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. :)

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.😃😃

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.

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

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!❤️

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.

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 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'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.

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

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

thanks for clearing things up my mom just been given the medication shes on 500mg and asked me to look it up that's why am here. hope you feel better soon stay safe :)

On my second kidney transplant.. I received my first at 20 Just received my second in 2017 doing great and and fully functional 😁

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 started today with cellcept but I was informed that it’s ok to take it with food to lessen stomach pains.

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

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.

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.

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 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'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.

Yes I take Mycophenolate 1000mg a day for RA and RA Vasculitis. I failed many meds. Used to be on a much higher dose until I came down with a severe respiratory infection.

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.

Another great video, you really are helping

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. 🙂

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!

Thanks so much I started on cellcept for SLE last week this answered a lot of questions. I was on methotrexate for two months but it wasn’t regulating me as much as my rheum would like so they switched. Thank you for this content it’s scary navigating as I was recently diagnosed

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´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

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.

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

Just started Cellcept becaue of nonspecific interstitial pneumonia. 56m. So far there have been no side effects. Twice a day increaing to a 1000

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.

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. 😣

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.

I was diagnosed with ITP and SLE, and I am taking MMF for the past 4 years. We are all warriors.

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 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.

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 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 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.

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 🤗

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!

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

Im on cellcept 1000mg twice a day but having a pimple kind of rash few hours later on my face and neck.

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....

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.

Where were you 15 years ago lol. Was like 15 when I started cellcept for lupus. Big o 800mg tabs. They did suck for awhile. Now I'm back on it for heart transplant. Kinda worried bout taking it again. That's why I'm here lol. Great video.

Yes i just started cellcept for my sle lupus 250mg 2 times daily, i hope it helps better then methotrexate.

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 🙂

I’m starting this drug. Dosage will get up to 750mg and I’ll be taking it for primary antiphospholipid syndrome

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

I have Iritis anf have been on everything imaginable. I have been on Mycophenolate for some time now. They wanted to change it again to Humera, but decided to just up the dosage. My symptoms are mild. Sometimes I get dizzy if I don`t eat enough. But that`s about it. It seems to keep my flairs at bay

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.

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 ?

Can I ask what the risk is for liver damage? Is it as high as methotrexate?

Ooh I have FSGS and I have to take it two capsules two times a day

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.

I’m also curious why you stopped benlysta and how do these two compare in terms of controlling symptoms?

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

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.

hey little sis hope you are well thank you for what you do for others if you will tell others about arava leflunomide if you have not already done so thank you little sis

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.

I have nephrotic syndrome and been taking cellcept my entire life since I had this illness

Hi Samantha, My name is Ida and I was seening your video on Mycophenolate and was just thinking about calling my Dr tommorrow to let her know the side effects that I have been having are a little alarming . They put me on it for my lungs, I have RA for over 30 years and the flairs have effected my lungs and have scared them. I am on prednisone 10mg and still working on going down to 5mg and hopefully to 0mg. I'm also on hydroxychloroquine (plaquenil) , I started with the Symponi-Aria and it does seem to help, its been my 3rd infusion and I feel its been helping. I went in today for my 3rd one and I felt almost my self, with energy. The Mycophenolate has been giving me side effects with my breathing, swelling on my neck my hands, hearing my heart beat in my ear when getting up and walking foggy brain where I can't function like I use to. Taking 2 hour naps even thou I wake up at 11:00 or 12:00 AM And I never did nap. I feel I dont accomplish anything, you said you went down to 1000 a day maybe I can do 1000 a day should I let my Dr know what can you avice me Samantha I want to do the right thing for my lungs?

Hi Samantha did you take these Tablets after eating Food of or before eating food? Does the medicine hurt your stomach?

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.

I have giant cell arteritis and polymalgia rheumatica. I have had a horrible time with trying to come off steroids and my doctors say the prednisone is doing more damage than anything. I am weighing the difference between taking or not. Do you find it has helped you

im always constipated since ive been diagnosed with lupus and taking cellcept. my stools arnt the same

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've been on cellcept for a year till now I take 2000 mg a day but no side effects

I been taking it 6 months since my kidney transplant.. the doses 500 morning/500 evening Anyhow this medication has strong impact in the stomach I just can’t put up with anymore

I have had a kidney transplant back in 07 still Here thanks to the good lord. Once you get used to it it’s ok.

I’m on MMF too for my lupus, I was put on it last year when I was 15 and just diagnosed after four years of being extremely unwell x I’m also on hydroxychloroquine, steroids and rituxumab

Hey how are you, I have a different type of auto immune, I was thinking and I don’t know what your idea is about tecrolimus, please tell me your thoughts, it’s also a non steroidal anti rejection drug, I take the recrolimus eyedrops and it helps on the dry eye

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.

I'm taking it for Scleroderma and Dermatomyocitis

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

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.

Im on 1500mg twice a day :( been on it for 9 months now, currently stopped because I got shingles which is definitely worse than anything ever but dr says I will be getting back on it soon

I been on cell cept when i was 16 and im 30 now its sucks its so expensive if u dont ave any insurance thank god i have i always take it before going to sleep i take 1500

I am on cellcept for 4 months to treat my lungs problem side effects sleeping problems in the first month i notice also hogh blood pressure but in general it has less side effects than esteroid

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??!?

Ive been taking cellcept for 3 years for Myasthinia Gravis, along with steroids and IVIG.

Hello. I’m was just put on cellcept. I have GPA formally known as wegeners granulomatosis

Did the cellcept cause hairloss?

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 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.

Can we consume celcept 500 mg 3 times a day?? Please tell madam 🙏.

I'm looking at getting a transplant does Mycophenolate mofetil really change your life or can I live a somewhat normal life afterwards

I take 2 500mg in the morning and two more in afternoon for lung issues

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

I just beat T-cell lymphoma and got a bone marrow transplant. But was given to me because of my Fibrosis. I'm really nervous because of this.

I started today. For lupus. Scleroderma and miopaty.

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 have scleroderma and I’m on methotrexate injections once a week but they are talking about putting me on cellcept

Hello i have a orbital tumor 😔 so for some that don't knownwhat that is . I have tumor behind my eyeball they tried removing it but it was a fail .thank god it wasn't malignant. So I've been om methotrexate and that was not good for me so now im on mycophenolic acid its been 2 month and I'm not sure what to expect from this medication. Of tjeres anyone that can help me thank you

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

I was on mycophenolate for 4 years and suffered nausea all the way through, then had the best 4 years off it! For past 6 weeks I’ve had to restart due to a lupus flare and it’s the worst. My stomach is in so much pain and I’m constantly nauseous!

I was just put on it. But I got it for Pulmonary Fibrosis