Progression of Muscle Involvement

A forum to discuss personal experiences of Muscle Pain associated with statin drug use.

Progression of Muscle Involvement

Postby Nancy W » Fri Aug 21, 2015 8:21 am

Just read the newest post on the Facebook page, Stopped our Statins, on Necrotizing Myopathy...I posted this:

"Statin history...mid to late 90's, one month of Lipitor with flank pain and elevated liver enzymes...six years ago, one month of Red Yeast Rice and polyneuropathy...first episode, just stopped Lipitor, second episode, stopped RYR, found Spacedoc, treated by naturopath with Co-Q10, fish oil. Neuropathic pain subsided, but remained in my feet. One year ago, localized muscle twitching around my mid-spine, now generalized to my whole body. I walk 10,000 steps a day, but have increasing fatigue and random muscle pain. Over these same years, I learned that I have the genetic condition MTHFR, a disruption of methylation pathways, resulting in intolerance of chemicals (i.e. drugs), among other things. The genetic diagnosis explained my own mild spina bifida occulta, history of 7 miscarriages and other things. I am a physical therapist, as well as a medical social worker, so I have been around medicine for over four decades...I am in the Dolichol study group. As I read these articles, I am asking myself, should I empirically go ahead with all the diagnostic testing I am reading about here? When I look at the list of drugs used, I shudder to think about even getting involved with any of it, because of my genetic-related intolerance to most drugs...I should also add that, for most of an entire year ten years ago, I was on Levaquin, a fluoroquinolone, for what turned out to be smoldering peritonitis, before I lost half my fluoroquinolones carry a black box warning for muscle damage...What is happening to me now is definitely progressive...thinking about all this is scary, to be sure...I rue the day I began with statins...and while the Levaquin kept me alive, I just shake my head about that, as well..."

I am often, but inconsistently awakened by muscle pains and spasms, and, lying there quietly, I am very aware of the random muscle twitching (? fasciculations, which often herald denervation of muscles).

My curiosity for this group is this: how many of you are experiencing progressive symptoms years after statin exposure? If you are experiencing neuromuscular symptoms, weakness, etc., have you had diagnostic studies, i.e. EMG, muscle biopsy, CPK, etc? And have any of you had genetic testing which might elucidate why you have been especially sensitive to statins?
Nancy W
Posts: 139
Joined: Thu Sep 03, 2009 11:22 pm
Location: Bonney Lake, Washington

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