Opinion/Advice for cellcept, etc..
 

Hey everyone, new here I have a few questions and would like to know your opinion. My mom was diagnosed with MG she's 65 y/o and had a thymectomy (after a tumor was found) last aug, her symptoms then were pretty much just ocular MG and shortness of breath. After a few weeks post op she started having symptoms like that of allergic rhinitis which persisted up to this day, the way she describes it as having mucus stuck up her palate and couldn't cough out. Xray and other tests were done to rule out any possible cause and the result came out clear. The doctor said the post nasal drip was because of mestinon, had any of you experienced that?

Last week because of shortness of breath and that her slurred speech started she was again given IVIG.
Now her eyelids still droops, post nasal drip is still present, and feeling weakness on her left leg every morning. Apart from those she is still quite active. She walks around independently without any assistive device, even cooks and does other light household chores. She is taking mestinon (30mg), prednisone and now is prescribed with cellcept 2000mg a day which she is hesitant to take because of the serious side effects (adding to her alarm is her sensitivity to meds and the high dosage). We are stumped as to what to do after reading the insert of cellcept. :confused:

welcome
 

Hi
I am so sorry your Mom and family are having to go through this. I am 57 and was diagnosed in May. I have been on Cellcept just over a month. So far I have had about a 50% improvement in my symptoms and am very happy I decided to take it.

My symptoms are mostly ocular(double vision & ptosis) but I do have neck, arm and leg weakness. I have also had swallowing and breathing issues too. My doctor started me on prednisone but severe osteoporosis has made it imperative I go on another medication.

I also was concerned about the list of side effect and adverse reactions. But, I have had to change so much in my life I decided it was worth a try to get in remission.

So far I have had some minor stomach upset and some pretty significant sweating with activity. My liver and kidneys are being monitored monthly with blood tests.

Good Luck with the decision about Cellcept. I did lots of reading online and other patient forums. So far, I am glad I decided to take it
Sandy;)

I went so far the opposite route, after reading about it and the side effects, i have decided to shelf it for now. I am going to see if my doc can get me some 3 4 dap and go from there..