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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OMG and osteoporosis

ranna
ranna

I've had double vision for approximately18 years and have been given prisms which help, except in the evening when my eyes are tired. I was disgnosed with a positive acetylchoine receptor binding test of 20 which I'm told is fairly high, in March of last year.  Have been taking Mestinon since that time.  I don't know what it's doing but it's not helping the double vision.  Maybe it will keep ptosis away.  I don't know.GP wants me to start on Prolia for osteoporosis, but I'm reluctant to do so.  I will ask my neuro, nice guy, but not too informed.  This is a small town.  Wondering if Fosamax is a better option since it is a weekly pill instead of Prolia which is a 6 mo. injection.  I can always stop the pill, but that injection scares me.  



Lenore1950
Lenore1950
Hi ladies thanks so much for your replys. I just got my Rx for pyridostigmine bromide 3 times a day. Will take my first one tomorrow morning. There is another rx that has to be approved that cost 1400.00 Holy moley!! The pharmacyst said it might make me tired at first and to eat when i take it every 8 hours. I am only awake for 16 hours a day. I guess it will be ok to take them at 10-5-12 should work out ok. Can anyone tell me if as this progresses if it has gone into your arms ,legs etc Trying to see whats coming so i prepare myself. In the meantime i wear a patch and will tell my grand-daughter ,grand-ma is a pirate. She can take me to show and tell :)
Nanosecond
Nanosecond
Lenore, definitely take the pyridostigmine bromide (Mestinon) with food.
Lenore1950
Lenore1950
took my first medication today....pyridostigmine bromide 60mg.3 times a day. The other medication is 1400.00 and i have to see if the insurance will cover it. How long does it take to see improvement? Do not know if i should be seeing a fast change or gradual over the weeks. So glad i found this group,its been a bit worrisome doing this alone with no one who understands..:)
Lenore1950
Lenore1950
oop sorry for the double post..
PeterL
PeterL
Hi Lenore1950

Not much to add other than all the best and good luck. However, I did note that you were advised to take the Mestinon every eight hours. Mestinon is fast acting: in the region of 30 minutes to an hour, but the effect will only last for around four hours... It isn't a medication as such and has no impact on the antibodies produced in having MG. It 'simply' impacts at the muscle junction to counteract the MG related issue of having damaged receptors and allowing more time for the muscles to work. You should see results very quickly but do remember that Mestinon is not a fix for MG and you may need further tests and medication, especially so if the disease is progressing beyond the eyes. This can happen rather quickly once it starts.