Quote:
Originally Posted by Denise9293
My neurologist was at a loss but decided to try Mestinon. Symptoms have improved some but I now have twitchy eyes and muscle cramps from the med. I was told that 5% of MG patients test normal.
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Denise,
Mestinon is a tricky ting. It works differently from individual to individual.
Here is the MG Manual section on Mestinon:
No fixed dosage schedule suits all patients. The need for cholinesterase inhibitors varies from day to day and during the same day. Different muscles respond differently—with any dose, some muscles get stronger, others do not change and still others become weaker. [emphasis added] The drug schedule should be titrated to produce an optimal response in muscles causing the greatest disability. . . Attempts to eliminate all weakness by increasing the dose or shortening the interval may cause overdose at the time of peak effect.
Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 17
I downloaded and printed a copy of the MG Manual for my first neurologists. I'm seeing my new neurologist tomorrow, and he appears sharp enough not to need the manual.
Check with your prescribing neurologist, but I can tolerate 3 or 4, 60 mg Pyridostigmine (generic mestinon) tablets a day during my waking hours, one every 4 hours. Also ask your neurologist if the 180 Mestinon Timespan might be beneficial for bedtime. This is taken in addition to the normal dose. The Mestinon timespan should not be taken during the day.
While in the hospital for a recent MG Crises, they gave me a 60 mg tablet, every 4 hours around the clock for 6 days, unless I am mistaken. To be sure, I will check with my neurologist.
I only take Mestinon when I have symptoms. During my recent taper, the Stanford people had me eliminate the Mestinon. I did not need it, only having relatively mild symptoms.
I've seen three different neurologists, all trusted me to choose when and how much Mestinon to take, with in reason. Three days prior to my MG crises, already displaying severe ptosis, Dr. Dearlove at Stanford essentially said take as much Mestinon as I want to get through the return of symptoms. I took this to mean one tablet every 4 hours during my waking time, 4 to 5 tablets a day.
-Mark-