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...
In reading all these posts for the past 4 or 5 months it appears that everyone takes just plain 60 mg. Mestinon and not the Mestinon Timespan. I was put on Mestinon Timespan in l952 and did really well with no problems related to the drug. The timespan is 180 mg. released slowly over a 3 or 4 hour period of time. I do so much better on it with my drooping eyelid and double vision than I do with the 60 mg. of plain Mestinon. If I take 2 or 3 tablets of the 60 mg. it is released into my blood stream quickly and causes more problems than when I take the 180 mg. of timespan and it is released slowly.
My problem is the cost. Plain ole Mestinon is cheap compared to the timespan. 100 tablets of the Mestinon Timespan is over $500.00!!!!!! I have been on medicare for almost a year and the 60 mg. is covered but still costs me $28.00 for 100 tablets but the timespan is not covered by my Humana drug plan. Can anyone tell me if there is a mail order place or somewhere these drugs can be bought cheaper or a different drug plan that might cover the cost?? Thanks.
My problem is the cost. Plain ole Mestinon is cheap compared to the timespan. 100 tablets of the Mestinon Timespan is over $500.00!!!!!! I have been on medicare for almost a year and the 60 mg. is covered but still costs me $28.00 for 100 tablets but the timespan is not covered by my Humana drug plan. Can anyone tell me if there is a mail order place or somewhere these drugs can be bought cheaper or a different drug plan that might cover the cost?? Thanks.
I have done just about everything with mestinon. For some reason though, I have never taken 120Mg at once. Realistically, I have had more than that in my system at once because I was taking timespan and using mestinon as a chaser..just to avoid prednisone and to deal with symptoms until cellcept kicked in.
Based on what you are saying, I would try to lower the amount you are taking or take the 90mg every five or six hours to see if that helps you out. OR...Maybe space it out. Start with a 30mg and after two hrs take the 60mg or 30mg. Just play with the dosages and times etc. Figure out what works for you. Originally I had set timea and carried a sheet with me.Too much could make you weaker, and thus be less effective...However, another and certainly possible scenario is that the mestinon is becoming less effective and if that is the case it is possible you need treatment or an increase in treatment.
Pay attention to your symptoms over a period of time and look for a consistency one way or the other. Hopefully you are in close contact with your neuro. I am unsure of what treatment(s) you have done or are on also, so...
My Doctors are...Dr. Meriggioli (UIC - moving to Boston) as my main Neurologist and Dr. Giulianotti as my surgeon....you are welcome to check them out....I kinda fell into them in a long drawn out story....but glad to have them on my side!!!!
Thanks for sharing your treatment plan and care with the group. It is good to hear what is going on out there with us. It is important to know what we can face. Keep us all posted. You can count on me and the rest here for support...always
TJ
I agree it is too expensive if you have to pay for it-my problem is with the neouro
I can't seem to get information on myasthenia gravis-I don't feel any different if I take it or I don't-I just got a new neouro and first thing she said she was changing me from timespan to 60 twice daily and then once daily then none and put me on low dose prednisone-I tried it but got horrible leg cramps so I went back to time span she agreed that was alright-I tried prednisone but it wiped out my memory so she said cut the five mg in half-I did same thing happened I had a bad experience with prednisone before; on 10 mg twice daily third day blood pressure was 190 I reported that to my doc, and she said don't do that it is stroke level and just cut dose in half-cut to 5mm once a day
I had no problem with that-changed docs .which said she would ween me off on the first visit she didn't so I just quit taking it the after a couple of visits they
don't take Medicaid any more so I had to change again-I wish I could find a neouro that new something about this disease and could help me with my questions without guess work but medical terms-the doctors here ha moved north to bigger cities leaving us with nurses that call themselves doctors; they give prescriptions without researching the medications they prescribe and in the last two months they have prescribed meds thst I am not supposed t take.(I always ask the pharmas if this drug is alright for me)
Peter
Best wishes TJ
all our good doctors have gone to Tacoma and are replaced with nurse practitioners which in my opinion cannot diagnose or fix anything. my first replacement I would study this myasthenia gravis and try to talk to her about what I found out but she was a know it all and told me to stay off the internet and that she had a different internet- when I would ask a question she would open up her laptop and read the very same thing that I had read on my internet-she didn't seem to knowledgeable about this disease-I have studied myasthenia gravis a lot but have so far not found a cure but still looking-there may be a cure but big pharma is not about to show us because of the money they make on their expensive drugs so it's up to us to find it.
Hope you get things sorted.
Peter