TAKING CELLCEPT FOR AUTOIMMUNE DISEASES | Mycophenolate
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- Опубликовано: 2 окт 2024
- Are you currently on Cellcept? What has your experience been like?
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I forgot to mention in the video that you should always contact your doctor about the best treatment options for you and any questions you may have. Please share your experience with cellcept in the comments below. :)
Hey so was curious have you ever taken Deltasone? It's a Prednisone I was put on by my Rheumatologist I'm a lupie newbie, so I'm so thankful for your videos and learning to cope.
I believe they are the same (therapeutically) but Deltasone is a brand name of the drug (prednisone is the generic name). Learned this in my pharmacology class back in university. You might want to compare the pricing, generic is usually cheaper.
@@HealWithSamantha does cellcept cause weight gain?
I am taking cellcept for an eye condition
I just started on January 5
I have RA. on cellcept 1000 mg daily. Have never had any side effect. All my labs are perfect. I was diagnosed with AIH. I feel alot better. Also on prednisone 5mg daily. I want to be weened off of prednisone soon. I am a happy camper.😃😃
It breaks my heart when I see young ppl going through this. I start cellcept tomorrow. I have Dermatomyositis and I had been on Methotrexate for around 7 years.
Your video has been the first I have seen.
I am sorry you must go through this, however you have a good attitude.
I am sending you blessings and love
Hi , i have polymyositis. Reply please.
I am 15 and I need it for intermediate uveitis caused by vasculitis and I have to take it for 2 years and I have insomnia and stomach pain
At 13 I was put on prenizone I literally whent insane and now I don’t knowe we’re I stand in this world like people be like drugs bad and I be like bitch I bin since 13
Amuno suppressant weeddddd !!!!!!!!!!!!!!!!!!
Im 19 and I've been on methotrexate for dermatomyositis for about 5 years and my doctor recommends switching to MMF. I'm really nervous and would love to hear your experience!
I have been diagnosed with scleroderma, lupus and pulmonary fibrosis I take cellcept 2000mg per day. I take a lot of meds I started cytoxan (chemo)every 4 weeks for 7 mo I just finished that journey. I had to do this to slow down the process. My lungs are being affected... I Thank God for all the Blessings even at my lowest point. I make the best of it... Thank you for sharing 🤗
Hi
I was on mycophenolate for about 9 years with no issues. Last year it stopped working. I have spent the last 13 months trying other immunosuppressive tabs, nothing has worked. Next week I am going to try mycophenolate again.
I have no diagnosis but its 13 years of extreme eczema, bad headaches, inability to walk, shaking and nerve problems etc etc.
I was on 3000mg per day. I'll be going back on that dosage next week.
I'm currently bed bound, covered in rashes that are like extreme sunburn, exhausted but unable to sleep for long because of the pain.
I really hope its works like it did initially and this time next week I am starting to feel like there's a future.
I'm taking it as an alternative to prednisone for a rare-delayed side-effect from immunotherapy of fluid build up around my lungs, abdomen and face. Been taking 500mg x2 a day for a week and I'm pretty fatigued and depressed, seeing my fluid retention go down occasionally but I'm really hoping to see more progress and maybe see my body reset completely.
I am on mycophenate and pnesdone (spelled wrong sorry.) Had lupus for over did to seven years. Had an heart attack and been in a coma and had to go to physical therapy. That was how I had found out about it. Having really been able to keep it good a job because of in always sick and dizzy and tired. And always feeling weak. Went from 170 pounds to 135 pounds because of the meds. Doing a little better now.
I’ve on cellpept since January. I have stage 4 kidney disease. There’s been no changes in my kidney numbers since starting treatment in July 2020 Side effects are horrible right now. Diarrhea and having to have blood transfusions at least once a month have been the worst. I really hope I don’t have to go back on dialysis again. Good luck to all you!
Hope u get an Organ fast.
I will pray for you 🙏♥️
I've been on mycophenolate for 2 years now. Just want to say for those of you who are having GI issues that are intolerable... Ask your doctor about switching from Mycophenolate mofetil (Cellcept) to Mycophenolate sodium (Myfortic), which is the more GI-friendly formula of mycophenolate. It has a special time release, an enteric coating that doesn't allow the mycophenolic acid to be released until it's in a more PH-neutral environment, i.e. the small intestine, so it's more gentle on the stomach. I switched from one to the other after about 6 months and it's much more tolerable. Even my endoscopies before and after the change showed a big improvement in gastritis.
Circle of Leaves thank you for this information 👏🏻 I’m currently having GI problems so I went from 2000mg to 1500mg this past week
@@allysonduarte7515 Glad to help. I started on 1000mg, went to 2000mg, then 3000mg. Couldn't handle it so dropped back to 2000. Continued to have issues so switched over to the GI-friendly formula.
I'm taking cellcept for polymyoitis on& off for the 7 yrs. I've through all the meds on the book for polymyoitis .I'm back on it this week for chemotherapy is too harsh on my body ,it put me at risk for higher infections during Covid. My experience with cell cept is needle like feelings shooting through my heart, diarrhea. I rather take it the ivg,chemotherapy and steroids. It's not easy 😕 gotta do what's best for my health at 46 yrs old I have so much to accomplish.
I’ve been taking cellcept for sarcoidosis along with prednisone for about a month. The only side effect I’ve really had is upset stomach.
I have a kidney transplant as well and I take cell cellcept and Prednisone as well
My rheumatologist tried that. It made me projectile vomit. I only took it for a week. God bless you if you're able to take it.
Oh god no don’t say that it’s my biggest fear and I start cellcept tomorrow
@@melody8349how are doing now with cellcept. I too have a fear of vomiting, and I start tomorrow as well😢
Hi! Diagnosed 6 weeks ago with sjogren disease and was started on plaquenil and now cellcept 500mg twice daily. First day after taking it headache started. Already noticing hair loss 😞 I have no choice but to persist. I’m a full time RN and to afford my meds have to keep working even though I am now 65. Will fight on and not complain …. My husband was diagnosed with PD 4 years ago and he’s my inspiration. Always positive and working full time at his own business. Today is my Indian new year ….. so Happy new year my Indian friends! It’s going to be a great one! Best wishes always to you! Thanks for your video
Hi! I also have Sjrogen disease. I have been on Hydroxychloroquine for a little over 1.5 years now, but my doctor is going to start me on Cellcept tomorrow. I came across your comment and saw we share a lot of similarities, including that I am also an RN! I wanted to see how you are doing? And how you are feeling after starting Cellcept? I hope all is well!
I'm on cellcept 500mg once a day + methyl prednisolone for 4 years now because of my lupus. And this so far I have no problem with it, or so I thought.
I was diagnosed with orbital sarcoidosis which was also revealed in neck lymph nodes. I have been on 10 mg prednisone with no side affects for a year. That said, the inflammation is not being controlled with that dose. My doctors want me to take MTX (methotrexate) I found research on MMF which appears to be more successful for my diagnosis. I have not decided what to do yet.
I was recently diagnosed with lupus (2 months ago). I am watching your video because I’m going to start Cellcept soon. Congratulations on being steroid-free by the way. I’d like to get there, too.
When I was diagnosed, I had pleural effusion - fluid in the space around my lungs, which made it hard to breathe. Fun. The doctor started me on very high dose prednisone (PSL) to “put out the fire” and since then I have started on other drugs like hydroxychloroquine (HCQ) and tacrolimus (TAC) while tapering off the prednisone. Unfortunately symptoms came back, so my doctor said I’ll start on (as in add to the current drugs) Cellcept and Benlysta next week. Obviously the current drugs aren’t doing enough - apparently except for the prednisone they all take many months to build up their effect, so maybe in the long run I don’t need all of these, but I’m eager to get my prednisone down to a less insane dose.
The side effects you mentioned - diarrhea, upset stomach, nausea, … I tend not to get those too much, so hopefully I will be able to manage them. I think you said that you got used to it after a while, so hopefully that will be the case with me, too.
Thanks for making this little video. Now I know a bit more about what to expect when I start the drug.
I was Just Diagnosed with Autoimmune Uveutis and i am going on this
Ive been taking cellcept for 3 years for Myasthinia Gravis, along with steroids and IVIG.
On my second kidney transplant..
I received my first at 20
Just received my second in 2017 doing great
and and fully functional 😁
Started Cellcept 2 months for Cardiac Sarcoidosis, 1 gram two times a day. I really dislike the heat generated around my head, ears get hot.
How did they diagnose you with that?
I’m on Mycophenolate too, 1000mg a day. .+ Hydroxychloroquine. I have had to stop and start it so many times due to infections though. It is hard to be consistent with it. 😣
After my Imuran stopped working I started on Cellcept.. been on that for 2 years and I am now in remission! Nausea, hair loss ..dizziness are small prices to pay for remission in my opinion 🙂
Jessica Ortega that is wonderful! Did they end up taking you off cellcept once you went into remission?
How is your health now?Are you still on cellcept? how is your hairloss?
@@naina6516 there’s good days and bad.. going on 10 years with lupus.. still on cellcept and that’s what controlled my lupus and lung damage mainly. Hair loss comes and goes, I’ve been bald twice but my hair grows back. A rheumatologist tried to take me off cellcept and I didn’t react well to that.. she was projecting wanting kids onto me I guess 😒 glad she moved away lol
Did you apply anything g specific to your hair I am becoming bold as well😟
None of that is small.
Been on Cellcept for almost 2 years for my eye condition called CRION. The main bad thing about it for me was fatigue and insomnia :(
How has cellcept been working for your CRION? I was just prescribed cellcept for CRION as well.
@@youkendehunique6317 , we’ll. For the most part good. I’m almost 3 years without an episode.
@@glennsanta That’s good to hear did you have any side effects and how many mg are you on? Do you take it with food and the capsules at the same or different times? I hope you continue to not have any episodes.
@@youkendehunique6317 ,500mb twice a day before food .the only side effect for me is fatigue.
@@glennsanta That’s awesome great to hear I hope all goes well for you, I am wanting to start my CellCept this week. Are you worried about the long term side effects of CellCept. Also are you able to maintain a career/work on it do you feel it has increased your quality of life.
I've been on Cell Cept for over 10 years now to treat Lupus and lupus nephritis. I've tolerated it well except for when my team try to wean me off. I was able to come off once but my kidneys flared up again and I was put right back on. It happened again a few years later, I did not go completely off but tapered down and flared up again. I've been on 1500mg two times a day at the highest and was on that dose for many years. Currently I'm down to 1000mg twice a day. We are doing a very slow taper this time which seems to be going well. My blood work is monitored every 3 months and I see my Rheumatologist every 3 months as well. I see my Nephrologist about once a year now. This drug has certainly been a life saver for me.
How worried were they how about your organ functions and risk of cancer at 3000 mg. I'm on 3000 mg and my doctor's want me to go lower at a fast rate.
@@hpwrotethis hey , does it cause weight gain?
@@nitudekabezpara8678 due to fatigue and it being an anti-metabolism drug, it can lead to a lot of weight gain
I take 2 500mg 2 times a day along with my other meds I had stage 3 kidney nephritis and I have lupus so it’s been working great
Sarah Jeanette that’s what I take and no problems
you can use MMF 500 mg tablet ?
Hi did you gained weight.
soha204 I did gain weight when I was on prednisone, so far now that I’m off of that I haven’t gained weight. Taking the pill can make it harder to lose weight but so far no Issues
@@sarahbentley6162 thanks for reply 😃
I've got lupus in kidneys joints and god knows where else taking 1000mg of mycophenolate and 60mg of steroids too, sucks because I'm only 23 and I've never been had any diseases or anything my whole life! Had kidney biopsy last week feeling pretty unlucky atm always been fit and into sports hope I can start doing it all again sometime
Hey Michael! Don’t worry, it all gets better as long as you stay on top of Lupus. Recognize your triggers and avoid them. Also do not stay on steroids for too long otherwise your body becomes dependent on it and you will never be able to get off! Prednisone is more evil than good!!
I'm 26 been taking this medication daily since I was diagnosed with kidney disease at 19. Once I was able to get off steroids life got a lot better. If I take my medication regularly and try to be relatively healthy I hardly notice it today. Hope things are better for you by now
Hey guys thanks for replying I'm now down to 5mg of prednisolone a day and still 1500mg of mycophenolate every 12 hours. Not sure when I will be off the pred I've not had any lupus symptoms since taking it apart from being tired more easy don't know when I will be off it as I had loads of pain in my joints to the point I couldn't walk so God knows when il be off it 🤘
I been on 2000 mg a day . For a week tomorrow . Im so swollen . My legs feel stuffed with sand . Ive experienced burning in my stomach . Waiting on my dr to return my call. I hate it so far
Thank you for uploading! Actually you just told more about this med than my doctor. She just printed a paper. Well ive been on it for over 5 months now. Supposed to take 2 grams, but it caused so much side effects that its down to 1 gram. Wegeners is getting better though. About the side effects.... so far i hate cell cept. Massive insomnia! I cant sleep at all without sleeping pill. Also it seems to affect a lot how my brains work. Everything is so slow and cant really focus on anything.
Cheers!
I’m taking cellcept for myasthenia gravis 3 years now
Yes I'm on Cellcept and its 1000 mg per day. Its been a year and so far I'm not experiencing any side effects except a little brain down. Concentration and being in absent mind what I'm facing right now. You said lot of things about its effects on women body. What are the effects on men's body ?
I’m taking myfortic which is the same as cellcept but it’s a coated pill so it’s more gentle on the stomach. I hate the food restriction part of it. I’m currently at 4 pills a day but since it appears it isn’t working so well the doctor said I might need the max dose of 6 pills a day.
I’ve been on cellcept for 6 months, 1000mg a day. I’ve been diagnosed with churg-straus syndrome (EGPA). It’s supposedly an alternative for me because I can’t receive my correct medication which is NUCALA (due to insurance). However my side effects include headaches and stomach problems. My diet is very healthy, im curious why I’m experiencing stomach problems?
I also wanted to mention that currently my lupus is pretty severe so my doctor wants to start me on cytoxin.... wondering if anyone has experience using that? Currently i am taking prednisone, methotrexate shots, benlysta infusions, and plaquinil.
I was on Cytoxan chemotherapy when I was in a really bad Lupus flare at age 15. I had it once a month for 6 months. It definitely helped me, but it really sucked while on it. Lupus patients don't get as much as cancer patients (or at least I didn't), but I lost a lot of hair. I wasn't bald, but it was so thin, and when I brushed my hair it would come out in clumps. You feel really nauseous after the treatment for like 3 days (I think, that was 3 years ago).
Hi. I got my diagnosis sjoegren syndrome 3 weeks ago. I’m using cellcept 1000 mg at the moment- should be about 3000 in the end. Also I am high on cortisone because of my horrible blood results. Started with 250mg-80mg- now 60mg.
I have be diagnosed with Scleroderma, never knew men get this but this drug is coming soon as soon as blood work comes back. Right now I'm in such pain and discomfort. I believe dying is a better option as my joints and skin are so bad and getting worse. But if it helps give me close to a normal life I guess its worth it. Bless everyone.
My holistic dr changed my diet and added ALL liquid supplements were a game changer. I know big pharma wants to make money but lupus doesn’t appear in my blood anymore
My brother has scleroderma. It is a horrible disease. He was 39 yes old when diagnosed, now he is 73. He has systemic scleroderma. Completely bedridden. 😢😢
Started 2 tabs of cellcept 500mg in morning and 1 tab at night.
I have cardiac sarcoidosis and am on Mycophenolate 1500mg 2x daily and prednisone. I am sooooo freaking sick from this Mycophenolate. I can’t stop pooping. I can’t eat. I’m nauseated. I am exhausted. I am dizzy. Ugh. Lord help me
I have been on CellCept for almost 3 years. It has been the only immunosuppressant I’ve tried that hasn’t caused side effects. It seems to help control my symptoms somewhat. I take 2 pills twice a day, so 2000 mg a day I believe.
I hope this goes the same for me I start 750 mg tomorrow.. a little nervous.
@@melody8349 how's it going? are you still on CellCept?
@@KishBish yes I am and I have zero side effects been on it for a month now I’m so happy!
Hi, I have been grateful to find your videos. I was trying to find the reason you had to stop Benlysta. Did you start to have organ damage? I was on Cellcept (360mg extend release 2 tabs twice daily), but had strong side effects. I am now back on plaquenil and started Benlysta. So far so good. So, I was just wondering.
Have been on mycophenolate for 2 month after having IVIG for three years (for Myathsenia gravis) can only walk 3 or 4 days a week ( due to osteo, left knee or rhematoid arthritis) Have lost over 40 pounds in 7 weeks, because I can only taste about 30% of my food. I only eat between 1000-1200 calories per day, because i simply dont want to ( morbidly obese 260 pounds now). Arm and leg weakness but that is most likely the arthritis. Mayathsenia appears to be in remmission after Chemo ( but clinicaly that will only last another 7 or 8 month) Hopefully the mycophenolate does its job by then ( takes 3 - 4 months to kick in).
I started CellCept today. 500 mg once a day for 2 weeks. Then same amount, twixe a day for 3 weeks. I am not diagnosed yet but I have a positive C ANCA and some other test indicating inflammation came back high. I experience inflammation in my eyes so badly that I cannot function without medication. I took prednisolone for months but the Dr wants me to try CellCept nlw so I hope it works as good as the Prednisolone. I hate Prednisolone because it makes me gain weight.
I'm daily 750 mg cellcept taken twice
my girlfriend has Lupus and has just gotten this med is it the best med foe for Lupus
Im on cellcept 1000mg twice a day but having a pimple kind of rash few hours later on my face and neck.
hi, I have myositidis with artritide and big problem with lung becouse of it. Woman 40 years. 2000! mg of cellcept per day.combinated with biological Now half year. For 5!monts I had a cold but now I'm healthy. And my horrible horrible tired from myositidis is much better. Awesome but lung is still the same like at start. And I.m loosing my hair. Half! hair is gone for 3 mont. I have a lot of hair in normal. doctor said me that I will loose a lot of hair in next 3-6 month😢 a lot...so ....
I am forever grateful for your channel, you explain things in such a way that it's easy for me to understand. I've officially passed the one year mark from my diagnosis, I used to take 1,000mg twice a day from the beginning and for the time I spent on the hospital getting stable it made me really sick and I would always throw them up, after getting three dosis of rituximab my rheumatologist lowered my dosis to 500mg twice a day and that is what I have been on for the last 5 or 6 months ago, slowly improving my health. Blessing!❤️
Keishla Cruz you’re getting there. Glad they helped you make an adjustment that worked for your body! We are all so different.
Hi Samantha, been on cellcept for 6 years. I take 1000 mg a day. I get headaches all the time from it. Im sure I've had many side effects but cant really remember because I've been on it so long. The biggest side effect I have right now on meditation is plaquenil and know you made a video recently on it. My doctor higher my dose to a pill half and as soon as I switch to a higher dose my hair started falling out alot. Im curious if you or anyone else is dealing with hair loss from it. Anyways, I always enjoy your videos, you're such an inspiration. ❤ Heather
was on Plaquinil and eye exams indicate retinal effects and was told to stop it
I'm on it and I HATE it! Makes me so sick. I take it for my full body Sarcoidosis. I'm on 2,000 mg a day.
I had a kidney/pancreas transplant in November of 16'. After 5yrs of Cellcept I started having GI issues and was switched to Myfortic(easier on the stomach.) It has helped a little but not a whole lot. Here's the attitude that I have now taken and that I tell myself every single day. SUCK IT UP BUTTERCUP! I also tell myself that while I deal with these side effects my donor would surely rather deal with these side effects rather than lose his life. I oddly find myself thanking God for the opportunity to have the shits here and there and feel light headed and nauseous multiple times a week rather than the other outcome. I understand not everyone deals with the transplant side of it but if you're taking Cellcept for any medical condition you're on it for a good reason and unfortunately it nothing more than a necessary evil. Sure it sucks that we have to go days feeling like crazy when we were hoping that taking a certain medication would make things all better but that doesn't erase the fact that we have serious health issues and taking a specific pill will ever stop that from being the case. Remember, there's always the alternative.
I have hypersensitivity pneumonitis and eye issues. I started Mycophenalate in march. No flares. Awesome oxygen sats. No sob, improved dry eye… but trying😂 to increase dose to 1500 mg..My rbc’s and hgb levels are lower just at abnormal.. but I start to feel sick Like I am going to pass out. When I go back to 1000 mg do well. Right now trying to titrate dose back up .. I did go on Prilosec which helped my stomach… hoping I adjust.. this med has been better than prednisone for me. Have more energy and no breathing issues.
I have Lupus SLE and have been on Cellcept since December 2015, so coming on 3 years. I take 500mg twice daily. I don't know if I had any side effects because I was in rough shape, in a lupus flare after just having two seizures from a blood clot in my brain. I started all kinds of new pills at that time, so I have no clue what side effects I had. The one thing I know for sure is that I have really bad headaches/migraines, right now I'm on CellCept, Celebrex, and Plaquenil, but I don't know which medicine causes them if any.
I want to thank you, Samantha. Although I take this drug, I really didn't understand what it actually does and all the possible side effects.
How soon were you able to recover from the blood clots occurred on brain?
@@greenababu365 I had to take blood thinner shots twice a day for 6 months to shrink the blood clot. It worked! Now I have brain fog a side effect from the seizures, but it fluctuates in intensity based on the day!
I have been given Mycophenolate since finding out I have autoimmune hepatitis (liver). My body rejected Azathioprine and I’m nervous. Only diagnosed 4 months ago following high ALT and biopsy. To the professionals surprise as I was dismissed and told it’s probably just fatty liver 😢
Thankfully I had the biopsy or it would’ve been missed all together but least I know why I feel so unwell with no energy most days.
I’m not sure what the doctors plan is as it’s hard to get them to even see you.
Was given a prescription over the phone and no guidance relating to dos and don’t.
I’m worrying so much and I have a 2 year old that needs me.
Any advice it’s extremely appreciated x
im always constipated since ive been diagnosed with lupus and taking cellcept. my stools arnt the same
500 mg 2 tablets 2 times a day! I have been on cellcept since I’ve been diagnosed with lupus 3 years ago. I assume it’s working along side my other meds I take because I haven’t had problems with it.
Do u hv any flare up
Being diagnosed with lupus profundus, I had been on cellcept for a month and it dug holes in my face; my face just turned into this ball of bloody, pink holes! My doctor said never in his career has he ever seen it! Anyway after two years i resumed it and now i am on 1500 with no such consequences. Can u please please please make a video on Rituximab??
Fariha Amber planning on doing one of those in the future!
I just took this again today I feel so weak it’s hilarious
I am currently on 500mg bid Cellcept for SLE and I am sicker than a dog and extremely weak to the point I can barely stand up. Many trips to the bathroom, a headache that won't subside, I am so nauseated - constantly on the verge of vomiting....this is my 3rd day without eating. Will the side effects go away with time? I don't think I can do this anymore. 🤢🤮 😥
I was doing fine with Prednisone. (15mg qd)
I'm sorry to hear this! are you doing better now? I had the same with Cellcept 500mg.
Hi Samantha! Great video. I was on 1000mg mycophenolate 5 years ago but am on Rituximab now. I remember not adhering to it that well because of all the symptoms you mentioned. I'm happy with the Retuximab but my consult wants me back on mycophenolate just as you've released this video. Yikes!! Conspiracy or what??!?
*consultant
Btw have you done any videos on Retuximab? I've been searching through your videos but I can't seem to find one on Retuximab... Please, please make one. It would be good for me to gain knowledge on the drug outside of my doctors. Thanks for everything.x
Aziza K that is a great idea. Although I haven’t had personal experience on it. I may be taking that in the future.
@@HealWithSamantha Kelle Bryan from the 90's English band, Eternal, manages her lupus with Retuximab. At the same hospital and Consultant as me! And my body has tolerated this Retuximab treatment better than any other lupus treatments. And I think I tried all of them since being diagnosed in 2010 and Retuximab was the last resort for me. And you don't have to take it as often, depending on how your body responds to it. I took it four times in 2016 as a start up dose, I got a break in 2017 and 2018, I took a lower dosage once. I heard Selena Gomez was taking chemotherapy for her lupus in the past. Maybe it was Retuximab? Take care Samantha, I wish you the very best in health and happiness this 2019.💕
i just started mycophenolate 2 days ago since azathioprine doesnt do much on my nephritis. i hope i get better results on my urine protein creatinine ration after 2 weeks 🙏 so far no side effects except for upset stomach.
How are you doing now ? Actually I just started it with the same dosage as yours for my nephritis.
Avoid interactions with thick people 😳
autoimunziekte en sinds vorig jaar inplantaat.ik kon niet meer horen.ik ben er erg ziek van.nog tot 2025 in nemen.
I have scleroderma and im using cellcept 500mg
hi there my sister has lupus for a bit over ten years and now I been diagnosed with RA I'm taking methrotaraxe and prednisone I just switch to the auto injections it works good but I'm having hard time sleeping also I got tinnitus on both ears not sure if its the drugs or the RA its self. did you have any insomnia or ringing in your ears? I hope you feel better wish you health
I was just switched from Methotrexate to Cellcept. The Scleroderma/Crest started attacking my lungs and Cellcept does help. We know there is a crossover autoimmune disease, at least one, but not sure yet. Sucks having to take it twice a day. lol 2 months so far just started my 4th pill 2000 mg. So far nausea stomach pain, headaches, feeling sick insomnia. But those went away with the methotrexate so I’m hoping these do too. Thank you so much for this video sweetie. Praying things go well with you. I’m 64 and you’ve had the scleroderma since the 90s. Already infected digestive track, peripheral neuropathy, small nerve and small blood vessel disease. They didn’t know as much back then so I’m hoping you have better results. God bless you sweetie
I see you wrote you have small and medium vessel vasculitis. Did the cellcept work good for your vasculitis. How long did it take to get into remission and how long did you have to stay on it? Thank you.
Hi! How are you feeling? With CellCept? Are you taking methotrexate?
Thank you. Warm regards
Methotrexate damaged lungs. It did mine
I was put on cellcept for the first time about two years ago my body reacted horroble to it. Extreme stomach pain, nausea and trips to the bathroom if you know what I mean... since then only when I flare I go on a similar drug myfortic which is essentially the same thing. Both the cellcept and the myfortic cause extreame pain for me. I lost over 10 pounds in one month on myfortic. I am looking to get a kidney transplant sometime soon and they say I have to be on that pill for the rest of my life.. scary but I know with science today hopefully some other option can be taken
I'm using this drug for low platelets. That is ITP disease. Side effects are fatigue and light headache. Pls recommend if there is any best treatment for ITP
I started today with cellcept but I was informed that it’s ok to take it with food to lessen stomach pains.
I’m starting this drug. Dosage will get up to 750mg and I’ll be taking it for primary antiphospholipid syndrome
Amazing video!!! I was just put on Mycophenolate Mofetill 500mg by my consultant. Kind of reluctant to take this drug after reading about side effects. Fingers crossed....
ShutterRelease | PhOtoGrApHy best of luck. 500mg is a lower dose so hopefully you adjust okay!
Correction @LHL , It is 3000 mg a day. 3 in the morning and 3 in the afternoon. I am a stem cell transplant patient or can I say a survivor 🙏.
I am on Adaport . Post transplant I had GVHD in my gut , liver and skin. So my consultant had increased the dose to control it. It couldn't save my skin though, as I have ended up with pigmentation in my skin. Now my liver function is off the marker. Steroids isn't clearing it off hence the introduction of the new immuno suppression.
Can I ask what the risk is for liver damage? Is it as high as methotrexate?
I just started to take cellcept about a week ago. And since the medication mention no sunlight or artificial exposure, I wanted to know how do y’all do it? Do you not go outside of the house or how does it work.
i know this is a 2 year old comment but just incase you still wanted to know! you need to wear spf 50 sunscreen, don’t forget your ears and even your scalp! wear hats, clothing is the best protector so wear long sleeves and pants if you can. avoid the sunlight around 11 am-1pm which is its strongest (i know that’s not always possible with life and work). remember that sunscreen expires!! check the date to make sure. and reapply your sunscreen every 2 hours or sooner if you rub or wash any of it off
Autoimmune hepatitis - azatioprine
I am taking it for Mysthenia gravice disorder which is an autoimmune disorder, taking mycophenolate to help of being able to reduce the Prednisolone which has a lot of bad side effects. I am on it for about 6 months now and took 500mg at the beginning for around 3 months and now on 1g for about 3 months, but I don’t know for how long and I haven’t got much of a side effect just very little headaches, but I have been researching and heard it can cause infection in the brain and that makes me very upset and worried, but I believe it’s benefits are greater than it’s side effects.
Hey Samantha
When do you recommend taking cellcept. Morning or afternoon. Do you break it up throughout the day if the dose is 2000mg for example.
I was on cellcept and myfortic back and forth for about 2-3 years... i still have my kidney i just have stage 3 kidney nephritis... i did not enjoy the effects either
I am also on myfortic since 2014 and i am okay with it because i reacted allergic to retuximab and cellcept.
I Also have lupus nephritis class 3. And uses 1,5 g morning and 1,5 g night off cellcept .. my menstrual cycle has been ruined because off cellcept.. i have my period up to 3-4 weeks att a time and 2-3 weeks without... and my illness is wors when i have my period... so i hope i don’t nerd cellcept all my life😓#tired of sideeffects. ( sorry for verry bad english😂)
rosa 23 my doctor wants to put me on cytoxin or retuxamib. Right now i am on methotrexate and benlysta. I heard from other people as well that they had allergic reaction to retuximab so i am a little bit hesitant but if that’s what i need to do i will give it a try... what was the allergic reaction that you experienced if you don’t mind me asking? Thanks for letting me know!
Kristine Øvretveit yes! It messed with my menstrul cycle as well so I completely understand!
Lewis Jose Hernandez Jessica Lewis Patricia
Headaches, nausea and stomach problems I don't care for c.c. The doctors said lab work has improved. 3 mornings 2 nightly, I hate this medication I wish I was off. Hope I'm not a Debbie Downer it's my truth! I pray I get off it soon!
I totally understand ur comment. Pulmonologist wants me to take. Ive already had lymphoma a kind that comes back. With my luck it’ll reactive n I’m screwed again. Best of luck to you dear. Good luck to all of us
Works for me. Was on 3,000 mgs per day for my Dermatomyositis, now down to 2500. No perfect, but keeps my inflammation and or Flair on simmer. I carry a prednisone taper down whenever I go on vacation.
Hi Samantha did you take these Tablets after eating Food of or before eating food? Does the medicine hurt your stomach?
I was on cellcept for about 6 months last year and it made my lupus 10x worse than anything. I had flare ups constantly, i also had to get bloodwork every month while on it and I was way more tired while on it. I finally went to my doctor and told her I couldn’t do it. I’ve just stuck with the benlysta and that’s help enough for me. 🙂
celll sept is tearing apart my stomach. I have now Pulmonary fibrosis. They blame Lupus. Prednisone is ok.
my research is that Cellcept can adverse reaction of pulmonary fibrosis
I was diagnosed with ITP and SLE, and I am taking MMF for the past 4 years. We are all warriors.
Hey
I have been diagnosed with scleroderma... Are there any side effects from mmf? I was taking since 2k18. My brain got so much damaged. I got nausea. Lost concentration... Not able to connect with brain.. Body.. Coordination issues.. Tremors.....! I switched to azathioprine for 1 year.. But now again on mmf
@@bystudy8041 Hi, I also had side effects including nausea, mood swings and diarrhea, but from my medications I realize that the continuous use of mmf will make those side effects vanish. First of all, you need to control your disease with medications.
I am continuing the medications... I hope the side effects goes soon...!
I also have ITP and SLE! Got diagnosed in February…It’s a hell of a ride, that’s for sure. Stay strong.
I am taking it for my eyea
What happened to your eyes?
So I started on cellcept the first time I was diagnosed with lupus the rhuematology blood counts we're really low then I tried azthioprine which did the same thing then I tried rituxian which Dr said was not doing anything so I settled on benlysta which has been helping me
I've been on cellcept for a year till now I take 2000 mg a day but no side effects
I was diagnosed with sarcoidosis 4th stage prednisone treatment and now I start on cellcept 500mg twice a day to start then 1000mg twice a daily I'm kinda nervous of taking this med but its needed to control my stage of sarcoidosis which is damaging multiple organs I'm my body
How do you feel now?
Overwhelmed... Pulmonary Fibrosis.. autoimmune regulation.. haven't actually started this yet.. but it's coming in a week or so. 😮
who is a good reference for this drug? I dont want to publicize my experience. Can I write to you
VERY important.
I’ve been on cellcept for 3 years. I started out on 3,000 mgs. It helped get my symptoms under control for a while after my first flare/ diagnosis. After a period of time I realized it just wasn’t as effective. My joint pain was pretty bad, I had bad dizziness, low blood counts. I decided to change my rheumatologist because despite my symptoms, she was reluctant to let me try Benlysta. Now I’m down to 500 mgs and on Benlysta. I’m getting ready to start a family once I’m completely off for three months. 😊 My TMJ has been acting up, but overall I feel much better in terms of joint pain and fatigue. I was wondering what made you stop taking benlysta?
Kim G I stopped Benlysta due to a rash (which I found out later wasn’t the Benlysta) and insurance issues as well. Miss that drug. Best of luck with starting a family! One of the things I hope to do one day as well.
Live Hope Lupus Thank you so much for replying. I means a lot. These drugs and their side effects and risks can be really scary ,especially with Benlysta being a newer drug. Thank you, hopefully one day there will be some baby bumping videos on your channel 😊
And I take 2000 mg daily
I started taking mycophenolate over the 2 days. I have BOOP pneumonia which is considered to be autoimmune disease. So far I feel normal but will do a blood check in 2 weeks. The plan is to completely stop taking steroids.
I was put on it when I was in the hospital in June for acute renal failure, they weren’t 100% sure if it was lupus or not but they still wanted to put me on Cellcept. I was officially diagnosed with SLE in September and went from 1500mg daily to 2000mg daily but I’ve been having a lot of GI problems so I went back down to 1500mg this past week.
ive been on micophenolate for 14 years 3x a day , now they wont me of my whole bodys gone overdrive , chronic urticaria all over bodys full of welts & red 🥵 very unpleasant as my body is fighting it self ,& hot weather coming l don't😮 think l will make it two January on one, don't know what two do ,it gets unbearable, like falling in a nettle bush & can't get out 🙃🌹
Hi, I've just seen your video, and I'm on 50mg of cellcept. I take 5mg of prednisolone in the morning and 50mg of cellcepg in the evening. Personally, I'm not enjoying being on this medication, I have experienced awful headaches like electrical shooting pains that would suddenly accur and my hair is thinning. Is anyone else experiencing this? I want to come off this medication and go back to just a small dose of prednisolone. Kind regards Maria x
Hello I have been a subscriber for a while now and I am on 500mg of cellcept 3 in the morning and 3 at night. Love your videos and thanks for being our voice
Ooh I have FSGS and I have to take it two capsules two times a day
I am new to cellcept but have been taking it for one month. Like you I HATE it. My stomach is swollen and hard to the touch. Is there anything over the counter that makes you feel better as no nausea feeling. I have not slept for three nights. I am so glad I found you. BY
I’m also curious why you stopped benlysta and how do these two compare in terms of controlling symptoms?
I´m on 2500 mg Cellcept every day and it helps me a lot!
Sideeffects I had only at the beginning. I take Cellcept since 2 years and I´m happy with it :)
But I also need Prednisone , at the moment 12,5 mg.
Best regards from Germany, Milka
Are you continuing predisone for 2 years as well? What about it's side effects?
Hello Worrior Queen, I am glad to see you consistently choose Life! Never stop Dreaming! Hope is the essence of Faith.
I was put on Mycophenolate in June this year but i had a severe reaction to the drug Physically and Psychologically. I stopped taking them after 1 week. I am now on Azathioprine and it is keeping my immune system under control. I have subsequently been given a diagnosis of Discoid Lupus and Azathioprine is the correct mediation for treating Discoid Lupus.
Azathioprine made me so sick and now on Mycophenolate. Thanks for responding about side affects.
Myositis is another one