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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cannwynn 03/02/2015

Hello

I was diagnosed with ocular myasthenia in 1993. It has never generalized. I have Thyroid disease also (Graves diseasse). Off and on for the last 3 years, I have been bothered with the double vision. and been getting treated with IV Solumedrol which seems to work for about a month then it creeps back to double. Does any one who has ocular myasthenia ever go into remission? What medicine/treatement are you on? Any advice, opinions are welcome. Thank you,

stevebert 03/03/2015

Hi, I have had ocular MG since 1977, when I was 24. It stayed Ocular until 2013, then went general on me.

I am sure you take Mestinon? I have had long periods of great remission, but when it got extremely bad in 1993, then again in 2014, I went on prednisone and that worked extremely well in reversing the ocular MG. Have you tried prednisone?

Steve

snowbeltfolkie 03/03/2015

Prednisone 10mg daily, kept my ocular myasthenia at bay for several years, until the MG became more generalised.
Many people here, do seem to have good luck against ocular problems - with combinations of Prednisone and Mestinon.

Do you receive any therapy for the Graves disease?
(Autoimmune problems - do like to run in a pack.)

I've never tried Solumedrol as regular therapy, can't help you there.
It's prednisolone, methylprednisolone?

stevebert 03/04/2015

snowbeltfolkie, did the 10mg prednisone also eventually help with your general MG? I started 10mg about 3 weeks ago and still waiting for some improvement. The eyes are working very good, though, no double vision.

Are you still on 10mg?

txkiki53 03/05/2015

I have generalized but started with eyes. My eyes are always bad .. Worse at the end of the day. I am down to 10 predinsone 5 years ago started on 60 .

Good luck
Annette

snowbeltfolkie 03/05/2015

@ stevebert.
Hi - since 1977! Wow - good job.
No, the 10mg was not enough to handle more my generalized MG. But - that's just me.
I'm thinking? If 10mg Prednisone was going to work for you? You would be noticing that, after 3 weeks.
Check in with your Neuro. Maybe they think 10mg will kick in for you. Or maybe 20mg or 25mg might work for you? And then you could taper down.
How much Mestinon do you take? Could that be adjusted?
I could never take Mestinon, couldn't tolerate it. Oh well (jealous).

I was like txkiki53, had to go up to 60 mg Prednisone, along with weekly IVIG and other treatments. But that's okay, it's what we needed. It was not fun. But - everybody's history with MG is different.
I hope you can stay on the lower end of dosages, you have been doing so well, that's a very encouraging thing.
But don't hesitate to try a different regime, if your Neuro recommends. Steps up, steps down.
Keep us posted! - Ross
ps: sorry cannwynn, we are hijacking your post a little. Thanks for allowing us to keep each other informed.

cannwynn 03/07/2015

Thanks for all the reply's and support. IV Solumedrol is basically prednisone which seems to work better for me than oral prednisone. I do not take Mestinon as I cannot tolerate it. I just saw my neuro last week and she prescribed IV Solumderol again for my double vision. I see my neuro ophthalmologist next week for the TED. Right now, it seems that my neuro believes the double vision is more from TED than the ocular. Still do not have generalized MG. Thank God. I'm so sick of this I don't know what to do. I'll keep researching and praying for the best.

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