Help with MG symptoms
 

Hi all,

I'm a newbe here, but I've been through the ringer with myasthenia gravis. I was initially diagnosed (misdiagnosed?) years ago with a different autoimmune disease, but my neuro thinks the meds from that diagnosis kept the MG at least partially in check.

After the MG diagnosis, I was taken off those meds and have had all sorts of MG problems since. They even decided to hospitalize me as I wasn't able to walk for a while. My neuro finally decided to put me on high dose steroids while I was in the hospital and things have gotten partially better, but I'm still not able to walk long distances and the double vision (while not as bad as before) is still annoying.

My question is concerning whether anyone uses a combination of IVIG and prednisone. When the doctor put me on the high dose prednisone, she said I wouldn't need the IVIG anymore (as it wasn't that effective to begin with). But since the symptoms don't seem to be responding as much as she seemed to indicate they would, I'm wondering if I should ask about using both concurrently. Has anyone found this more effective than either one alone?

I have reading material I really need to get through, and the double vision is really making it hard. I've been trying to do exercises to strengthen my eye muscles, but I have a feeling that the underlying disease is still causing the weakness.

Thanks in advance for any advice. I appreciate it.

BP

HI BP...glad you found the forum.

I have not been on pred or IVIG - but my understanding is that the common drug combo with pred is Cellcept. You take both drugs until the Cellcept really kicks in (about 6 months) and then wean off of the pred.

I wouldn't think there would be much benefit in concurrent use of pred and IVIG if you didn't respond well IVIG in the first place, but then I don't have first hand experience with either.

Some folks have had success with plasmapheresis when IVIG hasn't helped them. Has your neuro discussed pros and cons of various treatments with you?

I have been on Cellcept for about 11 years, IVIG for about 6 years and over the last 6 years I have been off and on prednisone, depending on whether I was on crisis or not.

I had no problems taking all 3 at one time (except for the regular prednisone side affects)

I am currently on weekly IVIG, 3,000 of Cellcept daily and 10mg of prednisone every other day.

Hope this helps.