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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bear57 06/27/2012

I have been on Mestinon and Prednizone since February of this year after about a month or two I felt pretty good with no double vision. Now it is almost July and my neck is sore moving side to side and my head feels heavey, my eyelid is drooping I feel weak to sum it I don't feel at my best. My Doctor has raised and lowered my medicine several times right now I am taking 90mg of Mestinon 3 times a day and Prednizone 10mg once a day. Has anyone experienced this or something simular? Thanks

deleted_user 06/27/2012

I wonder if the medication is contolling your MG at this point. Heavy head and drooping eyelid sure sound like MG symptoms. Have you talked to your neuro about symptoms coming back? Maybe he could adjust your doses or schedule. The Mestinon dose is spaced pretty far apart considering the effect only lasts around four hours.

I'm new to MG myself, but I think the first year or two it can be unpredictable. Maybe more experienced group members can offer more info.

Take care,
Rhonda

momsotired 06/27/2012

I agree with Rhonda! Definitely get into see your neuro asap! Those definitely sound like MG symptoms and better to try to control the symptoms before they get worse. Do you feel stronger a little while after the mestinon? Hopefully you can just adjust how you are taking it. You may need to go up on the prednisone but hopefully it will just be playing with your dosing!
Feel stronger fast!
Nicole

mermaid3 06/27/2012

Yep talk with neuro.... sounds like you might need to increase the prednisone 10mg is quite low. I started on 10mg (mestinon 60 mg 4xs day) got some relief then upped to 15mg after two weeks and three weeks later upped to 25mg which worked great. My neuro suggested i take 90mgs of mestinon instead of the 60...this dose actually made me weaker, which she says can happen and to listen to my body and go back to 60mg.

So you made need more prednisone and/or decrease the mestinon to 60mg and possibly take it four times a day instead of three...discuss with your doc.

P.S. I have weaned back to 12.5 mg of prednisone and doing pretty good (when not getting lidocaine haha).

bear57 06/27/2012

That is what I thought the MG is still there. I will call him tomorrow I am trying to get an appointment with another Doctor that has more experience those guys are hard to see may take 3 or 4 months. Thank you all for the advice.

txkiki53 06/27/2012

it sounds to me if you need a higher dose of predisone, mine was just rasied back up to 60 from 20 due to all the issues. I am glad you are calling your doctor and trying to get into a more experienced doctor with mg.
please let us know how you are doing.
annette

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