Immnue-mediated mediopathy explains progressive symptoms

[peter s]

A study out of Australia confirms a relatively rare (according to the authors) type of statin myopathy that is immune-mediated and may explain MUSCLE symptoms that persist or even get worse after discontinuation. The treatment, apparently successful in the few cases in the article, is steroids. According to the authors, the literature (including a study of 45 patients I have read) indicates that most people's muscle symptoms eventually resolve or improve after cessation. They sought to study what was going on in people whose symptoms persisted or got worse, and concluded there was an immune-mediated myositis to blame. Note that all the people had elevated CK. I obtained a pdf of the article from the principal author (only a very short abstract is available online) and am glad to share it if you email me pspaeth12 at comcast.net

[valgators]

Hi Peter,
I was most interested in your post. It almost described me until the part about normal CK levels. I took statins for 17/18 years and quit Feb '08. My problems are muscle/tendons, etc. Fatigue is not a huge factor nor cognitive issues. But since discontinuation of statins, the muscle problems have worsened. I am now on my third round of Medrol dosepak (prednisone) and it is about the only med that seems to make me feel better. Getting a script for it has been difficult and I do understand the caution. My CK levels always test normal.

Any thoughts on the normal CK level in light of the other info? Also, I do have hypothyroidism which figures into the auto-immune part.

Appreciate your help.
Valgators

[peter s]

Well, not sure I am of much help here but I guess reasoning backward the fact that a steroid did help you seems consistent with the immune hypothessis -- perhaps all forms of myositis do not involve CK elevation? I have also read that an elevated sed rate can be a marker of myositis for what that may be worth. Perhaps you might wish to contact Dr. Needham to see if she has any thoughts about whether a normal CK rules out the phenomenon she postulates?