Statin Induced Rhabdomyolysis or Myositis Disorder

I found statins caused sleeplessness. I wonder if this is common. My LDL dropped 40 points, so I know it works but I also need my sleep.

Yes, my PCP was an incompetent jerk. He dismissed my symptoms and turfed me to the Allergist. And since he did not do follow up labs it got so far out of control my Kidney functions were in failure and I developed full blown Rhabdomyolysis that went uncontrolled for 6 months. It nearly killed me. Right now I don't have the option to try and restart a statin. The muscle pain and angioedema is barely starting to resolve. When I get a new PCP we'll talk about my options.

Hello~
Have any of you thought about taking Co-Q 10 along with Red Rice Yeast? Along with either a Mediterranean way of eating and or a more plant-based way of eating? I brought my lipid levels down by 40 points after I switched to this way of eating. I watch the dietary %'s on foods and stay clear of foods that are off the charts for 'fats'....like pizza!....
I don't miss eating offending foods...knowing that I have more control over my body feels better to me. Red Rice Yeast is a natural statin without the contraindications, perhaps that 'script' medications bring.

Be sure to carefully monitor your medication list if you are on a statin drug. There are some very common drugs that when combined with a statin causes severe drug interaction and complications such as Rhabdomyolysis and Acute Kidney failure. You may be OK on statins with minimal muscle cramping but adding in a temporary drug for inflammation like cyclosporine can basically kill you.. or at least your kidneys.

If anyone is taking no-flush niacin as a statin alternative, keep in mind that it acts as a blood thinner. A friend who was in an accident, and taken to an ER, bled too profusely for the injury that he had. The doctors insisted that he was on warfarin or other blood thinner and he insisted that he wasn't. Then I mentioned that he was taking no-flush niacin and they assumed that that was causing the excessive bleeding. (Actually it was the nurse who called it to their attention as the doctors weren't aware of that side effect but she'd seen it before.)

It's probably a good idea to look at any drugs or foods that are contraindicated if one is taking warfarin or and watch out for any similar side effect with no-flush niacin.

I was recently diagnosed with immune-mediated necrotizing myopthy (IMNM) November 2022. Which was brought on by increasing my Fenofibrate dosage in just 3 months by my cardiologist. I had previously been on a low dosage and didn't experience any symptoms. But my cardiologist was concerned with my triglycerides level so we opted to increase since I had already been taking the medication with no issues. We discussed briefly possible side effects, had I known what I know now I would have never agreed to the increase. As I mentioned in 3 months I went from a normal healthy life to a barely functional lifestyle. I never correlated my symptoms with the side effects from the fenofibrate. I just thought I had the flu or some other virus I was weak in the arms/legs, tired, achy all over. I finally went in to see my primary who quickly sent me for lab work. By the next day she was calling me with concern about my CK levels where through the roof 9000 and they should only be around a 100-150 give or take. She urgently referred me back to my cardiologist who got me in the very next day to review my labs. He then proceeded to tell my to discontinue taking the fenofibrate and the system would slowly subside. This was not the case for me I was the lucky 3%, the symptoms continued and escalated. He than referred me to my neurologist who was able to diagnose my systems. She has been great, I am now on prednisone which has helped overall, my CK number have come down from 9000 to 3000 in just 5 weeks. However I am still very week in my legs and arms according to my neurologist this part takes the longest for recover. In addition to those symptoms I have also been breaking into hives more frequently. I've had this issue prior to my diagnosis according to my allergist I have bad allergies with food and the environment. But reading some of the posts I'm going to go back to my allergist and have them run more tests. Need to find the post that listed the symptom. One of my main concerns is the lost of muscle weight during this time. I have roughly lost over 25 pounds in muscle. I'm currently at a point if I squat down to the floor I won't be able to pick myself straight up on my own. I now have a temporary handicap card. There are days I can barely get into my truck and that's using my legs and arms to pull myself in. I'm use to doing everything now I have rely on others to help which is not fair for those around me. Looking back there probably should have been better monitoring for the 3 months my dosage was increased. All it would have taken was basic monthly lab work and we would have caught it sooner but for some reason that was not part of the care plan.

As for my timeline my neurologist is thinking 6 months so May 2023 I should be feeling much better and possible can start working on strengthening my arms and legs. This can change as there is really little information on IMNM and according to her it's up to the body to tell you when. In my recent visit she was discussing alternative medication and treatment. My neurologist is recommending Intravenous immune globulin (IVIG) treatment. She is also wanting to eventually take me off prednisone and mentioned the following azathioprine or methotrexate medications. I've done some reading and not sure if this is for me. If anyone has had this treatment for necrotizing myopathy and or taking the medication listed above and is willing to share their experience I would greatly appreciate it.

I was recently diagnosed with immune-mediated necrotizing myopthy (IMNM) November 2022. Which was brought on by increasing my Fenofibrate dosage in just 3 months by my cardiologist. I had previously been on a low dosage and didn't experience any symptoms. But my cardiologist was concerned with my triglycerides level so we opted to increase since I had already been taking the medication with no issues. We discussed briefly possible side effects, had I known what I know now I would have never agreed to the increase. As I mentioned in 3 months I went from a normal healthy life to a barely functional lifestyle. I never correlated my symptoms with the side effects from the fenofibrate. I just thought I had the flu or some other virus I was weak in the arms/legs, tired, achy all over. I finally went in to see my primary who quickly sent me for lab work. By the next day she was calling me with concern about my CK levels where through the roof 9000 and they should only be around a 100-150 give or take. She urgently referred me back to my cardiologist who got me in the very next day to review my labs. He then proceeded to tell my to discontinue taking the fenofibrate and the system would slowly subside. This was not the case for me I was the lucky 3%, the symptoms continued and escalated. He than referred me to my neurologist who was able to diagnose my systems. She has been great, I am now on prednisone which has helped overall, my CK number have come down from 9000 to 3000 in just 5 weeks. However I am still very week in my legs and arms according to my neurologist this part takes the longest for recover. In addition to those symptoms I have also been breaking into hives more frequently. I've had this issue prior to my diagnosis according to my allergist I have bad allergies with food and the environment. But reading some of the posts I'm going to go back to my allergist and have them run more tests. Need to find the post that listed the symptom. One of my main concerns is the lost of muscle weight during this time. I have roughly lost over 25 pounds in muscle. I'm currently at a point if I squat down to the floor I won't be able to pick myself straight up on my own. I now have a temporary handicap card. There are days I can barely get into my truck and that's using my legs and arms to pull myself in. I'm use to doing everything now I have rely on others to help which is not fair for those around me. Looking back there probably should have been better monitoring for the 3 months my dosage was increased. All it would have taken was basic monthly lab work and we would have caught it sooner but for some reason that was not part of the care plan.

As for my timeline my neurologist is thinking 6 months so May 2023 I should be feeling much better and possible can start working on strengthening my arms and legs. This can change as there is really little information on IMNM and according to her it's up to the body to tell you when. In my recent visit she was discussing alternative medication and treatment. My neurologist is recommending Intravenous immune globulin (IVIG) treatment. She is also wanting to eventually take me off prednisone and mentioned the following azathioprine or methotrexate medications. I've done some reading and not sure if this is for me. If anyone has had this treatment for necrotizing myopathy and or taking the medication listed above and is willing to share their experience I would greatly appreciate it.

My husband took statins for 16 years. Every year, he complained to his physician he was feeling weaker. He was told, he was getting old. Finally after an allergist checked his CK he saw a specialist, who suggested he get off the statins. She said, "I don't know what is happening, but the statins aren't helping." The drugs were stopped but it was too late. He landed in ICU on a ventilator. After 104 days, in 2 different ICU units and hundreds of tests and biopsy's. He was sent home with the ventilator to die. In 6 months, we sent the ventilator on to some other poor soul. He is back to work, driving and living a full but extremely weak life. No doctor will acknowledge it was a statin induced. No lawyer will touch us. No treatment is encouraged. It's now 3 years, statin free. He does not have high cholesterol. We move forward alone.

@swfanzz I’m sorry that you’re having a difficult time with so many doctors. You asked if anyone else has necrotizing myopathy or is taking the same medications as you. You can look up previous discussions by following these steps: at the top of the page, find the search box; enter what you are searching for, like necrotizing myopathy; hit the drawing of the magnifying glass; several discussions will pop up. Click on each one and see what you can find.
Let me know if this works for you, ok?

I have gone to 2 Integrative Internal Medicine Doctors. They both ran the following tests on me to determine if my somewhat high triglyceride levels would benefit from a Statin. They ran C-Reactive Protein, Homosytine Levels to see if I had a type of inflammation that causes plaque formation. Also, a test (blood), that looked at the type of cholesterol that I had. My first 2 blood tests, showed NO inflammation. The cholesterol test, ( I don't remember the name), showed, " fluffy, large, unstuck cholesterol molecules," according to my doctor. Therefore I would not benefit from statins. These tests should ALWAYS BE DONE first, before going on statins.