I am a doctor, although not a neuromuscular specialist. But even among
neuromuscular specialists there is alot of controversy on how to
manage this disease as there is alot of individual variability in the
clinical course. Yes, i have tried CoQ10 and creatine too. If you look
at some of the older posts I think I listed most of the things I've
tried before. I believe there was a CoQ10 clinical trial in the past
too but i don't think the results were all that positive. I didn't
notice much effect taking CoQ10 although I never remained on it
consistently. I still take creatine on and off. I don't think creatine
can hurt but it's hard to tell with a slowly progressive disease such
as ours whether it really is helping to slow progression of the
disease or not. I don't think i've gotten alot stronger from any of
the things i've tried so far but whether any of it is slowing down the
progression of disease is debatable.

--- In dysferlin@yahoogroups.com, John B <bluedestin@...> wrote:
>
> Dear Joshua,
>  
> Thank you for your opinion. I have made my decision, no bad pred for
me!  By chance have you taken CoQ10 and creatine? If so, did you
notice a benefit from them?
>
> --- On Thu, 10/16/08, Thayer, Joshua <jthayer@...> wrote:
>
> From: Thayer, Joshua <jthayer@...>
> Subject: RE: [dysferlin] Re: Prednisone
> To: dysferlin@yahoogroups.com
> Date: Thursday, October 16, 2008, 10:51 AM
>
>
>
>
>
>
>
> 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
>  
>
>
>
>
> From: dysferlin@yahoogrou ps.com [mailto:dysferlin@ yahoogroups.
com] On Behalf Of John B
> Sent: Thursday, October 16, 2008 12:50 PM
> To: dysferlin@yahoogrou ps.com
> Subject: Re: [dysferlin] Re: Prednisone
>
>
>
>
>
>
>
>
> 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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