With all due respect to your doctors, I think it borders on malpractice at this point to prescribe prednisone to patients with dysferlin deficiency (i.e., Miyoshi or LGMD IIB). Prednisone has been shown to help increase strength temporarily in dystrophin patients (Duchene Dystrophy), but not dysferlin patients. I took it in 1989 when less was known and it made me feel awful. In fact, I got a secondary steroid weakness that thankfully went away after I tapered off of the prednisone. Two years later I took methylprednisolone by IV over several months. That knocked down my CPK enzyme level, but did not make me feel any stronger and, as I got off of it, my CPK went right back up anyway.
Sounds to me like your doctors are viewing all muscular dystrophies the same, and thinking if steroids help in one they'll help in another, which is too bad. I have not heard of a single case of prednisone helping in what we have.
I'm not a doctor, and am basing this on personal experience, anecdotal evidence, and what three neuromuscular specialists have told me over the past few years. If it were me, I would not only decline, but suggest that your doctors get up to speed on this issue. It's been pretty broadly recognized I think.
Of course I hope others out there will chime in too.
Joshua M. Thayer
Edwards Angell Palmer & Dodge LLP
111 Huntington Avenue at Prudential Center
Boston, Massachusetts 02199-7613
Direct: 617 239-0518; Fax: 617 227-4420
www.eapdlaw. com
My doctor wants me to take if for a month...I don't think I'm going to take it. I've heard from several people now that this product has only negative effects. I really appreciate your input on this stuff. Thank You very much! = )
--- On Wed, 10/15/08, xron922 <xron922@yahoo. com> wrote:
From: xron922 <xron922@yahoo. com>
Subject: [dysferlin] Re: Prednisone
To: dysferlin@yahoogrou ps.com
Date: Wednesday, October 15, 2008, 10:30 PM
I tried it when i was first diagnosed with the disease. Didn't help at all but I got a bunch of side effects from it. There are lots of adverse effects when taken at high doses and prolonged periods. I was on it for about 6 months at high doses and then tapered off of it over a year. --- In dysferlin@yahoogrou ps.com, "bluedestin" <bluedestin@ ...> wrote: > > My doctor just prescribed prednisone. Has anyone taken this stuff? What > were your experiences with it? > |
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