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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Prednisone resistant MG

angepugin
angepugin
Hi All

I've been reading a lot about prednisone here. Side effects and benefits. I know that in most cases prednisone is very effective in treating MG and can even effect remission in some cases. I however have severe refractory disease that is quite unresponsive to all treatments with the exception of IVIG which I can no longer use and PLEX which I am now relying on together with my pred, imuran and methotrexate. It would be interesting for me to see if there is anyone else out there who has also proved completely unresponsive to prednisone even at extremely high doses?

Thanks
Ange
deleted_user
deleted_user
Wow, Ange, I sure haven't but I'm so sorry for the suffering you must be going through. I don't know that prednisone can actually effect remission or if it just reduces the symptoms to a tolerable level, which it did for me.

When you say "high dose," how high are you talking?

PLEX and IVIG are really funny, too, in that they can stop being effective. For me, after 115 rounds of PLEX, it stopped working, so I started IVIG and it worked like a charm.
angepugin
angepugin
Hi Curt. When I say high I have actually been up to 100mg for an extended period. I only weigh 55kg so that's a whopping dose. I know what you mean about the treatments becoming less effective. The IVIG started off great but I then started becoming severely neutropenic after each dose and ended up so immune compromised that I contracted TB. I also had a few doses that never worked at all so eventually we switched to PLEX. I have had countless exchanges over the past 4 years and I must say I am seeming to need them more and more frequently. Can't really think why that would be. They also make me really sick before they make me better I guess because my whole system is under strain and it's quite an invasive procedure. Perhaps I should think of trying a swop back to IVIG to see what happens after a 4 year break?

Glad you have found relief with the prednisone!

Strength!
Ange
angepugin
angepugin
O I forgot to mention that the massive doses actually made me develop a steroid myopathy which they found on muscle biopsy and which obviously contributes to my weakness and irreversibility. At the moment I am on 25mg. I have actually recently considered discussing trying high dose again with my neuro especially after reading about everyone elses responses to pred but now just remembered about the myopathy so it's probably not wise.

Ange
deleted_user
deleted_user
Hi Ange,

I have been on prednisone, imuran, and mestinon. Mestinon doesnt work to relive my most severe issues: blurred vision and swallowing issues, but it does get me out of my "weakness." The highest dose I have been on of prednisone is 60mg every day. I have since dropped to 20mg every day. I have found with high does of prednisone ALL of my symptoms go away. Currently I am tappering off and wil start taking 15 Mg every other day and i start IVIG in two weeks.

I have noticed that the lower I take prednisone doses I begin to see the symptoms of MG return. Imuran seems to be having no affect for me in the treatment.

I have heard IVIG works for a while, so I am hoping that this will be my remission period until I find something new.

Good Luck.....TT