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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cassynchris 10/27/2013

I have been wanting to get off prednisone for awhile now. When I start to come down from 22 1/2 to 20 I start getting weak but I haven't had a IVIG treatment for awhile now. The last time I had a IVIG treatment my blood pressure went up but I would love to get off prednisone and do the treatment. I have to see my doctor tomorrow and I can't just stay on prednisone for ever. Just don't know what to do!!

annkemp 10/28/2013

What about cellcept? That helped me.

cassynchris 10/28/2013

I take Imuran also

ShanAlis 10/28/2013

I prefer IVIG. I feel as though prednisone on the highest dose im willing to go on doesn't provide relief of symptoms for me whereas IVIG for me at least provides full relief of symptoms.

vieve 10/28/2013

I don't think of IVIG as being interchangable with Imuran and Prednisone because they don't affect the immune system in the same way; ivig is a more temporary way to fix the symptoms, rather than a long-term solution to the problem itself. You're right, though, you can't stay on Prednisone forever so if it's a matter of waiting for the Imuran to kick in, or just finding another solution that doesn't have all the bad side effects of Prednisone, ivig might be good for you. Ivig can have risks or bad side effects for some people too (as you learned during your last treatment), but since everyone is affected so differently by this disease and it's treatments, if something isn't working for you hopefully your doctor can hep you come up with something else.

I have been having ivig and taking Prednisone for the past year (or more) and am now reducing my amounts of both; the high dose of Prednisone seemed to work really well, finally, to suppress my immune system. I'm doing well now on 10mg every other day; I was on a high dose at the beginning of the year. And ivig works really well to eradicate my symptoms but of course it wears off after a few weeks and doesn't have a cumulative effect (except in the case that it might make you strong enough, temporarily, to exercise a little and get into shape). When I was at my weakest last year I definitely could not have done it without the ivig.

I hope something works out for you!

txkiki53 10/28/2013

So can relate every x I get to 20 I have more symptoms. Ugg been on predisone 3 years
Good luck
Annette

cassynchris 10/28/2013

I have been on the Imuran for 3 years now at 100 MG a day. I went to see my Doctor today and she wants me to come down 1 MG very 3 to 4 day. If I start to become weak to call her and will state the IVIG treatments again. I just want to get off the prednisone.

deleted_user 10/28/2013

Equivalent of 70 mg prednisone a day for nearly a year. Still no relief. I would sell my first born for IVIG, but he's already all growed up.

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