I recently read some comments in the Muscular Dystrophy Association's "Ask the Experts" column http://www.mdausa.org/experts/viewall.cfm?id=89 from a person who said that he was diagnosed with myotonia congenita 27 years ago following a muscle biopsy (strange way to diagnose it?). He elected to just live with the condition with no treatment, but happily discovered that when he took certain medications for his high blood lipids (hypertriglyceridemia), his myotonic symptoms abated. He mentioned Lopid (gemfibrozil) and the statins, Lipitor (atorvastatin) and Zocor (simvastatin). His response is paradoxical because Lopid and the statins are known for their sometimes negative effect on muscle. They can cause muscle pain and inflammation and even on occasion, muscle destruction (rhabdomyolysis). They can also increase muscle tone and have a myotonic effect.

I thought it would be interesting to see what experience people who frequent this web site may have had with taking Lopid or any of the statins. Did the drugs produce a positive, neutral, or negative effect on your myotonia?

The statins also include Lescol (fluvastatin), Mevacor (lovastatin), Pravachol (pravastatin) and Crestor (rosuvastatin).

Anne H. RPh

My Myotonia [which can be severe]has lessioned over the last year,for reasons unknown.I do take Zocor,but cannot make any connection,as I take alot of different meds that would make it difficult To say.I have always been a light eater,but have cut my sugar intake to a fraction of what it used to be.Jan is right on about diet,that alone can be very helpful.We deserve a cure,treatment as much as any other disease,I have cheated death a few times.The severe outbursts[as I call them]can be at the least,down right scary with no control whatso ever.Tom

my dad never had any symptoms of myotonic dystrophy until they put him on lipitor. now he's been diagnosed, 10+ years after me

Statins certainly unmasked my husbands myotonic dystrophy and contributed to 14, near fatal ,arrythemias to his heart. Procainamide saved his life and(this is remarkable) virtually all symptoms of myotonia are gone--he can unclasp his hands and feet, his jaw no longer locks, and his tongue does not get tied. Does any one out there take procainamide?

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Replying to:

my dad never had any symptoms of myotonic dystrophy until they put him on lipitor. now he's been diagnosed, 10+ years after me

Statins certainly unmasked my husbands myotonic dystrophy and contributed to 14, near fatal ,arrythemias to his heart. Procainamide saved his life and(this is remarkable) virtually all symptoms of myotonia are gone--he can unclasp his hands and feet, his jaw no longer locks, and his tongue does not get tied. Does any one out there take procainamide?

Have tried numerous statins.
Each one made the myotonia much worse.