you try to eat healthy haha
im currently 16 and taking prendisone due to me having pneumonia and history of smoking and vaping (yes i regret it now) and this not what i want to do anymore. I've been having a lot of acne on my face, chest and back and it makes me feel so disgusted in myself and i also been having a moon face and i can't stand looking at myself in the mirror knowing i look like this. Im not used to having all these things on my body and its to the point where i don't feel like myslef anymore and all i wanna do is stay in my room where no one can see me and i get so sad and start to overthink. At first i was taking 3 pills a day and now im starting to take 2 a day but the side effects are getting so much worse and i don't know what to think about myself in general but i know i have to take these for a couple more months to slowly decrease and stop taking them completely but it's getting harder everyday and im starting to feel more sad and mad at the world, basically all these mood swings are killing me inside.
I started first fortnight on prednisone treating vasculitis with 50mg, second fortnight on 37.5mg, third fortnight 25mg and reducing 5mg each each fortnight after. I noticed I feel super alert all the time, sometimes it can be good sometimes it can be annoying cause you just want to relax and not feel wired. Waking up super early like 5am and it's a bit harder to get to sleep as mind is racing. Definitely noticed mood swings, have had major high positive moods and then while reducing my intake I've noticed my mood slightly down an I think it's from reducing from 50mg which is a high dosage to 37.5 and now 25. I usually get a red face late in the day like I've been coked by the sun all day at the beach, does any one else get this side effect? I haven't got moon face after 1 month thankfully - recommend exercising daily and eating low carb low sugar diet for anyone wanting to avoid the moon face.
This video was so nice to watch! I’m 18 years old and was diagnosed only 3 months ago with a rare disease and was put on 50 mg of prednisone. The moon face is ridiculously bad, I don’t even recognize myself and when people look at old photos of me they can’t recognize me either. I have also gained 20lbs, which for me as a 5’3 and petite girl, is rough!!! I started new treatment for my illness and we are now slowly tapering. I’ve been on 40mg of prednisone for a month and just found out we are going to try a different immunesuppresent to try and get off the prednisone since my side affects are so strong. Seeing that you were able to have a positive difference with your moon face once you started getting on lower dosages was really comforting. Thank you! 💕
PREDNISONE - devil's Tic Tacs
James Linehan love that nickname for the drug.
Why do they call it that? I just started this med
Lol my doctor didn't tell me any of the side effects at all wow great doctors i go to
I cried with this video... I have and had ALL this minor effects you mentioned. I just wanted to talk with someone who gets it.
I keep feeling like crying
Keep your head up.
yeah, it can be pretty hard some days, I will be 63 next month, and my condition is progressively worse.
Im so sorry. No matter what we are on meds for, it’s never easy. I wish you good health.
Yes. Also started with 85mg of prednisone and am down to 25mg, by the end of July 2020 will be down to 2.5mg. Weight loss. Lost a lot of muscle. And diarrhea. 3 hrs of sleep - ONLY every night since April. Already suffered insomnia, but what the heck. And I’m so wired. Then so tired. OCD one minute, apologizing the next. None of these things are good. None. Nope. Doctors don’t say much. *sigh* ok I think NOW I’m done.
Anybody on prednisone should take t3 to speed up your liver metabolism. This way you will excrete it faster and have less side effects. But not many doctors know this.
Moon face, weight gain, horrible acne, hunger that never goes away, increased depression and anxiety, insomnia and then a total lack of energy during the day, irritability, a shorter attention span, incredibly low self esteem, etc etc. The worst part is that because you have to taper off so slowly it feels like you have no control over what’s happening to you
Yes
Oh my gosh yes.
Will it go away if u come off of it
@@iijamezii408 mostly, but you have to taper off very slowly. The weight you gain stays unless you make efforts to lose it (it is okay to gain weight and often times with Crohn’s or UC the weight gain is a positive thing.) The moon face dissipates after you get off it, it’s due to water retention and unrelated to weight.
How long did it take for the acne to go away after discontinuing it?
I have lupus and I am 15 I been like this for only a year many people bully me because of my moon face and my weight gain I’ve lost so much friends because they just don’t understand
same with me but i had a kidney transplant i use to be really skinny and i was 118 before transplant and then the highest i weighed was 200
N I C K i’m so sorry i hope your doing better
N I C K was the weight easy to lose after you got off the prednisone?
Same here😢😢
Saad mahmood I started doing better and so I got a lower dose quickly started to lose the weight I never had much of an appetite before I took it life’s great right now I hope y’all do better❤️
when i was on it i gained 20 pounds TWENTY POUNDS and i had the worst acne that lasted months after i was off it
Abby • when I was on it I gained 40 pounds had bad acne and terrible moon face
I’m so glad it wasn’t just me I thought I was going crazy
How long did it take yall to lose the weight, acne, and moonface?
I’m in that boat right now
I had acne for years my face is perfect they started me on a lowdose ? for poison oak 3 weeks 40mg a day what should I know ?
Facial hair, sweating, hair loss and lack of sex drive to name a few extras.
My doctor diagnosed me as having a mild case of lupus and these past few days have been painful because I was flaring up with the aches in my wrists and it was depressing for me to just do normal routine things. I've had symptoms long before I was finally diagnosed.
I was put on Methylprednisolone but then my rheumatologist advised me to just take it only when I get rashes or extreme cases.
If you'd like to discuss more about it I wouldn't mind!
But yeah I just need to learn how to get in the habit of handling all my medications and getting over the slumps that come with flaring up because I'll stay in bed for hours and take a lot of ibuprofen that doesn't seem to do much. I get super irritable and moody too.
Thanks for sharing your experiences:) it's nice to know we're all not alone and here for each other.
Where's my Lupus squad at?
I just hate my acne😭
When I was on 50mg per day I could only sleep two hours per night. I'm still taking 5mg per day, I haven't come off since I started. Insomnia and the insatiable hunger were definitely the worse for me. And unfortunately for me, I have gained TONS of weight.
I'm glad you're down to 5mg cause that 50mg is a tough dose! Hopefully you can get off completely. I was on a 5-10mg dose for a good 3 years before I was able to get off of it completely.
@Just Fizzah Same thing happended to me. Take it very early in the morning set an alarm if you have to. This way you'll get the munchies over the course of the day and not the evening. Dont stress about the weight it come off with exercise as your body realizes it dosnt need to store so much fat.
Just Fizzstah sammmeeeee
I’m on 60mg a day for a year
Gosh, no wonder I feel hungry all the time. It was the drug!
This summer I had a bad flare and went from taking 3 mg of prednisone to 60 mg. One morning i woke up with extreme pain in both my hips and knees and ended up going to the ER. After getting an MRI I discovered I had avascular necrosis in both hips but a lot worse in my right. I had a core decompression surgery on it about 6 weeks ago and I'm starting to feel a little better. The biggest downside is that I'm only 20 years old but I'm glad I didn't need a hip replacement. I definitely also deal with insomnia, moon face and the bruises .. drives me crazy but just trying to stay healthy and positive ❤
I was so confused as I thought it was prescribed for chronic pain. I took it for asthma but I had chronic pain as well beforehand and the pain increased tenfold.
@@SobrietyandSolace it has been proven to be a very effective medication short-term, but yes with chronic conditions it is hard since we are always in pain! Ideally it's meant to control flares then slowly wean off. My problem was I kept flaring after I would taper so I never was able to get completely off until now after about 7 or 8 years of taking it every day. Hopefully you can find the right mix of medicine and lifestyle to help ease your symptoms :)
@@CookieJar350 I damn nearly killed myself after 3 days on it. Was literally broken down in tears in front of colleagues and slashing my wrists up in the toilets. I am literally in a homeless shelter right now because of how badly it fucked me up.Thanks, I hope so too, I just signed up for a pilot ,medical cannabis program.
@@SobrietyandSolace yeah I hear your pain. I was always extremely depressed and unfortunately will be suffering from the side effects for the rest of my life. I hope the cannabis helps! It definitely has helped me 👍 you got this babe
@@CookieJar350 Interestingly the worst of my pain was also in my hips and knees. Sucks, does’t it. I’ve experienced a lot of relief and no aggravation of my asthma vaping CBD flower but unfortunately where I am even that is illegal, so I[m fighting for access because I’ve tried everything else and this has the least side effects, but I don’t want to end up persecuted for it. Thanks for your well wishes and I wish peace and positivity for you, too. Sending internet hugs x
just seeing this now because i got diagnosed a few months ago with lupus. I got diagnosed at the age 11 🙁. Ive been on prednisone and i have moonface and been experiencing weight gain. These symptoms made me lose so much self confidence. I look myself in the mirror and i cry. i hate how i look. just wish i never had lupus😕.
I am having lupus too, and right now I am experiencing a huge acne on my forehead. I just hate it so much. But, let's hope things will getting better. Keep fighting 🔥🙏👍
Hey, thanks for making this video. I’m 12 and on prednisolone until February. I just feel like I really need someone to talk to about it. Whenever I go to school people always ask me why my cheeks are so “chubby” or why I’ve gotten so “fat”. Good on you for making these videos❤️ I’m sure it’s helped many more people, including me. Stay strong🌸
Same just got it this year in my freshman year really sucks to start highschool this way 😂
sAd vibes gave me HELLA acne I looked like a pizza with the Moon face + acne
sAd vibes well I started with 60 mg for like 5 month then I when down to 7 mg Rn but am staying at 7mg for the rest of the year
sAd vibes yea once they lowered the meds the acne goes away pretty quick and you might get a lot since u have a short period of time... just use sun cream because i got some dark spots from the sun and acne. Hope all the side effects and not so bad for you I wish u the best ! You can do it >:-0
sAd vibes oops I meant that u might NOT get a lot + don’t eat a lot of sodium because u can’t get some bad stretch marks
I have a rare blood disorder in which the only treatment is either regular blood transfusions or prednisone. I'm 23 years old now and have been on this medication for my entire life. It's strange to even acknowledge the effects as symptoms of the medication, as they've been my normal for as long as I can remember. It's comforting to know other people are going this; I've lived my life feeling very alone in this regard. Thank you for this video! It has created a sense of community for me that I didn't even know existed.
This is very helpful!! I feel exactly the same!! With the “oh yeah I can do whatever I want now..” then change to “wait why I always woke up at 3-5am, only sleep exactly 4-5hrs”... to “wait what happened with my face? It’s so puffy and many acnessss!! I eat clean food and walk more but it looks as if I gained 5 kgs!”
Thanks for sharing this.. I dont feel alone anymore :(
Oh, I’m still on 16mg twice a day for 2 months. Hopefully to get rid of it soon.
My job has facial recognition clock in, and it’s stopped working for me since my face has swollen up 🌝🌚🤦🏻♀️
I have a auto immune disease and this gives a lot of info for my family
Very well explained... Thank You
My cardiologist started me on a 40 mg dosage back in October due to a diagnosis of sarcoidosis affecting the heart. I was hesitant to start on it because I'm diabetic, and I knew the damage it could do with blood sugars. I kind of got that under control for a while, but now it's spiraling out of control. I started retaining fluids like crazy, and gained 40 lbs. by December. I finally told my cardiologist I couldn't deal with these side affects any more. Now I'm in the process of weaning myself off of it and going to methotrexate. I've been on oxygen since last January - now my breathing is getting worse due to all the fluid and weight gain this crap has caused. I wish now I'd never heard of Prednisone - this is some nasty stuff. I've basically blown a whole year's worth of progress by being on this stuff just a few months.
I was diagnosed with dermatomyosities 11years ago. I have been taking prednisone ever since. I started off on 55mg. I am currently on 5mg now. Last year I became neutropenic due to the other medication (methotrexate) that I have been on. It was stopped and not replaced with anything. Im doing good. Just Wednesday I was taken to the ER at the hospital I work at( im a nurse with an auto immune disease) due to experiencing chest pain and palpitations. I can relate to this video so much. Stay strong. We Are Warriors.
We really are I’ve been diagnosed with polymyositis and it’s been a struggle
16 year old leukemia patient here, post stem cell transplant, I have been off of prednisone for about 7 months now after being on it for around 8 months and I was just put back on a 120mgs a day dosage.. to say the least I feel like I have lost and I am terrified of what prednisone will do to me this time. Expect stretch marks, horrific acne, emotions that are impossible to describe aside from just dreadful, of course I'll be blowing up like a balloon again. Prednisone has honestly been one of the hardest parts of this whole journey for me, it ruins your confidence in every way, it destroys your image and feelings for yourself. You don't feel like yourself, and you don't look like yourself, it's the worst feeling ever. Good luck everyone, keep going and try like hell not to give up.
I've had the worst acne I've ever had since I started the medicine. :( it hurts! I'm the same as you where I normally don't get acne, except maybe just a pimple here or there... my face is covered. Thanks for posting this cuz I wasn't sure if I had something else going on.
I was back on it for a week today my first day off. I am so swollen hurting depressed n sad
The only thing Prednisone did for me was suppress my allergic reaction to an antibiotic. I've only been on it for a little over a week and slowly tapering off. I did start at 60 mgs. However, I have literally dealt with every symptom mentioned and then some. Like the moon face is in full effect ☺️ acne on my chin and on my brow stretching across my nose. Insomnia which is a laugh because I'm literally so tired, thinking about going back to bed all day! Bones and joints are hurting!! I'm so up and down in my mood I feel bipolar. My anxiety brings me back to when I was child and was unable to control my panic attacks. Other days, even with feeling nothing, I feel it fully. I feel so bad for anyone who has to live life with this drug. Totally new found understanding with people who have to adapt to life like this. I'm very anti-pharmaceutical, so I only take pills WHEN it's an absolute. I def see why because as it does help, nothing in life is free 🤣
To anyone who is still reading, you are not alone! This drugs side effects are awful 😞 hopefully you can find some comfort in knowing other people are out there experiencing similar symptoms. It'll be okay and if you can, find another drug lol 😂
Teared up while watching this you basically explained how I felt my last 2 years of high school. I didn't even want to go to prom and refused to ever let anyone take pictures of me. It was sooo bad the endless stares and questions like, "What's wrong with your face?" ughh worst time of my life but have to be thankful everyday that I am alive and well and no longer taking prednisone. I am now 20 years old and my lupus is in remission, I have learned to appreciate life and health a lot more since the day I got admitted to the hospital at just 16, to never judge a book by its cover because you never know what a person is going through and we should all be kinder to one another. Thank you for this simple, but so relatable video really makes me feel less alone like someone else out there knows what it was like and i'm not just crazy lol
Meztli that is so great to hear that you are now in remission! Enjoy your love life but like you said watch your health. High school isn’t an easy time to be on prednisone. I had it bad at 16 too. Best of luck!
@meztli do you loose your all steroid weight automatically?
Rant Alert: My boyfriend of nearly a decade and I broke up a few months ago and over the last two months I've had to go back-and-forth to Chicago to more times to get more stuff and see my rheumatologist and last week was my last visit with him. Today, I went to what I was hoping to be my new awesome rheumatologist. I hate it when they start out with "I doubt you even have lupus" when you've had it for 12 years. I'm like do I need to bring in photographs of my face when I'm in full rash mode? I don't understand. I know my blood work if you look at the numbers and everything when I first got sick it actually screams scleroderma- but it was lupus. I have the full perfect malar rash and I had a rash from head to toe that has left me scarred on my legs is with bruise like mottling. My grandfather died of lupus in the 1960s while doing testing so that they could use prednisone on us now for it, back in the 60s. He participated in studies with experimental doses of prednisone and he died from it so every time Itake my prednisone for lupus (which I got more of to start today and another burst) I always quietly think my grandfather for making a sacrifice for us. The sky was screaming fibromyalgia before I was in the room with him for two minutes I absolutely hate that when you have lupus you know I mean you find all the little signs if I stop my Benlysta infusions, I will get nose sores in mouth sores so big that you'll be able to see them looking me straight in the face. And as shitty as I feel now I feel 10 times worse. I'm just so frustrated because it never goes right with a new doctor my doctor in the shit in Chicago was also a pain specialist and he was very understanding. Now, I have been slowly coming down off of the major pain medication but this doctor does not even prescribe Percocet. He acted like I was a drug addict and that really made me mad because I'm allergic to NSAIDs. If I could manage this with anti-inflammatories I would be the happiest girl in the world. Just once I want a Doctor Who has lupus I had a bed there aren't any that exist. I also have another problem which is a serious case of degenerative disc disease and I have apparently shrunk 2 1/2 inches so I think I need to go see a back doctor as well there's a lot going on with me I just I don't want someone to just hand me pills I just want somebody to understand a that I do I have lupus and being that it hurts like blankety-blank. I am the one taking myself off the meds so I don't know why I got treated that way I'm gonna go back and see what he says after he looks at my blood work and then he may or may not be fired. Anybody else had trouble getting a decent doctor? I mean it's not like it only takes us 15 years to get an accurate diagnosis, you know on the average or anything. i'm sorry I just had to vent and I figured somebody here would have had similar experience. Thank you darling for having a forum for us when we have a bad day too because I didn't know where where else to go when I came home in tears-this is the group I talk to.
watching this video made me feel like i was a little less alone on prednisone, along with a lot more insight and things to keep in mind. i was diagnosed with chronic costochondritis in 2016 at age 14 along with fibromyalgia in 2019 at age 17 and have been on prednisone 5mg for around a year now and it fucking /sucks/. i frequently have to go on dosepaks because my rheumatologist loves to not fill enough of my meds so i have to get my system back in the loop which is absolutely great!!!(/s) my main adverse symptom ive noticed in the last 3-4 months is acne, so i see a dermatologist to manage that along with another condition i have. i've also had some issues with mood swings, especially when i'm on my period as an afab person. weight gain and moon face has actually played in my favor(which is kind of weird to say) because i have issues with hunger cues and gaining weight along with taking other meds that have adverse effects of weight loss so it helps my face fill out. i'm still working out other treatment options to help my costo mostly because thats the main source of inflammation in my body and i am not able to take nsaids so unfortunately it's something i have to take to keep myself in working order. if anyone else with chronic costo and/or fibro has any tips to keep themselves functioning without excessive meds i would love to hear it! stay well, friends❤
I do hate prednisone. I get massively depressed along with the other side effects.
Worried because I have been having unexplained fevers, joint pain and sores in my nose that take forever to heal. I have Sjrogens ... I can't even spell the word, brain fog huh? I have an appointment wth my new rheumy..Thursday.
🙏🏻everyone is doing as well as possible.
How are you now?
The worst symptoms I experience are insomnia and this gnarly stomach pain that doesn't seem to go away.
Ive been watching these videos on lupus and im somehow a bit relieved that Im not crazy or weird its just how this drug works...i was at 40mg everyday and now its 5mg every alt day bt i still have a humongous moon face and fat belly...i feel so depressed and angry..and hungry..hopefully i can get off prednisone forever soon. Also thank you for this video. Thank you a lot!
I’m on 60 mg for two weeks, recently had to increase. I feel like my face is getting fatter every day. I’m addicted to turkey sandwiches and I’m up everyday at 6am. Send help.
Are you okay now? I hope u are
I just started a 5 day course for my asthma. My stomach is killing me and I can't sleep. This is just day 2 and I can tell the difference. I usually have a 14 day course but the last time I gained way too much weight. I will be so glad when this is over.
Did you gain weight from your 5 day course?
Oh man I haven't been on prednisone in years. I'm fortunate enough that I haven't had to go back on it yet but my most prominent side effect was insomnia and I became completely nocturnal. Since I was in university, I could only see family doctors at that time and none of them believed that my sleeping problems were linked to the prednisone and I didn't have that information available to me either. Thank you so much for making this video! Past me would have found so much comfort knowing that what I was going through was normal for this drug, and that there were other people out there going through the same thing that I could have reached out to.
My brother has been badly effected by this medicine, he cant sleep at all only getting 1-3 hours sleep every night for half a year now. He needs help. What did you do?
How did you get out of the nocturnal insomnia
@@maryfonoti1166 I'm so sorry that he's going through that! I finally managed to talk to a doctor who understood and gave me a prescription for sleep medication. I started gradually shifting when I would take the medication and go to sleep by about an hour each day, and eventually got back to a point where I was more awake during the day. The sleep medication also let me sleep for longer chunks of time, which helped a lot. That was just my experience, though!
Rebecca Lees the thing is hes not even taking prednisone anymore for half a year now hes tried slreping medications but nothinh seems to work, do you have any reccomendations?
@@maryfonoti1166 I mean, for me, I started really purposefully creating a "bed time" environment whenever it was that I wanted to sleep (even if I didn't feel like it before taking the sleep meds) and I created a winding down routine to help trick my body into relaxing. Stuff like setting up low lighting and not using anything with a screen for at least 30 min before taking the sleep meds, giving myself a hand or foot massage, etc. Generally stuff that indicated to my body and brain that it was time to rest.
I also found some meditations super helpful? Like ones that specifically guide you to sleep.
I’ve been on 60mg everyday for 2 months I gained so much weight on my stomach+moonface. As a 15yo girl I’ve never felt so insecure with myself. I look through my snapchat memories from when I wasnt taking any medication or treatments and I looked so pretty, I just want my old body back.
me too girl i relate to you so much like fr ! i’m about to turn 15 and ive been on 20 everyday and it sucks so much feeling insecure.
@@dayanara6139 Hi. Did your moon face went down with lower dosages? I started with 30 mg a day and now I’m on 5gm a day and wondering if this low dosage will get rid off my moon face
Made me skinny fat and i hated my body. Depressed and super short temper. People would make fun of how i looked and i started only drinking vegetable juices for 3 months and cut down body fat. I was always paper thin and very underweight since i was very young because of crohn's disease. It made me self conscious about my eating even though the reason i was fat was prednisone. 3 years later after a flair up i was put onto an intense prednisone cycle before a seton placement surgery. I am currently one week after my surgery and the 3 setons i had installed don't hurt as bad as the 2 inch long 1 inch deep hole between my asshole and scrotum. Ive had an abcess and multiple fistulaes for over 8 years now and the fact that ive been wearing period pads all the time to make the puss and blood less uncomfortable to walk in at all times is really annoying and humiliating. Those abcesses and crohn's symptoms made me miss all of 5th and 6th grade and i had tutors come in everyday. But yeah anyways back to prednisone i have constant mood swings and always feel like i wanna kill someone, thats because i never let out my anger so these meds make are like the match in front of a pool of gasoline. I train super hard everyday and love the way i look but i'm always scared that i'm gonna look fat again and mess up all my progress because of this horrible steroid. Anyways that was my lil rant about a few things that bother me about my health situation. I could seriously write a novel about all thats wrong about my health. I'm not saying i'm the only person on earth going through shit but i just need to vent right now. Hope all is good with you stay strong❤️
I love how you explained prednisone!! Good job!! You didn't make it scary. 💜💜💜💜
Hi, my daughter was diagnosed with lupus 7 months ago. It was hell for me to accept that as a parent. I cried like every night when she was hospitalized. The 1st time she had a pleuritis and 2nd time a pericarditis. So she had to take prednisolone tab 2 times 30 mg daily. I saw my little baby girl (changing) starting to get bigger (fat) because of the side effects. She started to get lots of foods (every time she gets hungry), her face starts getting to look puffy (moonface), and lots of acne. Luckily her blood glucose levels stayed normal. I still feels very sad when I am alone and looking pictures of her from back then and now. Before being diagnosed she had complaints of joints pain for nearly 2 yrs. Now she still uses prednisolon 2 times 10 mg. But still have those hunger feelings. I am now in the process to accept her illness and talks a lot with her to be mentally stable/ strong. She means the world to me and I am very thankfull that you gave lotts of info. You're a very beautiful lady, but some times you don't know what is hiding behind a beauty. Thanks a lot... Stay healthy and keep up the good work.
wong iring you're daughter is very lucky to have such a supportive mother. Reminds me of mine. I know seeing your child go through an illness like lupus has to be one of the hardest things life throws at you. She'll get through this. 💜
Thanks. But I'm her father.
My father has also been a huge support. So sorry I assumed mother.
wong iring Reading this made me cry. Firstly, you are a wonderful & loving father. I wish I had a parent like you. I have had lupus since a child but was not officially diagnosed until age 26...now 47. The pain, the depression & all the side effects from medicine is just too much to deal with but what you are doing is so important!! You are teaching your baby girl to cope with symptoms & side effects. I commend you. ❤️
I've been having shoulder pain. He percribed me this. I'm beyond upset. Didn't say anything about side effects. I've only taken 2, an now im terrified. I can't stop crying.
Just got off my dosage of the devils tic tacs the same day you posted this
I'm suffering from rare blood disorder so I'm compelled to take steroids
I started takin meds 2 months before & now I'm on 5mg per day only
positive effects of this medicine,what I observed are:Activeness,potential to do anything,High focus/attention
I also got some side effect i.e Moon face,acne,insomnia,mood swings & craviiiiiiiinngs,
but I enjoy these changes ,I enjoy my food and eat whatever aen howmuch I want cuz I'm not gaining weight♥
I enjoy the different comments of ppl on my face
yeah!! I must enjoy cuz its my life & I don't know how long I've to take this medicine.
I got diagnosed with lupus November 2019. I’ve been on prednisone 5x times so far and I HATE it lol. I felt weird when I did: insomnia is true, increased appetite (although I’m skinny, this wasn’t too bad), restlessness in my legs, my skin peeling where I had the races at. It’s the worst
I hate it. Would write more but I'm too weak. Thinking about y'all!🙏🏻
Delivery
Hello and hugs to fellow Lupi.
I have been taking Prednisone off and on for over 20 years. The worst side effects have been at higher dosages or daily doses.
The "shakes " was the worst. When I am having a more sever flare I sleep a lot even on Prednisone.
People can be very judgemental. They wonder why you would ever take prednisone. For my doctors this is a LAST resort. So, if they see your other meds are not working, inflammation increases....then it may be a necessary evil. The weight gain after all these years is definitely a bigger battle. Really appreciate your videos and positive attitude.
Thanks for listening.
Oh jeez! My doctor put me on prednisone 2 days ago and i am nervous to even go pick it up from the pharmacy. I have had swollen hard lumps on the back of my neck and head and side of my neck. I woke up this morning scared because 2 new lumps developed overnight. My doctor didn't even bother to examine me or touch the spots of concern. She instead gave me a antibiotic and told me I had folluculitis.. I finished my meds and no budge! The meds didn't work so i went back due to the pain..and consistent swelling. A diffrent doctor examined me and looked at me like if I was crazy when I told him my folluculitis was not getting better..he told me that it was because I had swollen lymph nodes and not folluculitis. And I should come back if it doesn't get better. So I said it's been 2 weeks since I had last came and got diagnosed but before then it's a total of two months. He was surprised and sent me for ultrasound of my neck and head. The lumps are the size of a peanut or bigger. A few are the size of a small grape..and it's bothersome when I lay down. My ultrasound test are showing that my lymph nodes are benign... and that's all! Wth! My doctor calls me to tell me there is nothing wrong and tries to leave it at that. I argued that they needed to find out why I have 10 lumps on my head and protruding out of MY neck..is it cysts ..infection..cancer..swollen lymph nodes? I feel like crying at this point. Because I get the worst anxiety under stress.. I can't sleep or eat..my anxiety is so bad and the constant pain is causing insomnia. My doctor put me on prednisone to help with whatever inflammation of whatever I have..they don't know..and don't seem to care..during my visits they usually look at me and ask me if I need to "talk to someone". As in a psychiatrist! This is because when I am in pain or sick I go to the doctor and I get nervous and anxious ..mostly because I wait till the pain is bad ..because of fear of them judging me! I have to be my own advocate and push 4 test to be done..just so that they can discover that I have a thyroid problem! I just want to give up already and just wait for something drastic to happened before I see another doctor. Should I take the prednisone. I had to look up the side effects ..they just threw the script at me ..like take these and leave us alone..i guess it's because my doctor was in the middle of giving an interview to a potential medical receptionist while diagnosing me. Can you believe it! Should I go somewhere else for a second opinion!? Any ideas on what this could be? My labs were showing low white blood cells before this happened about 6 months ago.but my doctor never brought it up as a concern and never checked my whole report.. but I get a copy of it online..every time I get blood drawn I notice my white blood cells are a bit off. But not by much! I haven't checked it recently..i have been to a gyno regular check up pap smear and other test..everything is good. I am not sick..no virus..no cold..nothing.
Hey! I'm sorry you're going through this right now. Many times with medical issues we can be thrown in the dark and it is hard when the doctors don't always know everything. The prednisone would help if it is due to swelling. I'm guessing your prescription is for short-term, in which case you would most likely avoid most side effects. Might get a little hangry and deal with some insomnia but that's about it if it's shorter than two weeks and they wean you off. Second opinion never hurts! It's your health and it's important for you to know. I had swollen lymph nodes before and they were benign as well. They have been swollen for me for years but that is because I have lupus.
When you said you were on 60 mg I just thought to myself “why am I complaining”. It is just soooo frustrating because I’ve been losing weight/getting fit . And now my body just feels like it weighs 10 times more even from just having 20 mg a day for 3 days now.
I was put on 60mg for 4 days.
@@Shortgirllove 60mg for 4 days without slowly lowering dose to come off it???
For me it's alway the insomnia and night sweats anytime I've been over 20 mg, it makes me feel like I'm going crazy with so little sleep
Just had two cases of fluid around my heart where I almost died twice since my heart was barley beating. I was in the hospital for 15 days once then home then back in for 21. Had to be be air lifted to UCDAVIs. I'm home now and recovering but I'm currently on 40mg a day. I've never been able to come off of prednisone but my doctor had me down to 2mg (which I didn't feel well on, struggled everyday). I have bone loss and weak bones from it , my right shoulder is messed up and I have to do physical therapy at home. I completely broke out and I have the lovely moon face .
jackie kenney sorry to hear you have been suffering so much. God Bless you 💜💜💜💜
jackie kenney You've really been through it! I have had pericarditis and lots of pleurisy before but that's it. I'm glad you're getting better. I know what you mean it took me forever to get off of it. Every time I did I would end up in the hospital. I was in the hospital or six times in two years and it was the two years that I was blown up like a balloon, frankly. I wish you well and that you feel well! 💜
LuLuLand13 thank you hun I hope you feel well also
What's your instagram?
jackie kenney wow you've definitely been through it. Thanks for sharing with us all. Prednisone really is terrible even when it's lifesaving.
I know we all love to hate prednisone. What are your worst symptoms while on prednisone?
LiveHopeLupus been on prednisone for 9 yrs and just got off last month! I've gained so much weight through out those 9 yrs and had major mood swings!
I hate prednisone because I can't not take it.,you body is completely dependent on it which suckkkssssss cause it's destroying my bones. I also hate that when the wean Me off of it even just 5mg at a time I have horrible migraines for days that leave me bed bound
My body
LiveHopeLupus My PCP has me on hydrocortisone right now (have an appointment with the Rheum later this month, we'll see what he does) and is trying to hold off on prescribing prednisone because of the side effects you're describing, but I'm getting worse and I don't think I can go without for much longer.
Do you find that you have to use more during a flare? I live in Vegas too and I get SSOOOOO much worse during the summer. (Does anyone else have that problem too?) I'm in the middle of a bad flare that started 2 weeks ago from being in the sun for approx. 5 min and now have to double my dose of hydrocortisone until the flare subsides. I'm terrified the rheum is going to put me on prednisone instead but feel like that might be the only thing to get me back to the status quo....
Thanks for another enlightening video!!
Anxiety
Prednisone has help me walk and get my life back. I like the weight gain not the moonface! One day at a time...
Coming down off 80mg/day to combat erythema nodosum outbreak (have AR, Lupus and Crohn's as well). "Devil's tic tacs," agreed! Never had "moon face" this bad in the last 5 years of daily Prednisone dosage. Thanks for your video! Hopefully this can not only help us, but our family and friends who just don't/can't understand.
I use prednisone for my chronic sinusitis. You're beautiful by the way. Hope you get better
Your right on the money girl! Got AVN at 25-same year diagnosed and I was puzzled, I cried got over it then realized I needed a hip replacement all under 5 yrs. This illness, can get better with more Drs. or even people like you or I continuing with research and educating ourselves on diets. Thank you:)
I have 3 lung diseases. Asthma, allergic bronchopulimnary aspergillosis, and bronchiectasis. I started on 60 mg a day for a month and tapered down from there. At 20 now for the last 2 months. I’ve gained 20 lbs, have lost hair, gained 25 lbs, and I have the worst moon face ever!!!!! I’ll be on the prednisone for 7 more months. It sucks!!!
Ugh, I really hate this medication. It makes me anger easily and screws up my sleep. None of these things are typically mentioned by Drs. Just trying to stay on top of all this things on top of all the costs is very depressing. I feel so bad for all of the young people suffering from Autoimmune diseases. My symptoms started around my 40's, I'm 53 now. I'm also wondering how everyone's coping with all the additional stress from our country's current insanity. 😲
It can all be too much! Sorry to get political. Balancing continual rising costs of medicine, food, etc and living in a state that doesn't allow me to get any help really makes a bad situation even worse. Having to decide which medications I can afford month to month adds additional stress. Thank You! all for letting me rant. Praying for all my brothers and sisters struggling with these issues. Much love 🌸😘
Stay strong girl.
Prednisone sucks.
It sucks real bad....
Ugh prednisone. Cravings, moon face, temperature irregularities one minute cold next minute sweating buckets, mood swings, insomnia, peach fuzz on my face.... Just lovely... NOT!! I pray that I never have to go on it again but..... I think it's going to be happening again soon if my symptoms don't settle down.
Ive never had such bad acne in my life all over my face ive even got it all around my neck also my chest and my back was unreal large cysts and taking antibiotics right now but seems forever for them to clear
Thanks for video. I took prednisone 15 years ago and discovered all the symptoms for myself. This time round I was much more aware of what to expect and when I found this video I was pleased to know other people experienced the same as me so I am not alone. Friends have laughed at my comments or said noo don't be silly so it was great to send them this video and say this is how it is! Thanks for sharing:)
My mum is on this medicine and has become completely bedridden with pain in her legs and weakness so bad that she can’t move at all. She’s been taken into hospital, please tell me this will pass
I hate steroids, and this is a great video about it
Like me i gain weight
I have MS. Over fathers day weekend I had a flare up and went to the ER. The physicians assistant did a 1100 mg interveniously and send me home with a prescription for 1250 mg a day for 6 days with no taper period.
I experienced Adranal Crisis Syndrome the next day after stopping my last dose. She almost killed me. This was 1250 mg of Prednisone A DAY!
Anyways, three days of my body going through hell, I called my PCP and he put me back on Prednisone taper for 21 more days! Ugh...started with 120 mg a day and went down from there.
The side effects are no joke! I experienced every side effect mentioned. Its hell!
I'm off of it now and cant wait til my body recovers.
Prednisone makes me roid rage like really bad. So my mom and I talk to my Dr and he took me off of it.
im 30 years old I started with 50 mg I’m dosing down now been on it for almost 3 months.. I had the mood swings I’ve never had an acne issue I’ve got acne all over my back and arms like nasty white puss that Pop soon as u squeeze them I got the moon face round face I gained over 20 pounds I can eat anything when ever what ever.. I’ve got insomnia I’ve felt depressed I’ve ranted and said things on social media on topics I wouldn’t normally say or talked to people who I shouldn’t be talking to it has messed with my hormones dramatically such as being in the mood all the time but other than that it made my sickness go away temporarily . I was diagnosed with myasthenia gravis an auto immune disease that attack’s neuro and muscular system
Thank you for your honesty and vulnerability.
Thank you for this video. I'm on 60mg and I feel all of this.
i was only prescribed this for 5 days,,, dont think im ready
I was for 6 I never thought such a short period of time I would feel sooo many effects. Insomnia, increased hunger, water retention in legs and arms.
I've been on prednisone for 9months and I'm still on it, I get weight gain but I don't mind as I was under weight and mood swings I actually did not know that prednisone causes that until now so thanks. Can't wait to stop that medicine.
Are you still on prednisolone ?? Were you able to stop taking it? If I try to skip it I don't feel like eating 😔
Don't skip your prescription, take it as prescribed. It'll be worse if you skip it
Dang. They haven't yet figured out my problem, but Lupus is currently the #1 contender (final results in 6 weeks). I was on the Pred. from October to February, but have temporarily come off. Prednisone was cool for like a week. Then: sweat like sauna getting revenge, eat for an entire pregnant army, rage like hulk monster sometimes. I already slept like 5 hrs a night, now I go with no sleep 1-2 nights a week. Things that helped me: ASMR, herbal tea, ice bath, some vegetable to snack on endlessly (carrots), a punching bag and prayer.
After you're off the meds how long does it take to get rid of the moonface and does all the weight you've gained go away with the moonface or do you have to get rid of that yourself?
Took Prednisone for asthma. Ended up having my employer call the police and an ambulance to remove me from my live in job after a mental health crisis as I’d not slept in two weeks, was self harming, had suicidal ideation, had insanely worsened joint pain, became massively bloated, kept passing out from hyperglycaemia after eating anything at all (that and the weight gain made me stop eating as I was relapsing into anorexia-brain), I couldn’t string a sentence together or understand what was going on around me half the time and now I’m in a homeless shelter. I told my doctor about my fears before taking the drug and they didn’t even give me the follow up email promised to find out whether I’d fucking killed myself yet!
Prednisone is an absolute life saver for me when I get a nasty asthma attack. I rarely ever take it but it's an absolute life saver when I need it.
I’d literally rather die from the asthma, and mine gets so bad I cough until I vomit repeatedly all day, every day for weeks.
I always wake up around six or seven in the morning no matter what time I go to sleep
I take 10mg. Prednisone taper for about 2 weeks to get rid of poison ivy about once a yea because I always end up getting it on my eyes and what not. Everytime I take it it's the best my skin ever looks. After 2 to 3days my acne clears up on face and back.
Ah even as a guy the moonface makes me incredibly self conscious. In a world where all guys are magically supposed to have chiseled jaw lines I just don’t have time for this😂the thing is,I’ve been on prednisone on and off my whole life, or 22 years (I have cystic fibrosis) but started it at a much higher and constant dose in April because I had a double lung transplant. Anyways, first time running across your channel and you carry yourself very well and are really informative, I hope this helps a lot of first time users or veterans who just don’t want to feel like they’re going it alone! Good work!
Lol for us girls it’s the opposite, we are in a world where girls need to be fat in order to be found attractive 😂
The struggle is real! I feel you. I have ulcerative colitis and I’m currently on 60 mg everyday for 2 weeks and from there 1 pill off week after week. I am going through what you’ve gone through and I thought maybe it was the stress but no! I searched it up and it was the prednisone making me feel out of sorts. Well, I hope you get well soon from your current condition. Take care.
NO NO presdnisone yes yes yes to help with inflammation 😣 symptoms lol moody insomia hunger weight gain moon face when i wean the pain comes on ugh
Predinisone has been wack! The acne is horrendous, messing up my once regular menstruation, severe joint pain, moon face has been real, and I went for a walk and my legs were shaking after... FROM A WALK! But I tell myself that all these side effects are temporary and we gotta do what we gotta do to get better.
Same!
Just starting take 60 mg a day and I feel like I am going crazy. Mood swings, no focus, anxiety, and also chest pain. I'm really hoping that I don't gain any weight from this drug
Prednisone almost killed me and 10 months later I feel awful. No longer taking it still suffering. It destroyed my kidneys. I told my doctor I could not eat from pain and she didnt think that was a big deal and kept prescribing the prednisone.
Moodiness, moon face, acne, trouble concentrating and insomnia.....uff. I'm just lucky this is a 2-4 month round rather than a continuous medication for me. :/
I'm on it now. I have two more months to go.
I’m on it now. 4 day treatment. Yesterday was my last day. I pray I don’t get any bad side effects 😭
Doc put me on 20mg for my RA and I felt GREAT... then acne, doing dishes at 3am, cruising Facebook afterward... all that.
He knocked me down to 5mg and started me on Actemra. Today I got his ok to stop the prednisone as my heart felt like it was going to bust out of my chest!
We shall see what comes next.
Great stuff but yeah, I hate it! 😡👎
I was starting to wean off of my 60mg dosage and then I got to 10 and stuff started again so now I’m back up to 25 and I resent the way I look. It’s hard to look at myself in the mirror and feel any sliver of happiness anymore, and none of my friends my age understand and the internet makes me feel like it’s all my fault and that I should have taken steps to avoid it. And when I was on 60mg I also couldn’t sleep, getting like 3-4 hours a night. But the really bad part for me has been the moon face and weight gain definitely
Did you still have the moon face while on 10 mg ?
@@poorvanahar1057 yes, but not as noticeable
I've been on prednisone almost continuously since 2012. Only had maybe 6 months here and there total off of it. Right now I'm on 5mg daily after a lupus and polymyositis flare that started in Dec. Tapered down from 40mg. I do take calcium and vitamin d3 daily as well. I don't have osteoporosis but osteopenia, so that sucks. I'm not sure what other damage it has done but it works so well for inflammation.
I got moon face and acne and my stomach is so bloated. People don’t understand what I’m going through and they just call me fat.
Ben Montanez omg nooo. i was actually prescribed 10mg by my derma for the inflammation bc im on accutane. 😭
Are all the side affects fully gone now?
i’m on prednisone right now, not for an auto immune disease or anything, just some severe tonsillitis, and i feel terrible. i’ve been eating so much, i can’t sleep, and i’m too dizzy and shaky to go to school. it’s terrible. i’m only on it for a few more days but i could never imagine taking it long term. my muscles are sore and swollen and my heart rate is irregular. ugh.
Lucille Kohtz hi Lucille, I hope you’re feeling better now! Just wanted to find out how long these symptoms lasted for you? I only had to take prednisone for 5 days, but am feeling awful from it, and have had a lot of the same symptoms as you for about a week now. Any insight you could give me would be really appreciated. Thank you!
I had throughly sleeping at first . It’s been a year and now I can take it and then sleep like a baby ! I hated the moon face !!! And weight gain ofcourse . But food never tasted sooo good when ur on that stuff. The worst for me had to be the Hair loss. I was on 60 mg and then got tapered down .thats when I started losing my hair and I had hair up to my waste and it was nice and thick . I guess there’s other people that have it way worse . But that was the worst part of taking prednisone for me . I don’t remember experiencing acne problems with it
I’m so glad I found your video! I recently got a flare and back on prednisone which I haven’t been since I was first diagnosed back in 2008.. and completely forgot about all the side effects it brings. I am honestly not coping well and been in a slump, like you said mood swings, which I initially thought I was going crazy. I also struggled with body image and going back to prednisone ... the weight gain, puffiness and acne is messing up with my mental health. I was wondering if you can share your workout routine/meal plan to reduce the further weight gain & water retention? Anywho, thanks for making this video.
Thank you for sharing I was just prescribed the same dosage for something much more minor than lupus. Always like to double check things before I decide taking them this was very helpful!
I took 60mg for 5months! And I’m having the worse feeling. Moon face. Bloated and big stomach. Weak bones and acne all over the body. And now the Dr has reduced the dosage and its 20mg now. So please help me in knowing will the side effects also reduce or it will be the same…
Thank you.
I am only on this short term for a few days for a severe allergic reaction. I slept maybe 4 hours in the first night. Only 5 more to go... Can't imagine being on this long term.
Same here. I had a bad reaction to something last week and am on it short term.
So far, I have a face full of whiteheads, moon face, can’t sleep, and uneven skin.
I’m on day two of three. I’m taking this because I had a bad reaction to detergent. Does the steroid make it worse everyday? Does it stop?
@@PooduhBae it should be improving it. You may not see a clear difference until 5 or 6. If its continuing after that it may be something else. I had pityriasis rosea for 5 months and it popped back up after I stopped using the steroid. Nothing can fix PR. I thought it was heat rash at first. Good luck with yours
Update: I stopped using these on my day two of three. It made my skin worse. I took Benadryl, and I’ve been fine since
I’ve surprisingly have been sleeping great. I started the drug Tuesday night and have felt no side effects thus far. I’m on 10mg which I think is a low dose? I think it’s helping me sleep because I was in so much pain before that I couldn’t sleep, and now that the pain is gone I’m sleeping like a baby. What mg are you on and did they put you on it for a flare? Will they eventually take me off of it?
amanda green 10ml is a pretty low dose. But it can have some side effects but it's mostly irratabilty and hunger. (But it can cause ache) that's the only thing that really bothered me on that low dose. I hope you don't be on it to long lol.
I have autoimmune hepatitis and was diagnosed in December 2012 and my doctor put me on 40mg of prednisone and along with two immune suppressors and another drug called urisodel and playing with dosages over the yrs I am now prednisone free as of June 26 2018 and hopefully can get my weight under control
I'm on 60mg everyday right now feel great right now I'm embracing the chubby ness put on nearly 10kg in about 2 weeks thinks it's mostly water weight I think beats not been on meds for lupus I couldn't even walk last month before I got steroids and mycophenolate told my kidneys are pretty bad but no scarring 💪not getting much sleep and but least I'm back at work, only 23 years old. Docs said gotta hit it hard at 1st
Michael Ross my kidney doc just prescribed 40mg of prednisone and I’m scared to take it. The side effects just don’t seem worth it to me. What kind of kindney issues do u have
Hey I've got lupus in kidneys and joints, I'm now down to 20mg and I've lost alot of water weight I put on. When I had lots of water build up in my feet and ankles I used compression socks and they helped alot. Makes you feel hungry as hell make sure you try to eat healthy haha
im currently 16 and taking prendisone due to me having pneumonia and history of smoking and vaping (yes i regret it now) and this not what i want to do anymore. I've been having a lot of acne on my face, chest and back and it makes me feel so disgusted in myself and i also been having a moon face and i can't stand looking at myself in the mirror knowing i look like this. Im not used to having all these things on my body and its to the point where i don't feel like myslef anymore and all i wanna do is stay in my room where no one can see me and i get so sad and start to overthink. At first i was taking 3 pills a day and now im starting to take 2 a day but the side effects are getting so much worse and i don't know what to think about myself in general but i know i have to take these for a couple more months to slowly decrease and stop taking them completely but it's getting harder everyday and im starting to feel more sad and mad at the world, basically all these mood swings are killing me inside.
Im getting 3-4 hrs of sleep. And wonderful knee cramping at 3a.
I started first fortnight on prednisone treating vasculitis with 50mg, second fortnight on 37.5mg, third fortnight 25mg and reducing 5mg each each fortnight after.
I noticed I feel super alert all the time, sometimes it can be good sometimes it can be annoying cause you just want to relax and not feel wired. Waking up super early like 5am and it's a bit harder to get to sleep as mind is racing. Definitely noticed mood swings, have had major high positive moods and then while reducing my intake I've noticed my mood slightly down an I think it's from reducing from 50mg which is a high dosage to 37.5 and now 25. I usually get a red face late in the day like I've been coked by the sun all day at the beach, does any one else get this side effect?
I haven't got moon face after 1 month thankfully - recommend exercising daily and eating low carb low sugar diet for anyone wanting to avoid the moon face.
Thank you for the advice I am using it to treat copd and I have gained weight. I must avoid sweets. BUT I am soooooooooooooooooo hungry.
Thank you for this video I feel the same I've been for a month with prednisone I was diagnosed with Vogt-Koyanagi-Harada Disease