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Myfortic vs Cellcept or Mycophenolate? Share your experience
Autoimmune Diseases | Last Active: May 5 6:00pm | Replies (33)Comment receiving replies
My Dr is not sure what disease I have, He has said "Maybe" it's Organizing pneumonia with a connetctive tissue disease. He has been pushng me to go on the Cellcept in order to reduce the amount of prednisone I am taking. My symptons since Aug 2025 are: started with a wheeze when I recline, it proceeded to get worse and had pain in my left lung with shortness of breathe , had a strain of pneumonia and humophalous influenza , went on 3 antibiotics and eliminated the 2 bugs. chest pain and breathing got worse, had a broncoscopy and blood work. Everything came out negative except dd strand dna (it was 12). Finally started 40 mg pred in Feb 2026 for 2 weeks then went to 30 mg for 54 days now on 25 mg for 2 weeks so far. My last Ctscan showed some improvement of inflammation. and I know I am getting better because I have no pain in my lung, my endurance and breathing are better. I still have a bad wheeze and dry cough. I did catch something and now on doxycyolone for 10 days. I am now on Albuterol 2 times a day 2 puffs. That helps a lot.
My Dr is concerned about the weakening of my immune symptons being on Prednisone so long , as I am, but the Cellcept scares me more. Again my questioin is, should I try the cellcept or continue with tappering on the prednisone? As the Dr is unsure of what I have, I am reluctant to change the course.
Replies to "My Dr is not sure what disease I have, He has said "Maybe" it's Organizing pneumonia..."
@leslyb I really agree with @altabiznet and recommend having a 2nd opinion with a different doctor from a different practice.
Can I ask, what is it with cellcept that scares you?
@leslyb
I have an 2nd opinion scheduled in mid June. I have been waiting 4 months to get in with someone. In the meantime My current pulmonologist is recommending cellcept.
My concern is , why change what's working, even though I do not have a firm diagnosis. Also I read side effects on cellcelpt that seem worse than prednisone. Am I correct?
I am having another CTS end of week and itf the inflammation is showing improvements I will push to tapper the pred to 20mg .
How many weeks for tappering seems to work? 2, 3 or 4? for not having a relapse of whatever I have, and getting off the prednisone.
@leslyb I agree with a second opinion - but I definitely suggest getting off the prednisone as soon as possible and finding and alternative. From being on steroids for too long, I needed cataract surgery … developed adrenal insufficiency … and now have severe steroid myopathy. It’s a catch 22 situation as I need to get off steroids in order to resolve the myopathy, but I can’t now because my adrenal glands don’t work anymore so I’m steroid dependent. I’m in a walker and working towards being recertified to drive which has probably been the worst part of all of this - being told I can’t drive as my legs are too weak. I spent 18 days in the hospital at Thanksgiving with myopathy and dysphagia, so while steroids make you feel better, they come with a significant downside. They are like black magic. My two cents to why a change is needed sooner rather than later.
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@leslyb
It is hard to answer your question without knowing your diagnosis. However, Cellcept, which is immunosuppressive drug, is usually better tolerated and safer long-term. Prednisone, when given long-term may cause serious issues, like osteoporosis, high blood pressure and poor healing. Doctors are trying not to keep patients on prednisone for too long.
The Patients usually stay on Cellcept for years at the dose up to 1500 mg per day. Those who develop GI toxicity (diarrhea, acid reflux), are switched to Myfortic, a similar drug, which is better tolerated. Both are prescribed to prevent organ rejection post-transplant, and in autoimmune diseases, like involving skin and lung: scleroderma, Sjogren's.
You may want to get a second opinion regarding stopping prednisone. If you see good response to prednisone and do not want to stop it before you get better, talk to your doctor as well - for how much longer can you stay on prednisone?
However, if your condition requires long-term immunosuppressive therapy, a switch to Cellcept or Myfortic may be indicated anyway. Best to talk to your doctor.