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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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I was diagnosed for MG by blood tests after double vision, tunnel vision, tiredness etc started while being treated for Ptosis. Had cataract surgery because it was needed and should be done before eyelid surgery. Also waiting for MG to settle before getting new glasses post cataract. will probably need minor long range and a little more short range help with glasses but cant be sure until MG effect on eyes stabilize. Waiting for Chest Ct, and nerve conduction tests to be scheduled as well as a sleep apnea tests(not sure why the sleep apnea).
Neurologists started me on 60 mg Mestinon 2x a day (actually Pyridostigmine because I asked for the generic) I have been taking that for 2 days. 20 Prednisone 4x a day for 2 weeks, then 3x for 2 weeks, then 2x. I started that with a 80mg dose early this morning. I read somewhere that pred dosages were calculated by weight and I weigh in at 220 so that may not be as high as it seems. Also my symptoms primarily involve the eyes. I have tiredness etc, but no breathing issues and I did ok on the Neurologists strength test. I believe that if I had breathing issues he would have started low and ramped up instead of the reverse. Day 1 made very little difference, but day 2 showed some improvement. Today had been a pretty good day. Just a couple of bouts of double vision and some stronger instances of Ptosis when I drove around some. The Ptosis has been minimal for about a week but I had almost stopped driving altogether. Only side effect so far has been a little diarrhea. Now for the questions. Is there a problem with using the generic for pred. My insurance calls it a non preferred generic. Just a hypothetical question as pred costs about $250 a month more then the generic and that could double if the dosage needs to be increased to what some of you are taking. I thought the Mestinon would work quicker like the first time I used it but be temporary. Does it some times take a day or 2 to build up? I thought the pred would take awhile. Does it sometimes start working right away? What should I expect now for side effects for the pred? What are the odds that the MG treatment will not correct the Ptosis and that I will still need eyelid surgery? How long should I wait for MG symptoms to stabilize before going back for new eye glasses? Can anyone share their experiences on this? |
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