A SAFTYRMA PAGE

Technical
    Papers
    News

Credentials

Humor

Myasthenia
Gravis

Birdie's
Pages

Ginny's
Pages

Other Cat Relatives

Budgie
Guests
  -Pico

Myasthenia Gravis (Continued)

Treatment:

Was I dumb or what? During the entire 3 or so year period prior to the diagnosis, every specialist I consulted said something like "You could go to a neurologist but your symptoms are too local to expect much from such a visit". I can't blame them since I heard the suggestion often enough and I am an adult, chronologically . 

If you have MG, it can probably be treated.  Most of us MG patients end up on two or more of three medications: Mestinon (minimal side-effects)  for the mildly affected, Prednisone (nasty steroid stuff ) that works especially for us old guys,  and Imuran (semi-nasty stuff that partially works in my case). I'm presently taking all three in an attempt to being transitioned from Prednisone to Imuran, a long process. Imuran is a mainline treatment that normally takes about 6 months to becoming effective.  Imuran does not appear to be as effective as Prednisone in my case so I'll probably be stuck taking all 3 for a long time. Some people have the removed. In such cases, the gland is enlarged, attacked by tumors, and/or overactive. I assume, in these cases, the gland must be removed. Some sources on the web suggest this is the mainline treatment for MG but not with my neurologist. My Thymus gland appears to be normal and I'm grateful that I didn't need the surgery. Once my disease was identified, my internist (primary care?) uncovered two more undiagnosed cases. He was surprised to hear of Thymus gland removal as a treatment (from me).

A recent note. There are some medications that aggravate MG. I found the link on Terry Riley's  website to such medications which I've adopted here. Two of the medications I was taking fit this category. One is not optional but I've changed the other  medication with positive but not dramatic results.

My Status:

 In my case, it took about 4 months of using MG medications for major improvements to be obvious, even to me. Some improvement, however, was noticeable fairly quickly with initial dosages of Mestinon. 

As we entered 2000, I had been under treatment for MG for about 9 months.  My status at this point of time and prior to the attempt to transition to Imuran was that most of my symptoms were gone. Remaining was digit and feet cramping and fatigue late in the afternoon. This may not be due to MG, but I think (or hope) it was/is.

After the year 2000, the medicine side effects were worse than the residual disease symptoms. But, as Paul Harvey says, "That's another story." My fingers remained weak and if I applied much pressure, sometimes as little as using a knife to cut real bread (another family passion), I lost some control over my fingers. If I applied a lot of force through my fingers such as opening a jar or squeezing pliers it was very painful. Thus the planned transition to Imuran. At the time, I felt that increasing the dosage of Prednisone would probably have totally suppressed my symptoms, but the side effects of Prednisone usage are accumulative and undesirable. Double vision, mandible, and tongue symptoms were all gone and with them the driving and walking insecurities. Actually some double vision remained at extreme angles but I was only vaguely aware of it. As noted above, I still suffered somewhat from fatigue but I am very "out of shape" and my verbal communication skills in the morning, before the Mestinon kicks in, required patience at the other end of the conversation. 

I take many varieties of medications in addition to the three MG specific ones accumulated while attempting to treat the symptoms, as they developed. I am still experimenting to see if any of these "medical patches" for my symptoms can now be eliminated since the disease is under control.

8/12/00 A short update: The transition to Imuran or more probably from Prednisone didn't go smoothly. Prednisone was decreased from 45 mg every other day to 35 mg every other day.  It took about 8 months for Imuran to kick in. Significant weakness in the my hands and cramps in my hands and feet have existed for much of this time. Just as importantly, peripheral double vision and general fatigue symptoms returned noticeably but not nearly as bad as they were before treatment.  Statistically, Imuran was suppose to kick in any where from 4-12 months but typically at 6 months. It didn't help that a I screwed up my medication schedule by accidentally substituting Prednisone for Mestinon for a period of over two weeks in addition to taking my normal amount of Prednisone. Things regressed pretty badly near the end of this mistake but all that seemed to be flushed from my system fairly quickly. What was also clear is that continued use of Mestinon is necessary. I also concluded that the finger cramps were at least in part (but not all) protests of very weak muscles. The cause of toe cramps probably had a similar cause.

9/24/00-12/25/00 Another short update: On the good side, I'm down to 25 mg of Prednisone every other day. The residual symptoms suggest this is far as I can go, at least for a while. My guess is that the Imuran finally kicked in (about 8 + months). Incidents of finger and toe cramping are becoming rare. On the bad side, Type II diabetes also kicked in. Another reason for attempting to dump the Prednisone. My sugar level was brought under control by diet and oral medication.  The diabetes may, however, be caused by my excessive weight and sedimentary life style rather than the Prednisone, a reasonable hypothesis. During this period I took a vacation to Orlando and a subsequent cruise. Two years ago earlier, we went to Orlando and I just couldn't get around Epcot. One year ago we went on a cruise and I could barely  get around. I had minimal trouble on this year's vacations. That is progress! A little less heartening; Throughout my MG treatment experience I've had varying degrees of double peripheral vision. In December of 2000, the area where peripheral vision is present is somewhat wider (but tolerable) than when I was stabilized on 45 mg of Prednisone (every other day & with no Imuran). The level is Imuran is now being increased and I'll be experimenting with increasing the amount of Mestinon soon. The current level of Mestinon was established by body tolerance. 

2/26/2001 Update: Over the last 5 or so months, my Imuran level was increased by 12.5% and Mestinon by 33% (I seem to have more tolerance now). A switch was made from a calcium channel blocker hypertension medication to an ACE inhibitor. This was all done a step at a time to see if improvements in symptoms were noticeable. The net result is that my symptoms have cleared up significantly. They are comparable to what they were when I was on 45 mg of Prednisone every other day. The only residual symptoms are very mild double vision, occasional finger and toe cramps, and major fatigue. The next step is a further mild decrease in Prednisone. 

9/2/01 Update: I've spent the last 6 months or so taking 20 mgs of Prednisone ( plus the Mestinon and Imuran) every other day with only mild ocular symptoms. Hopefully in another week or so, the 20 mgs will be reduced further. A new note. My neurologist requested that I start walking for exercise also about 6 months ago, although it seems longer. I now walk at a fair pace almost every day for about 35 minutes and have seen very positive results in energy level, and improvement in muscle tone and cramping. Starting was difficult but the results were worth it. Partially stratified muscles seem to be normal now. I didn't try this until the MG symptoms were under control. I doubt I could have gotten any real exercise until the treatment was effective. 

5/21/02 Update: The news is all good but not perfect. I have been weaned off of Mestinon and am down to 5 mg of Prednisone every other day. The Imuran is working and is sufficient on its own.  I still have mild ocular symptoms which has only been eliminated through the heavy use of Prednisone. My finger & toe nails are highly ridged and split a lot. The Imuran was identified as a suspect by one doctor. My PT & PTT are extended. The cause doesn't seem to be isolatable.  For the good, I have lost much of the weight I gained as a result of using the Prednisone but still remain pretty darn fat. I still take a 35 minute walk most days and it truly has helped. I've tried to reduce the Cimetrine (One of the Histamine II blockers) but keep chickening out. It isn't clear if I need it or not.  

The saga continues                                   Some personal thoughts on being a MG patient. 

This page hosted by Get your own Free Home Page