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...
I see so many of you discuss Mestinon. What class of med is it? Does it have a lot of side effects? Is it prescribed freely or is it more of a last resort type of med?
http://en.wikipedia.org/wiki/Pyridostigmine
It is usually one of the first meds tried for MG. This article explains well how it is prescribed and how it works well for some people with MG but not as well for others and not at all for some and also explains other treatments including ones that are newer.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083988/
For some people it is the main part of their therapy and so far that is true for me. I have an extremely positive response. It is my understanding that people with more complicated MG need more types of therapy and differing ones depending on antibody types.
I am seronegative. For some that means a weaker type of antibody but my neurologist thinks I have antibodies that have not been studied as yet. Unfortunately there is not as much research going on as there needs to be.
I was told people with musk antibodies usually do not have a very positive response to Pyridostigmine. The medicine can be helpful to many but many people need other treatments.
As far as side effects for me the main one is increased spit and increased GI activity. That has been a positive as I had SICCA syndrome and very dry mouth. My dental hygienist is very happy with this side effect as am I as I don't have cotton mouth all the time and that promotes better tooth health. Also my GI tract was slowing down and this has countered it. Some people get increased cramps in legs and such. Others here have had other side effects or more severe ones that has prevented their staying on it so I hope they chime in..
I find I really have to vary my mestinon by actiivity and other meds taken. I use the 180mg. ER BID in the background and titrate the shorter acting 60 mg in the foreground. It works well for me when I get it right. Antibiotics and pain meds can compete for the acetylcholine and I have had to raise it quite a bit when hospitalized and on both types of drugs. I also have to raise it with increased activity. I can hardly walk across the room without it and had been on 24 hour oxygen before getting on it. Now I don't need oxygen day time or night time.
I have learned to recognize impending low pyridostigmine by my bodies reaction either to breathing or arm weakness or difficulty walking and increase it immediately when needed. My goal is to have in place an amt. that works for the situation. Having had four hospitilizations in the past 8 months I now have a pretty good idea what that takes in dosage. Living remotely I also know what a 4 hour drive requires to keep up arm strength. It has been a real learning process for me but I am lucky that so far this has worked well. I know many here have more complicated needs and some due to antibodies they have find this one doesn't work at all for them.
Hope this helps....Marie.
I will add this to our Link's Group under the discussion "Mestinon." The second article is also a good overview of treatment options for the diagnosed. Sometimes there are studies of new drugs for which we can volunteer.
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