[Living]

I was first prescribed statins in the mid 90’s. A few months after starting the first statin I began to feel like an arthritic old lady – still in my early 50’s. My doctor agreed to take me off them and urged me to take a break and then get back on a different statin. After a couple of months I did do that. The pain and muscle soreness started again more quickly than after the first prescription and after a couple of months the doctor took me off them and again urged me to take a break and try a 3rd statin explaining that the protocol for giving up on statins was failing three tries. About 4 months after quitting the second statin (it took longer to recover each time) I agreed to try the 3rd statin. Two days after giving me the prescription my doctor called me at home to see how I was feeling (Weird, right?) and I reminded him that I had only taken two pills. He said that the response to the medication might come on much quicker this time and I should quit taking them immediately if it does. Well two days later we left on vacation and when we got to our cabin our bedroom was on the second floor…. no problem. The next day I could not lift my feet high enough to take the first step up the stairs. The pain in my upper arms, shoulders, thighs and hips was horrible. Of course I never took another statin again…. but within a couple of years I had double vision, eyelid droop, neck pain, etc… I wasn’t diagnosed with myasthenia for many years after that because although I was tested when symptoms began I was only tested for acetylcholine antibodies and not for MuSK antibodies. I understand that only the one test was available at that time and once it was available I had doctors saying “it looks like MG but you’ve already been tested for that.” I was seeing a 5th neurologist when she said, “Wanda, it looks like you’ve never been tested for MuSK positive MG.”

I will always believe that statins precipitated my myasthenia gravis and my doctors agree. All this for cholesterol labs that were truly not that high… total 239. I think doctors at the time were just high on statins and how they were going to change cardiovascular medicine. One doctor even said to me that “before long everyone over the age of 40 will be taking statins”.

[Joe]

I am seronegative and my cardiologist prescribed a statin.l told him that statins and mg do not mix he told me to try them.well I had to stop taking them in a few days.i felt horrible.i was stuck on the couch for two days.no more statins for me.

[Teri]

AVOID STATINS; ARE CONTRA INDICATED WITH MG!. Despite providing a current list of my medications to my Neuro Muscular MG Doc, she and no one else noticed when I was put on Crestor. Less than a year later I experienced crippling “frozen shoulder” that traveled down my arm, back and chest. 2 months after that experienced horrific next to the bone charley horse cramping from my hip to foot. I could not walk for a month. Both issues were 24×7 pain that no treatment or med lessened. When I reached out to my MG doc she scribed some labs which came back showing the statin was causing the issues. 3 days after going off the statin I could sit down and the pain noticeably decreased. A month later I could walk again. 3 years later I do not yet have full function of that arm and the affected leg is still affected; sore muscles that never heal but tolerable pain. Zetia is a non statin that decreases cholesterol without the horrible side effects for those with MG. Unfortunately, I have learned I must test and research everything my doctors scribe, as they are often wrong and I’ve caught similar many, many times.

[Trish]

Statins made my muscle cramps worse, caused spasticity, and made weakness much much worse. I get moderate muscle cramps with Mestinon but the two together caused painful muscle spasticity, and caused my hands to lock in cramped claw-like positions with cramping all the way up my arm. Similar problems with my legs. I am off statins and regulate my cholesterol with daily psyllium fiber which works great and lowered my numbers to optimal.

[CAPacheco]

I was on a statin for my cholesterol for a number of years before I was diagnosed with MG. It was over a year before I knew I wasn’t supposed to be on it – following my MG diagnosis. That and a couple of other medications I was on were “no-nos” but the neuro I had at the time failed to inform me about a number of matters associated with MG. Needless to say, he’s no longer my neuro. 🙃

[rubyzmom]

I was put on statins years ago by my primary Dr, but when I went to my Neurologist he had bloodwork ordered including my Creatinine Kinase as I had lost a lot of muscle mass. When the labs came back my CK was 969, so I had to stop it immediately. Normal is less than 200, I was told. Creatine Kinase in the past was used to check if you had heart damage. Your heart is a muscle of course and it showed that the Atorvastatin I was on had been damaging my muscles. As everything else it seems my muscles are always affected since I’ve had Myasthenia Gravis.

[Mama]

I refuse to take status. A friend of mine developed very sore muscles and diabetes. My doctor is agreement. I have enough a mches and pains with MG. I do not need anymore.

[Charles Karcher]

I do not know what to think about this. I have been on Simvastatin for nearly 2 decades. I was diagnosed with gMg in 2019. None of my doctors have expressed any concerns about continuing the statin and I have experienced none of the issues in the above posts.

[JOHN A]

This is a very interesting conversation. I never thought about a possible connection with the start of using Crestor. My cholesterol was in the mid 220’s and my GP thought that since I’m in my 80’s now it might be time to start a statin. It’s in the 150’s now. I have pretty much blamed my diagnosis on having Covid 19 one month before symptoms of OMG started showing up (droopy lid and double vision), but as I look back, I started Crestor 5 months prior to the onset also so maybe I’m not as sure now. I’m very lucky that I only need one 60mg Mestonin in the morning and I’m good for all day. I started with 60mg three times a day and had some twitching and cramping issues, so I cut back to two and then only the one in the morning. I’m reluctant to eliminate that because who knows when those little AChR antibodies will decide to do their thing! Thanks for bringing this topic up.