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...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Advice for someone who's other eye is going?

copperzincbear
copperzincbear
I've had a left eye ptosis for two months now, and it started getting bad three weeks ago. I think the other one is going now...or I may just be tired. My neuro-opthamologist put me on Mestinon 120mg 3x (though they said I could do it five times) but he wouldn't put me on Prednisone because my blood sugar was high (6.8 a1c, though it's only the second time they've said anything about it, and the last time was years ago). He said that he would not be the one maintaining me so he couldn't make arrangements to monitor my blood sugar with the steroid treatment either (he's a big figure at a university hospital so he only has office hours 8 hours/week). I got an appointment with the person to which he referred me in the neurology department but that is in the beginning of October. I've also got an appointment at the MG clinic at another university hospital so all is not lost.

I've also only been taking 60mg Mestinon since yesterday to see if I tolerate it, and it appears I do - not even much in the way of gastrointenstinal problems - even though I don't think it did anything for me. I guess I'll just try 120mg like he prescribed. I guess I'm wondering about others' experiences taking this - does it take a while to start working? Is it OK to start off that high?
mermaid3
mermaid3
120mg to start sounds high to me. I started on 30mg, saw just a litttle improvement...two weeks later was upped to 60mg three times a day. Eventuallyy increased to four times a day. When my neuro upped me to 90 mg. I actually got weaker- neuro says mestinon can cause this and to listen to my body and go back to 60mg.

My suggestion give 60mg at least a few days- a week. then increase to 90mg. if needed.You also might find it helps to go ahead and take the 60 mg atleast 4 times a day as it only lasts 3-4 hours in your system(body). If after 2-3 weeks then go to 120mg if need.

this is just my suggestion... this is that snowflake disease that affects us all differently.. so what works for some not work for all. See what others suggest, too.
bweeds
bweeds
Take a look in the Links group at myasthenia and medications. It explains how the Mestinon is handled by the people who participated in the studies. Most of us seem to do better with a pretty constant blood level. That usually means every three to four hours.

I would suggest working the dose up gradually and taking it more often. It is nice to have some leeway in the dosage and timing and I am glad your doc gave it to you. b.
becwithkids
becwithkids
I get ptosis on both sides. Mine also started on the left and usually is on the left, but sometimes the right and sometimes both. With treatments. Mestinon helps most of the time, but treatments have helped much more (prednisone and IVIG).
For me, frequent eyelid dropping is a sign that it is time for treatment. It is not usually the only sign for me though. I will also have my voice go out, or my eyes will get blurry... etc.

When I started 120mg I asked this same question. I was very nervous about taking too much. I made sure I increased at a time when my husband would be here to take over if needed. I did better on 120mg.
Now I adjust my mestinon dose according to my activity level, my symptoms and where I am with my IVIG (i usually need 120mg the week before). I usually take 90mg every four hours.

Best of luck to you,
Becca
larissam
larissam
I take 60mg 3 X a day plus 180mg of Timespan before bed. This has served me well until this past week. Right eye ptosis is back although not as severe as it was in the beginning (six moths ago). Increased right arm weakness and my tongue feels as though it's doubled in size. I have increased my dosage by 30mg the last 3 days but so far no noticable improvement.

I hope you find relief soon.
Larissa