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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Personal Update- Started Steroids 1st Time

strizzlow20
strizzlow20
So I started steroids for the first time about 3 weeks ago or so. I'm only at 10mg per day and the mestinon is 60 mgs twice a day. I have not seen an improvment in my normal MG symptoms (mainly speech issues) and it hasn't done a thing for my vision. My doc thinks I have weakened eye muscles that are causing both of my eyes to subtly move around and therefore cause the wavy effect I am having. I haven't been so sure if this is MG because images,text, and objects look like they move around when I have a steady gaze. I have mild eye lid drooping in both eyes. I just recently started having neck weakness, even in the morning when I raise my head up I can feel the muslces are weak in the back of my neck. I have to hold my head up with my hand when I am working at the computer because of the pain I am getting by the end of the day. My lower legs are also shaky when I strain them. I also feel off balance now. Craziness! I am asking for a tensilon test in a couple of weeks in my follow up to see if the ocular symptoms are relieved or not. My eyes, btw, are perfectly healthy with the exception of eye lid weakness according to three different eye docs. This means it's a brain or muscle problem, or both. I just turned 27 3 days ago and I feel like I am 60. If this is the MG, it looks like I was lucky to not have a relapse for almost 4 years. I feel I have been on a steady decline since the end of April.
deleted_user
deleted_user
That is very little Mestinon and very little steroid. Also, demand the ice test. Way less dangerous. I am terse because of double vision. :)
arniebb2
arniebb2
Agree Elinor...seems doses are too small ... maybe check again with Doc strizzlow?
annkemp
annkemp
I was taking up to 90 of mestinon every 4 hours. and 60 of prednisone in the beginning.
newmugg
newmugg
You need to let your neuro know ASAP you are having neck weakness. Neck weakness can turn into swallowing issues and breathing issues. It's nothing to play around with.

-sherry
Bamboolilly
Bamboolilly
I ditto all above. Had the neck weakness which led to swallowing weakness, etc..
Be well,
ShanAlis
ShanAlis
I also refused to go on high doses of prednisone, and your story sounds a lot like the beginning of mine. If you want to stay on a very low dose of prednisone you will have to be patient with the disease. It will take likely double the time to get the disease under control that higher doses of prednisone would offer you.

Good luck.
copperzincbear
copperzincbear
Are you sure that you were not supposed to check back with your doctor and tell them how you were doing after a certain number of days at a certain dose? Normally when they are trying to figure out how much prednisone to give me, they have me check back at certain intervals - ten to fourteen days if they are raising my dosage, three weeks if they are tapering me down. Because 10mg is such a small dose, I'm wondering if they weren't tapering you up and if you were'n't supposed to call them after a week or so and tell them how you were doing.

When I have ocular symptoms, usually one of my eyes is "wobbly" with respect to the other: it will lag behind the other in movement and sort of "skid" a little to a stop if I move my gaze somewhere and stop, as if they don't stop immediately. I find that when I walk with the "wobbly" eye open, it is harder to balance when I walk. This may have something to do with your balance if it's not your leg muscles.
deleted_user
deleted_user
Do you feel better 40 minutes to a few hours after the mesitinon? Normally that happens. However as everyone else said, that is not much mestinon nor prednisone.
Prednisone should be started slowly so you don't have an exacerbation early on just from the prednisone. If you do OK, then you probably will have it increased.
Mestinon is hard to take without digestive distress. I ate something with the larger doses and also took Imodium and that helped a lot. However, I did need 60 mg about every 2 hours for times I wanted to function best. I eased off at night and when I didn't need to be active.
Good Luck