PLAQUENIL (hydroxychloroquine) | Benefits & Side Effects
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- Опубликовано: 13 окт 2024
- What's your experience with plaquenil?
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My name is Samantha Wayne and I have been creating advocacy videos on RUclips since 2009. I created Live Hope Lupus in order to create a space where those with chronic illnesses could get information and support. Please subscribe to follow me along on this journey!
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Who came here after hearing about the treatment of COVID-19
@@jeffw5565 Please do not start hoarding this if you are not sick 😅
yes www.expressdoktor.com/plaquenil-chloroquin-gegen-coronavirus/
ziad Almatroud me lol
No, my spouse takes it to survive but she can’t fill her prescription because of YOU.
ziad Almatroud I have recently been diagnosed with RA. My rheumatologist wants to put me on methotrexate. I really don’t know what to do knowing that this drug is used for some cancers and has lots of side affects including causing some cancers. I hadn’t heard of this drug until our President talked about it.
14 years on plaquenil. Just had my eyes checked and all is perfect. Exercise, eat healthy and stay positive! Hope you're OK in 2021!
Six years and running over here. Glad to hear you're doing well.
Thanks
Today is my first day of use for Sjogrens
May I ask what mg are you taking?
Hello Viking descendant. I’m also a Viking descendent lol. But I have sjogrens and am considering plaquenil
My daughter was diagnosed with arthritis at 14 years old and found no relief until she went on this med. She's now been in it for few years and it's been a miracle drug. When we all got a bad case of the flu last year, she was the only one who never got sick👌🎯. I did find that interesting that the government banned that drug when I saw with my own eyes how well it worked for my daughter. The reason it was so fascinating is because before she went on plaquenil she got sick ALL THE TIME😱. She's been much healthier since this med 👌
Hi @StompMom5 , I was diagnosed a month ago with arthritis, I started with the symptoms when I was teenager! Now I am 38 yrs. They prescribed me Plaquenil, I have lot of pain in my joints, but I am so scared to take it, so I haven't started yet. I am glad to hear that your daughter is doing well with it.
The timing of this video is kind of crazy. I've been on plaquenil on and off for 13 years (I'm 23). I'd forgotten to take my plaquenil one day weeks ago and just decided to stop it since I've never felt that it made a difference. Now for the passed 3 days my knees have been swollen!! I'm convinced it's because i stopped the plaquenil.
Thanks for posting!!
I have been diagnosed LES in 1997. I am Italian (town of Cagliari, island of Sardinia, my mother and father and grandparents were also from Cagliari, my father had malaria in his youth). I began with Azatioprina, but stopped because of liver warning signs. Then I was on Plaquenil for about 15 years. Finally I stopped Plaquenil because of scotoma scintillante effects in my eyes. My scotoma was a temporary effect like seeing through coagulated water, with luminescence around the frozen vision. It used to last around 30 minutes or one hour. Lately scotoma happens rarely (tipically when I delay having regular meals, or I work too much, or drink too much cofee). Medical studies say that Plaquenil is toxic to retina. Take care, but BE CAREFUL please!!! best wishes - - -
I’ve been on hydroxychloroquine for almost 16 years. I have gone off of it thinking it wasn’t working only to have my arthritis flare and I started taking it again.
Do you notice it causing you to get more colds or infections? I ask because my rheumatologist wants to give it to me for my arthritis, but I also have a compromised immune system from lyme disease, so I'm worried to mess around with my immune system and possibly weaken it. My doctor's answer to my question if it suppresses my immune system in any way was much less than reassuring.
Jessica H No, not that I can tell, but when I first started taking it I was having a bad flare. It’s normal for me to get colds or infections, because my wbc is always low. If your doctor thinks your wbc is too low he/she will probably take you off of it or lower the dose.
Ive been taking Plaquinel for a few years now for RA with trexject I'm in remission.
Went off them when I caught a cold recently because these drugs are immunosuppressive and the RA flared and smashed me. Took months to get relief again. Prednisone gives immediate relief but takes some getting off again when the immunosuppressive meds finally stated to kick in again
Does it work for your Arthritis
Did you have any side effects when going back on??
Terrible experience with it. Made migraines even more aweful, vision difficult, almost went blind. Got off after 4 wereks, never went back. Be careful, note your symptoms carefully. Glad to see a smile. Never lose hope.
Phyllis Cruz would you tell us what you do take that helps you?
I'm curious what the symptoms of your eye issues were? I have started to see eye floaters constantly to the point it is mildly obstructive to my vision. Is this what you experienced initially?
I had double vision from Plaquenil. It was horrible. 😞
I get Emgality shots once a month for my migraine, it's a wonder drug for me. $7000/shot but my insurance covers it and my doctor gets samples, so I haven't paid for it (just saying because it's expensive!). Went from 3-5 migraine days a week to 1 migraine a month. I was just offered a prescription for hydroxychloroquine today for my lyme arthritis, but also told to research and think about it. I think the migraines are the only pain worse than the arthritis. Thanks for sharing and letting us know!
Thanks now I’m not gonna try lol
My Optimologist has been practicing for 30 years and he says that he's never seen issues with it. He opined that it was only seen in the super high doses they did in the original testing back in the 40s (if I remember correctly).
I have Discoid Lupus and was on Plaquenil for 10 years. I stopped taking it (cause it wasn't doing anything) and the rash started back up. A reminder to be continuously vigilant when you have a chronic condition!
My rheum said, that it's a really rare, but since it's relatively easy to detect early, the optimologist visit is recommended.
That’s interesting. I just read about a woman who was warning others about the drug because she was taking a modest dose for a year only and developed the bullseye retinal damage that the drug can cause. She discontinued and the damage was thankfully reversible. She was adamant about having frequent eye exams. This makes me very nervous.
I think it's really great that you're making a video on a medication. It's nice to hear plain and simple information rather than the long or mixed information you can get online. I've been on plaquinil for almost 12 years.
May I ask what mg are you taking?
I was diagnosed 5 years, diarrhea side effect. Yes, doc wanted me to go off so I did, day10 I hit the wall, it was terrible, went back on. Great video🙏🏻, doctors get to busy to educate patients so really it’s up to patients to get educated. Great info Samantha, these kinds of videos are so valuable. Take it from a nurse who is big time pro patient education. Thanks for doing this!
Renee Runyan thank you! This makes me feel good. I always try my best to make sure I get the correct information. I want to be on both the patient and the doctors side.
Good information Samantha.
I have been on
Hydroxychloroquine for SyL Lupus for 32 years. I have no problem.
❤
Just started it this week. No side effects so far!
How is it going now? Did it reduce your pain, increase your energy, and were you able to sleep better?
It depends on the person for side effects. It takes time.
Any tips on how to get my dr to prescribe it I have fibromyalgia..
Love your videos! I have been on Plaquenil for 15 years; I have been on Benlysta for five years . I am doing well on the combination. 🙋💕
Are you colorblind???
@@sfsvaliantjelly8508 : no I am not colorblind. I get my Retinas checked every six months because of Plaquenil. Never had a problem.
@@michaelinekelley-boyet1713 Because plaquentil can cause colorblindness
May I ask what mg are you taking?
I went to a park for 2 hrs and I got a severe flare from the sun. My rheumy took me off and oh lord have mercy, I went backwards in my process. Became bedridden again like when I was when I didn’t know I had lupus. So, I went back in and took me another 5 months to start working again. What a nightmare. It is extremely photosensitive not only lupus but the med. thank you dear for your videos.
Oh no! Yes, plaq can make us more photo-sensitive. Thank you for sharing that in your comment, forget to mention that in the video.
I am 48 and I've been on plaquinil for 25 yrs. I am on the highest dose and when they try to take me off it I crash.
I have many side affects from lupus but nothing from plaquinil I have macular degeneration. They don't know if it's lupus plaquinil or hereditary because my dad had it aswell. I've done 6 solid yrs of chemo which did more harm then good. As a grown woman it took forever to find a doctor here in Sydney australia , most doctors told me to go home and wait to die. Thank goodness I am to stubborn. Much love
Sue W thanks sweety and merry Christmas . So since I posted the original message so much has gone wrong. I only have half my pancreas every doctor has said nothing left to do. The portion that is left has pseudo cysts which in the portion they are in is known to be cancer. I have lost 15 kilos since August . I really only have my GP now . Here in Sydney Australia we have some of the best health care in the world accept I have been totally abandoned. I'm not scared I am angry but I am powerless I don't and can't have private health. I am now legally blind . I a peaceful ,it's out of my hands now. So I say God bless and I hope the new yr brings wonderful joy to your life xoxo
Sue W I do believe God has a plan , not sure what lesson I am supposed to be learning but I never doubt him. I won't last long I won't make old bones ,at 49 I can say I made it to middle age. My grandsons are 1 and 2 I got to see them today and they make my heart swell. So God bless and I pray everything works out ok for you xoxo
That's nice to hear the positive side of the medications for a change, how they could be further benefiting us in the long run. I have not been on Plaquinil, but I see it is prescribed for R.A. as well. I find it interesting that so many meds/symptoms line up for both lupus and R.A., that's one of the reasons why I follow you.
Ty for another awesome video. Take care-
I had plaquenil for 5 years now:) I remembered one time I was struggling woth stress and was on total breakdown that I stopped taking plaquenil and guess what?? i was in total pain for months right after I stopped it and yes I regret doing that..so guys please follow what your doctor says and prescribed bcos its the best for your body:))
I’m about to start taking it because of my APS Autoimmune disorder. I’m super nervous because I hate taking medication but I have to take it. I’ll update with how it’s going! I start taking it today (if the pharmacy has it).
And How is it going now ?
@@magpeu7620 I took it for 3 months but didn’t really feel a change. I was so told to stop taking it and I will check back in if anything changes. I honestly didn’t feel/ see any changes while on plaquenil but we will see :)
@@fruitysound3826 Could you please share how is it going now?
I have covid-19 symptoms....waiting for test results. Was experiencing low-grade temperature and dizziness/headaches. Went on hydroxychloroquine and the symptoms went away the next day. I am here to better understand how long I can stay on it and the right dosage.
This doctor ruclips.net/video/1TJdjhd_XG8/видео.html used ....
Azithromycin 500mg (1/day 5 days)
Hydroxychloroquine 200mg (2x/day 5 days)
Zinc 220mg (1/day 5 day) Best Wishes
I’ve been on plaquenil - here in Brazil we call it “Reuquinol” - for 8 months (the time I’m diagnosed) and sometimes I feel that it doesn’t work, but I can’t remember the pain I felt before I started taking it, exactly like you mentioned during the video. I’m taking azatioprine (I think that’s the name, not sure) too and Prednisone (20mg, I hate it but can’t live without it). Lately I’m having a lot of flare days, and I feel like I can’t accomplish anything - between college and work -, but I believe that better days are coming. I love your videos, they make me feel less alone with my pain!
if you take prednisode with this dose for long time you bone will lysis becarful from that dose safe dose is 5 mg
Thank you this video helped me with my fears starting it today.
Congratulations your video is about to go viral.
diagnosed last year, been on plaquenil since, doing ok so far!
hi 15 years on plaquenil my eyes are fine ,check the imaqulas behind eye good two hearlam not on my own , thank you 🌹🙏
Thank you, my doc. And I have different opinions. She said " I don't know what do you have" so I am gathering inf. About my positive ANA and coagulation blood test.
This is very clear inf. and the case study is so amazing for my to provided and discussed with my doc. Thank you again for your comment and inf.
I was on it for 2 years and ended up developing an allergic reaction to it. I was taking it with another med for my RA. I hate that I had to stop it because I felt fairly good until the allergy started. My tongue and throat became swollen so I had no choice but to stop it. When I stopped it I went into a massive flare that has yet to calm down 4 months later.
Sarah Rune sorry to hear this. Have you tried something to else and have the side effects changed?
My eye dr. says over time it will damage anyone's vision. He has had to provide medical data in court cases against the drug. I was on it for 7 years when I had to stop due to vision issues. (I was not part of the court case).
On the other hand I felt amazing taking it. All drugs have a give and take.
I have moderate-to-severe rheumatoid arthritis in both hands and my right foot and my doctor prescribed this medication. Had my eyes tested by the emp specialist. I'm passed all the tests, I'm 59 years old male and I have very good eyesight and I drive for a living. I'm scared to death taking this medication not going to lose my eyesight and I'm not going to take this unkess I absolutely have to. Both my doctor's say oh yeah this medication will help you but I'm scared to death taking it. Thanks for the video.
Slingshot2018 hi there, curious to know if you ever ended up taking the medication. Like you, I’m terrified to take it because of hair loss and eye concerns. How are you now?
I’m a 44 year old white male with lupus taking Plaqunil. So far no side effects. I’ve been taking it for over a year.
So how have your WBC and RBC been? Is it normal or low?
I am so thankful for you and your channel. I started plaquinil earlier this year and I do feel like it doesn't do anything but I believe you are right. If I were to get off of it I'm sure I wouldn't feel well. This video was very informative, my mom and I have the same connective tissue disease and I need to share your channels with her.
Hope it is helpful for her as well! Thanks for tuning in.
May I ask which Connective Tissue Disease you and your mom have? Recently diagnosed with an autoimmune condition and trying to find similar folks who have the same struggle as me. Thanks!
@@juzndn undifferentiated mixed connective tissue disease, which means there is evidence of an autoimmune condition but we do not meet a criteria for any specific autoimmune disease. My condition is closest to lupus. My doctor often speaks about that and any treatment falls closest to that as well. It has been 6 years and not much information has changed for me
@@adriennecarrasco37 Thank you! I was misdiagnosed as having Lupus before still I went for a second opinion. I have the same condition as yourself. Are you taking any other medication for this condition? I'm leary to try any prescribed medication because then I have to take another one to handle the side effects from the first one.
Do you have a lot of inflammation ans swelling in your joints too?
@@juzndn I have actually stopped taking plaquinil. I am currently only on blood thinners because one of the symptoms I developed is a blood clotting disorder. I will occasionally need vitamins b shots and prescribed vitamins d when my body isn't processing and they get extremely low. I have made significant changes to my lifestyle and have been managing pretty well. I am a vegetarian (Dr says meat can cause inflamation) and have cut out night shade foods and some other things. I don't get much swelling but deal with joint pain often. I am limited with pain management due to my blood thinners so I use Diclofenac to manage arthritis and joint pain. I was diagnosed 6 years ago and the past 2 years I have been trying new ways of creating helpful and healthier habits.
I tried plaquenil for my Sjogrens and once it kicked in, I felt like I was dying. It enhanced all of my symptoms at the same time. I was so disappointed because my Sjogrens is terrible. I feel like I'm in a flare everyday. The only drug that replaced it is an antinflamatory called Celebrex. I tend to be very sensitive to many drugs and I really needed this one to work for me.
Thanks for your input, I am still on the fence about whether to start it. My rheumatologist wasn't reassuring either. I have multiple health issues, one that it may help, and some that it may hurt. She called it a "baby" medicine though like it is weak, but it seems like powerful stuff to me, and she was comparing it to methotrexate at that, which is used in chemo...so eh, I'm still not sure.
celebrex is awful too. All these drugs are. I'm taking borax, no more joint pain or swelling. I'd suggest looking into natural treatments for inflammation. No way I am going on any drugs, I have this because of NSAIDS and kidney disease from the NSAIDs.
I've been taking it a month now for my lyme arthritis. I helps my fatigue and joints a bit, so I'm using less pain killers. I have had zero appetite, and I gag when I'm brushing my teeth, or sometimes, I just start gagging. It's funny, I'll feel like a flare is coming and then it stops, but it's only been a month. I was going to visit another state for lyme disease treatment, but this whole pandemic has ruined any travel plans of mine, so this was the best thing in my doctor's tool box for now. I got a prescription for Celebrex too, but do watch your kidneys with this and NSAID's. My mom had RA and stage 3 kidney failure from using aspirin and Celebrex to treat her arthritis, just keep an eye on your GFR when you get your bloodwork done. Most doctors won't tell you until your kidney function drops below 60%.
@@jessicah3450 I also had stage 3 CKD from ibuprofen prescribed for endometriosis, which also seems to have given me autoimmunity, otherwise lifetime clean diet, fit, I look 15 years younger. It was a shock. Watch out for these meds, there is almost always a natural alternative. That's the path I'm on now. Good luck. I have sweet wormwood arriving tomorrow, should be a natural form of plaquinil. I also ordered NAC. The CFS I have is insane, 20 years now, on a big fasting, detox, natural treatment plan. I don't have my glasses on so hopefully all of this makes sense!
@@someoneusa I tried Borax too for a while and it didn't work. I've tried so many natural remedies too but nothing seems to be helping only hemp helps a little.
First diagnosed with DISCOID LUPUS 2011 at age 23. Presented in the form of alopecia, lost approx 2 inch diameter patch of hair, slightly sore to touch, no other symptoms. Saw specialist dermatologist who immediately recognised lupus, followed up by confirmed skin biopsy. Started 200mg Plaquenil. Only took for 4-5 months because my hair was growing back on its own and the follicles weren't dead. Did a couple years doing blood test and felt no other symptoms so stopped seeing doctors. Hair eventually grew back really well, I have 70cm thick, long hair and it fully grew back after maybe 5 years. Couldn't wear hair up for all those years and when I did many years later, scalp was a bit tender an sore when I release my high pony. But not so much now.
Fast forward to August 2023.... I had been feeling quite fatigued with sore knee joints, stiff ankles and sore calf and quad muscles for probably 2 years maybe even 4 years... very slowly getting worse until I knew this couldn't be just physically working hard and being tired like 'everyone is'. Only 35 and feeling like I was an old lady getting up out of a chair. Also I normally sit on my feet/legs so I thought this was finally catching up to me and maybe that's why I was sore, hence delaying medical help..
Saw a new GP and informed her of my symptoms and my previous history with DISCOID, acne (acutane treatment), Melioidosis etc. She was immediately alarmed by the discoid lupus and ran a heap of blood test. Came back with my C3 and C4 complements being out, indicating I had SLE.... mild SLE (systemic lupus).
Went to the rheumatologist, he confirmed mild SLE hence my sore knee joints an ankles. The very next day... My elbows started getting sore just hugging my pillow, my knees were intensifying and I was having brain fog, major fatigue and headaches, which headaches have always been 1-2 a week for me anyway. oh an pain in my finger joints when I gripped anything hard.
It was exhausting walking up stairs and my knees would be burning by the top of 1 flight. The fatigue was so bad, that I'd sleep 12 hours and still wake up tired and like I could sleep more.
I started back on Plaquenil September 25 2023. So it's been 3 months. Im 63kg and take 2x200mg 5 days a week and then 1x200mg on sat & sun.
My doctor told me it would take 3 months to start working..
My first 3 weeks it affected my stomach a bit, not too bad but you definitely have to eat with them, milk didn't cut it for me. It sometimes gave me a little diarrhoea, and rumbly guts, farting a lot. This did stop eventually, still fart every now an then. Joints were all still sore until suddenly at 3 weeks it all went away! Felt Amazing, only to last 7-10days before all the joint pain, fatigue, muscle soreness, brain fog came back. This stayed bad until about the 10 week mark when I saw my rheumatologist again and told him about the sore muscles again, he believes I may have FIBROMYALGIA too. Also before I started new drug below, I was experiencing motion sickness for about 1 week, for example, immediately felt sick if I looked at my phone in a car, and couldn't play or watch video games.
For the FIBROMYALGIA, Started on an additional drug called NALTREXONE (LDN) 1.5mg a day. Had one bad vivid dream but that's it. Awesome drug! I instantly had energy again, fatigue almost completely gone now for 8 days straight! instantly started working, brain fog gone too. I feel alive again. In terms of pain in joints and muscles, it's at 50% of what it was at its worst. Liveable I think. I had one bad day with my knees a couple weeks ago when I had done a lot of physical work that day, the throbbing was insane and probably the worst they've been, but I woke up the next day an it was back to average 50% pain, so my guess is the PLAQUENIL may have reduced the flare. Muscles are still sore (possibly this is FIBROMYALGIA?) they have backed off the intensity but still there. Will be increasing dosage to 3mg and the 4.5mg eventually... stay tuned.
Good to know people have been on PLAQUENIL for 10+ years with good results and little to no symptoms, this is very promising for people like me.
Has anyone found a good treatment for FIBRO where all muscle soreness goes away? or even with SLE does anyone use PLAQUENIL and actually not have any LUPUS symptoms anymore?
Also worried about the eye stuff, so will be getting an eye test very soon. No problems yet.
That's what I'm on , and like you I feel the safest on it. I go to the eye doctor 2 times a year for that and I've been diabetic since birth. The only thing I had an issue with is it made me nauseous. After he told me if you get the build up in your eyes come off and you'll be fine and that won my heart. Everything else is so harsh and not reversible with other meds and I have my diabetes going after my eyes already . Thank you for every single video you do . It makes me feel so confident in this not taking me down. So much love for you , you make me feel anything is possible within reason . Thank you sweetie, you are a big blessing in my life and so many others!💜❤💜❤
@Sue W Thank you for being truthful because I feel the same way , like I can't trust doctors and the more I connect with people that are dealing with the these issues , I'm not the one that's crazy ,we are all saying we are experiencing similar things are exact same things while doctors are turning their ear and we are paying for it. I'm almost to the point where night time driving is impossible, I wont take the risk and the last almost two weeks my left eye is nothing but a blur . We suffer not them . You are right. Thank you so much and God bless you and be with you.
Been on plaquenil for 15years now and just been diagnose with the macular retinal toxicity. Awaiting a specialist appoinment to discuss alternative meds for my RA.😢
Don't get complacent with your periodic eye tests peoples.
I already have severe liver & kidney damage, so that kind of rules it our for me. Thanx, posted it...
What are you talking about it helps protect your liver and kidney from getting worse
HUMIRA, have you ever been on it? I will "for sure" ask my Rhumatologist about this drug. He is making me try Humira for 5 months. I see no change. And its a self shot, which i am afraid to give my self. Humira was given to treat my poly-arthritis. I was hoping it would end my flares. It did help w/colon, at first. But gives me inflammation sacks all around my collar...lots of pain. And endless migraines now. I also have fibromyalgia.
Good timing for this video, I was put on plaquenil 400 mg in 2005 when i was first diagnosed with discoid & later systemic lupus, I get my eyes checked every year with all crazy test of flashing lights and other crazy test but Dr says it all good..although to read I wear cheater glasses from Walmart but Dr says i just getting old ( i am only 49 ....how dare him :) )
I have been having horrible tintinitus in my ears ( like give me migraine headache bad) and I read somewhere that plaquenil can cause that..SO I decided to quit taking plaquenil about 12 days ago.. no didnt talk to my dr.... as for as the tintinitus it is a little less intense at times but still there. As far as lupus symptoms the jury still out on that topic... I am having more trouble with joint pain and such but the weather has been CRAZY here with cooler mornings and rain and I always have trouble with weather changes so I not sure if it stopping meds or just a mild flare because of weather in Louisiana 50 degree mornings and 90 degree afternoons will cause havoc. At 1st I said I was going go 3 months without it but I beginning to think I picked the wrong time of year to do this experiment.. I just know something has got to give with the tintinitus cause it driving me crazy....
Has anyone else had trouble with tintinitus while on plaquenil?
I've been on Plaquenil since 2004 without any side effects. I *think* it helps me. I don't want to be one of those who goes off and finds out it was helping all along, lol.
What does it help u with????
Well done! I did have to get off of Plaquenil and I did have eye sight issues after one year.
Plaquenil for 2 years has been god send for my lupus. I now have lung damage NSIP so i have to add azathioprine which i hate.. hope i can ditch the aza in next two years and only need plaquenil
Good video. I want my patients to see this!
I was diagnosed with fibromyalgia, central sensitization and recently Sjögren’s but by symptoms. I started Plaquenil about 2 weeks ago and I’m hopeful it’ll help with fatigue and joint pain mainly. I guess time will tell. Thanks for sharing!
@Lo B No, not at all :(
@@lindapriebe9011are you stop using it or it gets better?
I had it then I had to stop. My eyesight was getting bad. I was told it could make me loser my vision or just mess it up big time. :( I had a bad experience.
I've been on hydroxychloroquine for 2 years. It took more than a full year for it to start helping. I was diagnosed with small nerve fiber inflammation and RA or Lupus. Haven't differentiated yet. It started after having a bad case of original Covid. It is a great treatment! If I miss a day, I feel it though. I had low glucose levels already and this sometimes tips me too low.
I just started taking this medication. 200mg twice a day, and naturally prednisone along side it for the 2 months to allow the medication to begin working.
I'm grateful for the rheumatologist prescribing this medication.
This video helps calm anxiety, so thank you for your content.
Me too this is my first week I been having anxiety because of taking meds prednisone make me stay awake...this video helps calm me for worrying
I’ve been on it since being diagnosed in August. The first time I ever took it, I got sick to my stomach. Now I can tell a difference. I have no pain other than occasional RA pain. I do problems with my eyes now, which is scary. My eyes hurt a lot more and is sensitive to light.
Jessica S. Have you had any more eye problems and side effects? Just started
How are your eyes? I have to get clearance from an ophthalmologist of I want to start it, and get eye exams every 6 months. My eyes are already messed up from my migraines, I have light sensitivity, aches, and twitches from that. Thanks for sharing your experience with it.
I take 400mg plaquenil daily for 9 years, I haven noticed help with joint mobility, but i still get extreme swelling in my hands and feet. My eyes have degraded over the past cpl of years but my specialist do not believe its from plaquenil usage. I get weekly ocular migraines, specs think that one of my lupus symptoms not a drug side effect. I have also suffered stomach issues, but as i take so many drugs they can say which one it is, so I am on another tablet to help with that. They think that it may also be a symptom of my Sjogrens. I am monitored closely to watch for any changes.
I had ocular migraines before I was diagnosed with Lupus. I could barely see out of my right eye.
Uh yeah im glad I watched this. I was prescribed this and prednisone today for lupus SLE by rheumatology, i also have an albuterol inhaler ive been on for years, and with my tacchycardia I am worried about mixing those. I have an opthamology referral for suspected glaucoma and now after the video I worry if this could further damage my eyes. Jeezzzz, sounds like i better ask my PCP 😮
If you have minimal joint pain with Sjogrens is this still a beneficial drug? Does it present progression?
Samantha, thank you! This is the most informative video on Plaquenil (goes by hydroxycloraquin in the UK) I’ve been on it for about 3 years now. It’s encouraging to hear of someone who’s been on it for as long as you have without any overt adverse side affects. I’ve been borderline diabetic for a few years now and in view of what you mentioned about the added protection it provides it explains why although I’m slightly losing the battle of the bulge the diabetes hasn’t yet become full blown.
Thanks for making this video. I’m glad to hear that Plaquenil is working for you and that you have been (happily?) taking it for more than ten years.
I was diagnosed with lupus about 2 months ago, and I’ve been taking Plaquenil for about a month. My anti-ds DNA antibodies are coming down, my C3 and C4 compliments are going up, but my CRP is still all over the place. I’m taking some other drugs, too, so it’s hard to say if the Plaquenil is doing anything or not. Somehow I feel like it’s not (yet) since I still have symptoms. I am prepared to take it for at least 6 months before I second guess taking it. No side effects that I am aware of.
The reason that I didn’t start Plaquenil right away is that originally we thought my symptoms might be the result of “drug induced lupus” due to a TNF-alpha inhibitor I was taking for rheumatoid arthritis. In that case, once I quit the drug (which I did) the lupus symptoms should have gone away within two months, so I was on a high dose of prednisone, which is super fast acting (within hours). But I still have the symptoms, which come back when we taper the steroids, so we added Plaquenil and other drugs, and we’ll add more since symptoms are persisting.
By the way, many years ago I took Plaquenil for my rheumatoid arthritis. I didn’t have any side effects, but it didn’t seem to help with the RA, either. But lupus is a different disease, and I believe the experts who say it is a game changer and everyone with lupus should be on it. Hopefully I won’t have any side effects this time, either.
to soon to tell...is your dsdna down still from plaquenil
@@charlesopie I don't know if it is a result of the plaquenil or not, but my DS-antinuclear antibodies are down, but not back at normal. I have almost no symptoms now, but I think it is probably because of the other medication I am taking -- tacrolimus. My rheumatologist thinks it would be fine for me to stop the plaquenil and just be on the tacrolimus. My feeling is that I should keep taking both.
ive only been on it for 2 weeks (as of tomorrow), I have pretty bad vertigo and nausea sometimes but overall I've been doing pretty ok. BTW your videos helped me so much learning the differences between RA and Lupus! My Doctors are still trying to figure out which one I have but your videos make me less nervous about the possibility of Lupus
Thanks Samantha, I have been on Plaquenil for 2 years and the only side effect that I suspect for me is some hair loss. Have you heard that one before?
I was prescribed Plaquenil 2 years ago when I was diagnosed with lupus haven't taken it refused to take. I use CBD which helps, not the mental all natural
What is CBD? Please share information on it, I am interested to find out more
@@rarehuman it is Cannabis Oil, this might help for pain (not severe or intractable pain) but it's not a 'cure' for Lupus. Please listen to your Dr. and continue to get monitoring for your condition for it can be life threatening to not get regular care
Thank you for your information ! Been on it approx 2 years, and my bloodwork recheck after 6 months went to normal! In fact the Drs themselves don't seem to say much but the nurse said that's how they diagnose SLE- AFTER the blood recheck came back normal the med kicked down the immune system reversing damage- has anyone else been told this- and also has Drs kinda bested around the Bush with the diagnosis?
I haven't taken any medication specifically for an autoimmune disease yet besides Naproxen. I just met with my rheumatologist today via telehealth because of the covid-19 outbreak, but she told me my blood work showed negative for lupus. I couldn't see it in person, since it's like Facetime. I know I'm ANA positive, but that can go with other illnesses. Therefore, I don't know what she checked to show that I don't have lupus.
I’ve been on 400 mg of Plaquenil for Lupus since June 2010. I sometimes will get red and hot in the face. I also haven’t had any problems with my retinas.
Amy Frost sounds like the malar rash. I get red and hot in the face before I get sick.
Wich food should we eat after the side effects of hydrochloroquine m suffering from it please help me out of it...
The Dr. wants to put me on it , I've just diagnosed this week. I'm nervous because I'm so sensitive to medication, instead of helping with the pain it increases it. My body seems to attack what is supposed to do good and think it's bad.
Plaquenil was removed in Northern Ireland, possibly all of UK. I went online to a forum, Hydroxochloroqine, has same PL no as Plaquenil, so basically it is exactly the same formulation. My Dr then prescribed that. I'm not exactly sure, as so much has happened, but I think it's 4/5 yrs I was on it, and it did help. My Consultant took me off it about 3ths back as it is affecting my right eye, which my prescription can control, but to leave me on it, he felt was not advised. It did help, but I seem to be ok at present without it. Steroids (Prednisone) I was not as fortunate as you. I wouldn't ever take it again. How could I notice any difference, my weight almost doubled! Carrying that weight on a 4'10" body was awful, my joints groaned and so did I. No diet change, just unfortunate. Consultant explained, it can happen with some. Ironically it was given as I was losing weight yet eating ok! The weight was tough on my lungs and joints, took 3 yrs for weight to become almost normal. I take still have steroids in 4 inhalers, which I couldn't be without. I have COPD, Asthma, and more, well that's Lupus, you get plenty of variety 😏.... proper exercise, gym, etc is a No. Swimming yes. Only our pools are chlorinated, lethal on sensitive eyes, so not an option, only Countries with Salt water pools, brilliant, but, I learned it takes forever to get in the pool, I can't jump in, it shocks my lungs! In 28 degree pool in Germany, was about 10 degrees more outside pool, I jumped in as always, friends got me out while lifeguards kept a close watch on me, another got inhalers, I eventually recovered.... Ive never jumped in a pool again. We went to the pool every day with our children, my friends lived there. Each time I appeared, the Lifeguards hovered....to complete my total humiliation, I had to walk in from the children's end, gradually, very gradually. I might have found it funny, if the little ones hadn't been so interested 🙄... Swimming is great and good exercise for the lungs too. I invested in a Pilates machine on Consultant advice. Benefits are good exercising lying on the bench, using the rebounder is better on the joints, great for lungs too! Unfortunately, I need knee op, deformed knee caps and cartilages, Pilates Machine is getting a break from me! It's long, but folds in half. I just leave it out, you can do a few minutes every 2/3 hrs which is more beneficial. I can't gave arthritic drugs as I'm allergic so don't know how effective they are. Also no to Flu injection, if you can take it, they do advise it. I was able to get pneumococcal injection, fortunately, no reaction, but I still have had pneumonia twice this year, caught quickly as I know the symptoms, antibiotics, bed rest without hospitalisation. Great. Very fortunate.
I may sound all doom and gloom, diet does help. Cut out processed food, sugary drinks. Really, get your body as healthy as possible with what you put in it. Rest when your body needs it. Trying to keep going can make you worse. Listen to your body.
Gastrointestinal issues can be a Lupus problem, as is Osteoporosis. I have both.
I am unlucky as most sufferers have fewer issues, I know 3 others who are very well. 2 work, the other took early retirement.
I'm pretty content, happier than people expect, anxiety doesn't help, so avoid anything you feel causes it!
I must take my own advice, tell those 4 boys of mine to stay at home😂. Seriously though, take care of yourself, you will benefit, I definitely have.....
I have been on plaquenil 40 years
How is your vision?
Apparently she can’t see the replies, so there’s your answer...
Crimson Discovery im dead😂
@@crimsondiscovery4290 OMG 🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣
@@crimsondiscovery4290 haha!! My kind of humor
Love your videos, they’re so helpful!
I have had peculiar inflammation episodes since childhood, by age 25 I had debilitating fatigue and by age 26 I had profound inflammatory episodes that caused dramatic hair loss and joint pain along with insomnia, originally it was resolved with corticosteroids, however I am suspected of having SLE by a doctor. I may be put on Plaquenil but I am worried about the side effects and potential for hair loss.
I have had two very bad inflammatory episodes that have resulted in a dramatic loss of hair (that regrew thankfully), but I am worried that plaquenil long term may harm my hair. Has anyone taking plaquenil long term noticed problems with hair density at all? I really want the constant joint pain and fatigue to go away but I really don't want to lose my hair in the process, that was traumatic enough.
I'm losing my hair and my Dr wanted to put me on Plaquenil. Did you lose hair ?
My son may have to go on this. Did it cause any mental health side effects for you? Have you tried Rituxamab?
I was on plaquenil for 8 months, had to stop because I started having constant head aches after about 5 months. Also felt hungry (to the point of feeling dizzy) and my skin broke out (think that has to do with the effect the drug has on insulin levels). But it did work well for me, I really wanted to stay on it but the headache was too much.
Did you find a good alternative for it?
@@mahmoudabdalla8416 I went on heavier medication that made my hair fall out and I became more anemic (I forgot the name, it's a cancer drug), so after another 8 months or so I decided to quit disease-altering medication and focused on healthy diet and stress reduction. So far so good. But of course everyone is different and reacts differently to medication and diet.
My cousin has been taking hydroxychloroquine (the main ingredient in Plaquenil) for rheumatoid arthritis for many years, and loves it. I am researching to see if it can be used for psoriatic arthritis. If anyone has any info on that, chime in. Thanks. Love your video!
While taking hydroxy for RA, the psoriatic arthritis symptoms were reduced - a bonus
I actually just got put back on it. I had been taking it for about 4 years and then I had stopped because I was convinced it was affecting my eye sight (although no test confirmed it.) But I felt pretty fine on and off it. Recently, however, my current doctor has decided to put me back on it to replace the Arava that I had been taking.
They did a muscle biopsy on me at mass general hospital recently since the last several years I have been getting more muscle pain and I developed small fiber poly neuropathy and more weakness and fatigue and concluded that I have plaquenil toxicity. Apparently only one in 100,000 people get it, and I was the one. There is no guarantee that I will get my damaged nerves to reverse or my muscles to gain strength again. I’m not against plaquenil at all, but unfortunately I developed severe neuropathy muscle weakness and pain that I was unknowingly giving myself every morning with my pill.
Whoever told you Plaquenil Toxicity is one and 100,000 and rare is wrong. I just watched a video of an eye Dr saying HydroxyChloroquine reaches toxicity by year 5 in all patients
but as to how you react to its toxicity is different in all patients some have severe reactions in less time far less time, while others do not have reaction after year 10 and 15 the chances of a toxic reaction dramatically increase. As another commenter here said as well that all patients vision are eventually damaged while taking it. Dont believe that its RARE crap
Ive heard that so many times only time find out that what many Drs call rare is actually quite common like for example Small Fiber Neuropathy. Its said to be rare but in fact is quite common. What they often report as rare goes off of past studies that are basing big results off of small research groups.
They said that Pineal Cysts and tumors were a rare finding and that they represent 1% of all tumors and growths in this region and claim they are Asymptomatic and try to say if you have symptoms they are in your head. Also Bull Crap. They cause symptoms and they are fare more common than 1% FAR FAR more common and thats according to my own Neurosurgeon. They definitely cause symptoms because they occur in the center of the brain next to many things like for example the Aquaduct which is usually blocked by them causing Hydrocephalus which DEFINITELY CAUSES SYMPTOMS.
You also need to understand that Pharmaceutical Companies have years and years paid Drs to publish false findings studies to support their mass sales and the Drs got kick back off the sales of the meds peddled by them by their makers invited to parties given discounts ect. You cant believe Drs just because they're doctors Ive met alot of overly educated on OLD material still basing their opinions of AGE OLD MATERIAL PRE GOOGLE that have told me to my face I should seek a shrink theres no condition known to man that could cause my symptoms 4 years down the road and I have a stack of Diagnosis's made that matched those. Drs lie. Plain and simple. While some care others dont care at all.
@@ArmaGuyz Thank you for posting this. It's very important and I agree with you.
I have been on it since 2015, for polymyalgia. Perdisone could help more, however i react to it. Thank you for your share. I am glad it works for you. It helps me too
I hope you're now free from polymyalgia! How long did you take Plaquenil and did it take most of the pain away? I'm looking for something to help me get rid of this pain! Or at least some of the pain..
I m suffering from lupus and on hcq for five years and having side effects like hair fall and skin darkening.
Anjana Musafir all my hair fell out within 2months and it's been over a year.
@@Dynamicawareness did it ever grow back?
I started Hydroxychloroquine about 2 months ago, since I am breastfeeding it was the safest drug to start out with. TBH I still feel pretty bad but I can walk around a bit easier, and I do have a little bit of relief in the afternoon where as before when I was on nothing it was constant pain 24/7
I have been using Hydroxychloroquine for nine years. Recently My eye doctor found My retina was toxicated by Hydroxychloroquine. Asked me to stop using it. I used it for autoimmune arthritis. It worked out fine. now, I need to find a replacement.
Eat a 0 carb diet. People with every kind of autoimmune disorders are getting rid of their body inflammation with nutrition. Something doctors know nothing about. I have Polymyalgia and for the last 6 weeks I've been eating a 0 carb diet. I expect to see results in 3 to 6 months. My husband controls his diabetes eating this way. No more insulin for him and his sugar level are perfect every day.
My doctor just prescribed this for me because of rheumatoid arthritis pain, along with naproxen. I’m very scared to take this because of the side effects it mentions with the eyes and hair loss or hair turning a bleached colour
Me too, I'm taking naproxen too often, and the doctor is worried about my kidneys. I got a choice between hydroxychloroquine or sulfasalazine for my lyme arthritis. The hydroxychloroquine is the weaker of the two, and eventually she mentioned trying methotrexate, but that will ruin my ability to have children. Big decisions.
My previously untreated hypothyroidism made me lose about half of my hair. I shaved it and wore wigs because you could see my scalp. It was traumatizing, but I also found out that a lot of people are wearing wigs. It still didn't make me less self conscious in them though. I'd hate to lose my hair again. I guess you weigh the pain from the arthritis with the side effects. Best wishes.
@@jessicah3450 just got diagnosed with RA and was prescribed both the Hydroxychloroquine, Sulfasalzine and naproxen for the joint pain, I hate medications and I’m so scared to take them too.
Cute fur baby, Needed this video, I am 54 , been on little over 4 months now, have you had dry skin, weakness?
I'm starting it today ...twice a day
Hi Samantha,
Let me start by saying I have learned so much on Lupus thanks to you I was diagnosed with Fybromialgia in 2006 and with Lupus just recently about 3-months ago and it's been such a struggle especially when I was at the point where I just wanted to give up on life. But God is good I came across your channel and it's helped me so much I am on plaquenil and I have to say at first I thought it was not doing anything for me but then it started working where I could live with the pain it became tolerable again but now it seems as if it is not working anymore my flare ups are getting worse again and to top it off I feel as if my sight is really being affected I went to see my optometrist and yes she had to change my prescription on both my eyes not too much but I don't know what to think! I'm afraid of what may come next is there any advice you can give me? I am taking 300mg three times a day of gabapentin along with the plaquenil 200mg, Cyclobenzaprine 5mg, twice a day & the Nortriptyline 10mg, Naltrexone 4.5mg & Ambien 6.25mg nightly. Along with 600mg a day of Ibuprofen
Not working for me my joints dilation and damage has gotten worse but since I nonsignificant care and miss management of care I have to take action and go to Johns Hopkins which hopefully soon
Good luck with Johns Hopkins and finding answers! I'm stuck getting tossed around to different specialists. The one thing they did confirm is lyme disease, but this is controversial, and doctors lose their licenses for treating it 😕
Thank you so much for informative video. Can i use this drug for arthritis?
It's commonly used for all types of inflammatory arthritis, my doctor is pushing it for my lyme arthritis.
I took hydroxycloroquine for RA for 7 days and stoped immediately after I ended up in the ER for the side effects. I had sinusitis, the flu, soaring throat and dry cough. All my muscles were weak and my stomach was so painful that I wasn't able to sleep. The doctors in the ER asked me to stop taking it. They put me in antibiotics, pain killer. And anti inflammatory drugs. I regret taking hydroxycloroquine.
I been on it for almost 2 months and just started having sinus issues 4 days ago.
I'm supposed to take plaquenil. The side effects I read was scary. I'm supposed to take it for sjogrens and my fibromyalgia. I'm not sure if I'll take it unless I really need it. I already have some of the side effects. So I'm not wanting them to increase due to the plaquenil we shall see. God bless you and all those who are reading this
How long did you take it before it starting helping?
I was on it for quite some time before it began causing nocturnal seizures. I had 0 side effects until then. But it is extremely rare. It was definitely the cause. After being off for 1 week they stopped. I would not take this into consideration if deciding to take Plaquenil because it’s so rare. It actually worked really well in comparison to the medication I’m on now. I don’t think the Sulphasalazine is working at all. (I have an appointment)
That is a first for me hearing about that. They didn't even have it on the side effect list. If you don't mind me asking, how did you know you were experiencing these seizures. Thanks for sharing!
They’re right as you’re falling asleep. I didn’t know they were seizures until I saw my doctor and talked to her about what I was experiencing. It was like feeling completely trapped, unable to move. There was a lot of anxiety that followed, i was scared to sleep. After I stopped taking it I did some research. I’m not alone.
@@HealWithSamantha That is on the side effect list. Just depends on what website you visit. FDA lists "Convulsions AKA Seizures as a possible side effect.
Also if you just look for Plaquinil you wont see all the results for side effects go to the drug. HydroxyChloroquine It lists seizures as a side effect also there.
Just Google Plaquenil side effects seizures multiple sites talk about inducing seizures including HopkinsLupus.org
Thanks for your very educational video.
Started second trial of plaquinal and I’m having Major side effects which led me to your video. It took me six months to acclimate to the medication the first time I took it so I went off of it for a while and try to do some more natural ways of handling my MCTD/lupus and needed to get back on the medication. I’m in my first ten days and having headaches and diarrhea and my hair is turning blonde...On the other hand it’s the first time I’ve woken up without super swelling in my hands and feet and that’s a great thing I’m just hoping the side effects supersede
My ophthalmologist does my eye checks every six months because my doctor requires that for me to even have the medication otherwise they won’t give me the medication
How are you doing??
I’m 18, recently diagnosed in April of this year & been on ever since
Very helpful! Thank you! I need to get into the eye doctor soon
My doctor wants me to take it for my alopecia so I’m on the research bus. I’m mostly worried about side effects because I generally react bad to everything but Flintstone vitamins. Also, do you worry about your immune system being hindered especially during COVID even though this medication can help COVID patients. And before everyone says that it doesn’t, I know a few people it did help with and it saved the life of one of my friends.
I’m here today for the exact same reason. I met with a rheumatologist just days ago since I’ve battle 30-40% alopecia in 2020 out of nowhere and it’s half back but I’m searching for answers. My rheumatologist suggested I take this hydroxichloriquin to suppress my immune system since i guess my immune system is now overworking attacking my hair follicles. I think my system is already sensitive to everything so I’m cautious on taking this.
How has your experience been with taking this for your AA?
@@justindc3124 I’ve been talking it daily now for five months. I’m doing quite well with it and that’s saying a lot because I’m super sensitive to all meds. While I’ve had a little grow back and decent peach fuzz all over, I’ve also had some new spots show up. I’m supposed to give it until July to see if it’s really working. It’s hard because I have other health issues at the moment that aren’t helping. Any time any little thing goes wrong with my body, my hair pays the price. Just a tip, take it at night because it can make you a little drowsy.
@@seaglassmomma4040 hi are you still taking hydroxychloroquine & how are you doing with it? Thanks
Has the hydrochloroquin effected uour eyes or ears? Pease answer
Thank youuuuuuu for this!! I started taking this and I'm scared of the side effects especially the eyes. And I hate how it slow the effectiveness is going to be. 😭 I wish there was something faster and stronger with not that many side effects. But so far I'm 1 month in and dizziness and headaches I'm getting so far .
I don’t feel like plaquenil did much to help me (been taking it for Sjogren’s for 3 years), but I worry about going off it it and not feeling well!
I’ve been on plaquinil for around a year, I’m 15 and was diagnosed with lupus in June last year and the same as you it was the first drug I was put on I haven’t experienced any noticeable side affects x
Just started last week. I also am tapering down from prednisone. But I also take diclofenac potassium (pill form of voltaren gel)
why do you take it every day now and just how long can you take Plaquenil ? Is there a lemit to how long you can take it or how much?
Plaquenil turned my skin a slate blue color all over my face and neck with itchy bumps. It started with a painful and itchy rash. Twenty-two months of this so far and no relief. I look like a freak and don't want to go out in public. Been to six dermatologists and tried everything, but nothing works.
I hope you stop taking it
I just started this drug for RA. I'm glad I came across this video.
I can't tell what is causing this, but my lymph nodes in my neck keep swelling and I worry it may be an allergic reaction to the Plaquenil. I feel like when I skip a dose my throat feels less swollen but when I take it it gets worse. I may also need to consider environmental factors.
I also feel like (other than the throat issue) it doesn't seem to do much till I stop it and my fatigue and joint pain almost immediately return.
It does make sun sensitivity worse for me as well.
It could be a reaction to the Plaquenil, or maybe it isn't effective in treating your particular medical condition, and you need to switch to another medication. See your Rhuematologist as soon as possible, as swollen lymph nodes can be a sign of more serious problems. It's always best to catch problems earlier rather than later. Take care.
Is that the same as hydroxychloroquine sulfate?
which is more dangerous PLAQUENIL or PREDNISONE or METHOTREXOATE?
is it over the counter ? Just saw that it is very efficient against coronavirus covid-19.
No and no it's a last resort for covid, prescription only, a bunch of nasty side effects.
@@jessicah3450 Most people have no side effects
How did you get rid the inflammation fast since I am in my first week of plaquinel I'm hurting so bad
I have been on Plaquenil, for about 2 months, I just started the medicine. I had keraconjuctivtis sicca before I started taking the medicine.
how many tablet you take i take one tablet no effect for one month