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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Newly Diagnosed MG patient

lbarnesf
lbarnesf

Since I am newly diagnosed I am trying to determine whether to go with the CellCept or Imuran treatment.  Anyone have any suggestions on their experiences with the pros and cons of these treatments?

Speechie
Speechie
I was first placed on Imuran. It tore my stomach up. I threw up every day...several times a day. Doc switched me to cellcept and the stomach issues went away. Other than differences in side effects I’ve been told they do about the same thing. Cellcept is newer and I think it costs more. I know others who have had no issues with imuran. Both drugs were originally to prevent organ transplant rejection by suppression of the immune system. Many persons with autoimmune diseases take one or the other drug.
Speechie
Speechie
Oh I forgot you also have to have blood work at doctor recommended intervals for either drug.
Nanosecond
Nanosecond
My experience is the opposite of Speechie's. I was initially on generic Cellcept and did fine with it until at 8 months I developed nasty diarrhea and had to go off it. I have now been on generic Imuran for 14 months with no problems at all. Unfortunately I am still symptomatic, but since my neuro says Imuran can take 1.5 - 2 years to improve MG symptoms, I am being patient. At 8 months on the Cellcept, my MG symptoms were also still there, so I may just be refractory. I am seronegative.

I prefer taking Imuran to Cellcept -- the tablets are much smaller (I have swallowing problems), Imuran is much less expensive, and the timing of my two daily doses isn't as restrictive as it had been with the Cellcept.

On Cellcept I had to have my kidney enzymes monitored; on Imuran my liver enzymes are being monitored.

- Nan
annkemp
annkemp
I am on cellcept and I have never had single problem.
lbarnesf
lbarnesf
Thank you to those who replied, I appreciate it. I would also appreciate anyone else who can share their experience.
Rhanson
Rhanson
The biggest problem with either of the two is that they seem to take a long time to work and after taking 6 months or more or they may not work at all for some folks.

To get through the time before they start working, we can take IVIG (extremely expensive and insurance may balk), Mestinon -- helps with symptoms but lets MG progress, or prednisone -- relative fast acting with bothersome side effects, especially long term.

Many of us get started with Mestinon and prednisone along with either Imuran or Cellcept to try to cover immediate problems and then let the Cellcept or Imuran work.

None of these are without side effects, both short and long term, but with MG we need to take something to keep up functioning

Good Luck
Russ