Hi Abby,
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Originally Posted by Stellatum
Hi, Mark, and welcome. I have just a few comments.
Pyridostigmine is the generic name for Mestinon. So you are taking quick-acting Mestinon, plus time-release Mestinon. I wasn't sure if that was clear to you. Pay attention to when your symptoms are worse. The quick-acting kind of Mestinon only lasts three to six hours for most people. You might get some results by changing the dosing schedule of your two kinds of Mestinon (with the doctor's OK, of course).
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Remembering that I work the grave yard shift, sleeping from 6:00 or 7 a.m. to 3:00 p.m., here is my current MG drug schedule:
1. Mestinon Timespan at 4:00 a.m. and 4:00 p.m.
2. Pyridostigime at noon, 8:00 p.m. and midnight.
3. Prednisone at 4:00 a.m., noon, and 8:00 p.m.
I usually awake around noon to use the facility, but set an alarm. I always feel stronger and better after sleeping. I wonder if I should consider skipping the noon Prydostigime and take the daily three in a more compressed time period during my working night. I often start to have more pronounced symptoms around 9:00 or 10:00 p.m., after driving the taxicab for 5 or 6 hours. But I have only begun the Prednisone.[/QUOTE]
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Keep seeing the neurologist. He might put you on another drug, like Imuran, along with the Prednisone. Imuran takes a long time to start working, but it helps some people reduce or get off the Prednisone eventually.
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I will be seeing him on February 3rd and will have plenty of time to learn more about my drug options. I found this useful from the Myasthenia Gravis Foundation of America Web site:
Note: I cannot post this link at this time. My post count is 2 and I will need to get it up to 10 before the system will allow me to post URLs. I will post it as soon as I have permission for links. It is on a MGFA Web page title that begins with: "Drugs to be avoided . . ."
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I came down with this disease in the fall of 2009. By the spring of 2010, my symptoms were as bad as they ever got. Now, four years later, I'm better than I was then for sure. Not every patient is like me, but a lot are.
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I learned that women get MG much earlier in life than men, so they are compelled to deal with it in their prime and for much longer periods. Yet another example where women get the short end of the stick.
I just turned 59 and believe that early, mild MG symptoms began when I was 57, particularly chronic fatigue. I blamed myself for this because I though I was loosing my motivation and becoming lazy.
I don't want to use the expression "a blessing in disguise", but there is an opportunity for many positive results from this. I have already dropped 70 pounds since November 2012 (even before the MG diagnosis), down from 315 pounds. My blood pressure is under control and my cholesterol is good. For the first time in several years I feel much less fatigue and am more motivated and ambitious.
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So nice to hear a happy Obamacare story!
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Yes! Before when I was a self paying patient I felt that my doctors were doing me a favor, since we got a reduced price for treatment at all levels, something around 50 percent reduction over insured patients. Since I have quality health care insurance, I feel like I can take a more proactive attitude to my treatment. For example, I would like to get to the position where I do not need the steroids. I do not like what I have read on long-term use.
Before I might not have questioned drug choices. Now I plan to take an active roll in these decisions. BTW I'm sure this was my problem, not my doctors. I probably could have been more questioning with them when I was a self paying patient.
Take care,
-Mark-