Is it March yet?
It has been since August 2013 since I have made any entries, so it is time I did an update! I finally tapered off of Prednisone in August leaving me on MTX and Imuran, and finally tapered off of Imuran in January of 2014. When this whole calamity began in June of 2012, my CPK's were 9860, nearly 10,000. Now they are at 44. I had been tapering MTX for 2 months and Feb. 3 was my last injection. So far so good, but it takes several weeks if not months to get it out of my system, so now just on 100mg of Imuran a day. With the necrotizing form of myositis I have, it can be very refractory, so we are monitoring blood work closely. My AST took a bit of a jump before I got completely off of the MTX, and we think my blood work will take a jump before I feel symptoms. So if the AST's continue to climb, I have to back on MTX.
For now, I still am swimming 3 times and week and weights twice a week or more if I can do it. Left hip is still weak, but back to normal otherwise. Two Neurologist have now told me they are surprised I have gotten off without any assertive devices. The only thing I have to prepare for now is the bi-cuspid valve and enlarged ascending aorta problem the cardiac doctor found when I was in the hospital for myositis. In 2015 I have to have open heart surgery (gulp) to replace the ascending aorta with a Dacron tube. It is a genetic heart defect and the doctor said I was lucky (!) to have it discovered before it randomly burst. I guess. One of the non-surgical ways to manage this problem is with heavy dose of statin drugs - which is may have caused the myositis reaction in the first place when I was taking Red Rice yeast supplements. Good grief.
I still have a very busy consulting business. I was really hoping for a county job as the transit director because of their very good insurance. I came in runner-up because the gal doing the hiring ended hiring an old boy friend who was desperate to work in the area. Hmmm. I still have the email with her explanation. Otherwise all is good, and yesterday the weather here was very good. Crocuses are out, and every morning I count my blessings and think of three great things that happened the day before that are things to celebrate. I hope everyone is doing OK and letting time and drugs do their "thang".
For now, I still am swimming 3 times and week and weights twice a week or more if I can do it. Left hip is still weak, but back to normal otherwise. Two Neurologist have now told me they are surprised I have gotten off without any assertive devices. The only thing I have to prepare for now is the bi-cuspid valve and enlarged ascending aorta problem the cardiac doctor found when I was in the hospital for myositis. In 2015 I have to have open heart surgery (gulp) to replace the ascending aorta with a Dacron tube. It is a genetic heart defect and the doctor said I was lucky (!) to have it discovered before it randomly burst. I guess. One of the non-surgical ways to manage this problem is with heavy dose of statin drugs - which is may have caused the myositis reaction in the first place when I was taking Red Rice yeast supplements. Good grief.
I still have a very busy consulting business. I was really hoping for a county job as the transit director because of their very good insurance. I came in runner-up because the gal doing the hiring ended hiring an old boy friend who was desperate to work in the area. Hmmm. I still have the email with her explanation. Otherwise all is good, and yesterday the weather here was very good. Crocuses are out, and every morning I count my blessings and think of three great things that happened the day before that are things to celebrate. I hope everyone is doing OK and letting time and drugs do their "thang".
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