Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Muscles & Bones
/ Myasthenia Gravis Support Group

CellCept

tediii
tediii
Has anyone had good results from CellCept, how long did it take, and how are defining success?
mermaid3
mermaid3
I have been on cellcept for three yrs. After one and a half yrs. I was able to stop taking mestinon and prednisone!!!!. It started working in about 3mos and really noticed a difference by 6 months.

I have generalized MG, weakness mostly in my arms , legs and jaw muscles. I can now walk longer distances, go up and down more flights of stairs, actually scrub down my tub/bathroom. In general do more housework than use to. I can eat/chew almost normal, don't jumble my words as much, tho singing is still out.

I still have to pace myself, there is a limit I reach. At that time my muscles get sore (warning) and soon will not work. That limit continues to gradually grow, though I feel I might be reaching a peak soon.

I am faithful with my sunscreen ( also hat, wear more clothing etc) as cellcept greatly increases the risk of skin cancer. I definitely recommend its use, under doc care and I do know not all people can tolerate it. I have had no bad side effects.

I have bad allergies and still take allergy shots while on cellcept, this works for me. Also if I do get a rough infection,i.e. bad cold, virus, I cut my dose (of 1500mg/day) down to 1000mg or 500mg depending on severity of infection. So my immune system cant off the bug.
Hope this helps!
annkemp
annkemp
From my point of view it took about 1 year to get results I needed.
I am on prednisone too.

Doing great.
mermaid3
mermaid3
My last sentence should be .... So my immune system can fight off the bug!! ooops!
Steve0716
Steve0716
Cellcept helps many of my autoimmune issues. It took about 6 months before I felt the effects of it, and I defined the good effects as being more energy, less noticing of my problems in my daily life, and no real side effects other than lowered immune system.

It wasn't enough to help with my breathing when it became very shallow and we had to start additional IVIG therapy. But I also developed ITP and CIDP [autoimmune diseases] and IVIG is the first line of defense for those.

I still take cellcept [2000mg daily] and would not want to give it up since it does take care of so many of my other problems. I have to be careful of infections [I have had several] because my white blood count drops in the 1's and 2's at times.

Hope it works for you. Managing MG seems to be a constant balance of science and art to get it right.