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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.

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Replies to "I was recently diagnosed with immune-mediated necrotizing myopthy (IMNM) November 2022. Which was brought on by..."

@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?