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Statin Induced Rhabdomyolysis or Myositis Disorder

Posted by kasb @kasb, Aug 9, 2022

I’m not sure if I should post this in the Auto-Immune or Muscles, Joints and Bones.
I'm looking for others who have recovered from Statin induced Rhabdomyolysis to share their recovery experience after stopping the medication. Did muscle and joint pain get worse before it got better? How long did symptoms persist? My research says 3-4 months.
Any feedback from people suffering from a myositis type of disorder would be appreciated too. I’m still not convinced it’s Rhabdo considering the symptoms are increasing after I stopped the Lipitor. In my research I found that Autoimmune Necrotizing Myopathy (NAM) / Immune-Mediated Necrotizing Myopathy (IMNM) is also caused by statins. My symptoms fit better for IMNM than Rhabdomyolysis.
My history is long and tangled. To this day I still don't have a confirmed diagnosis.
My Primary Care Doctor prescribed Lipitor in June 2021. At the time I had been suffering with Long Covid since February 2020. My Long Covid (LC) symptoms were still all over the place and masked the symptoms of Statin Intolerance. I started on Xolair Injections in November 2021 and it reduced some of my symptoms but I didn’t respond as expected. We know now it was because the symptoms were caused by the Lipitor intolerance. LC symptoms were always evolving. It was a fluke that I identified the statin reaction. I chose to stop taking the Lipitor temporarily to try again to take Cyclosporin to reduce inflammation to treat Long Covid symptoms. Statins and Cyclosporin don’t mix. I figured that out in January 2022 after a month on both drugs and feeling like I was going to die, I researched and found the drug interaction. This was when my Kidney function started decreasing. I was in Acute Kidney failure last month. Stopping the Lipitor my GFR went from 15 to 35 in 3 weeks.
I’m 6 weeks off Lipitor. Before I stopped the Lipitor I had occasional issues with muscle/joint pain. After I quit taking the Lipitor my Long Covid symptoms pretty much stopped with the exception of the Angioedema (in retrospect, probably caused by the statin intolerance). Muscle and joint pain in my extremities started and has increased to intolerable in the last 2 weeks. My mobility is very minimal. Range of Motion in my arms is maybe 50% of what it was. At this point I’m not even sure it is Rhabdomyolysis. Physicians have been very little help. I researched and identified Rhabdo as a possible diagnosis and they believed me. No one has even run a CK to verify. My PCP turfed it to my Allergist, so did the Nephrologist. No one wants to own it. My Allergist is repeating the Chemistries, CK, and running a myositis panel. I’m waiting on results. I love my Allergist. He’s been great but I can’t keep sitting on the back burner to see it this muscle & Joint pain resolves. If it’s auto-immune then I could find treatment options. That’s why I researched the Mayo Clinic and found these Groups today.

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Profile picture for dskellchock
dskellchock | @dskellchock | Aug 28 7:04pm
In reply to @paktoledo "I agree with no one is trying to find answers for Rhabdomyolysis! I woke up in..." + (show)
Profile picture for paktoledo @paktoledo

I agree with no one is trying to find answers for Rhabdomyolysis!
I woke up in a hospital bed. Bed ridden, I. V. going , no memory of the past goings on for most of 3 weeks! I was passing dark red urine! Later, I found out it was because of
the breakdown of blood in your muscles!
This was in September to October, 2022!
I see a Rheumatologist, Neurologist, and PCP.
I am a retired health care worker, Dietitian. I have many friends/family in the health care industry!
No one was able to pinpoint the issue for my condition! One friend suspected statin use!
I read the article, posted on this board regarding statin use! My cholesterol was running 240...My internal Medicine M.D. started me off on 20 mgm Lipitor per night.
Just started taking 10 mg 2 nights ago. I contacted my dr
about increased exercise and wt. loss. She agreed to back me down to 10 per night. Soon, I hope to be off of it altogether
None of my doctors will discuss
with me, or explain, how I hot RHABDOMYOLYSIS
More research needs to be done!
Hope this helps someone else.
Pat

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Hi, paktoledo- Doctors are reluctant to tell the truth about statins, because some people it seems tolerate them well, and two, they have to face the pharmaceutical companies. They know very well that statins are poison for some of us, me included. After reading all the comments related to statins, I feel very lucky that I am not suffering more. What I don't understand is why after 3 months off my statin that my legs nerves are still upset! I am hoping for a full recovery from my leg discomfort and Achilles heel injury from my statin, but I'm gonna be really shouting expletives if my nerves are permanently damaged. We have to be So careful these days about the drugs shoved down our throats on TV. They shouldn't even be advertising these drugs to the general public in the first place. My advice is "be aware" and "beware". I am not a doctor, but I know that Rhabdomyolysis can be caused by taking statins!!!!! It is one of the more serious side effects 🙁 Wishing you the best! I empathasize with your agony! d.

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Terrez | @terrez | Oct 4 12:47pm
In reply to @ginaquilts "My employer-provided health insurance is a large and stingy HMO who would rather prescribe pills than..." + (show)
Profile picture for ginaquilts @ginaquilts

My employer-provided health insurance is a large and stingy HMO who would rather prescribe pills than do the tests to see if they are even necessary. Without even doing a cholesterol test, my primary care doctor prescribed Lipitor because I had reached the magic age of 60. Within 24 hours I was experiencing severe muscle pain and a day later I could hardly walk. When I told her that I had stopped taking the Lipitor because of the pain, muscle weakness and fatigue and that my symptoms resolved over the next few days, my PCP acted like I was a snowflake who was unwilling to tolerate pain. She also refused to order any tests to see what was causing the pain.

I immediately changed my PCP and contacted my siblings, one of whom is an MD, and discovered that they both had statin intolerance. My brother also had permanent nerve damage from the statins he tried, a rare but documented side effect. My new PCP first had me get a cholesterol test and then had me try two different statins for my slightly elevated cholesterol. Again, I had the same reaction with each of them, even the low-dose statin. Fortunately, the muscle pain and fatigue resolved shortly after stopping them. Since the new PCP refused to make a referral to a neurologist or rheumatologist (standard procedure at this HMO), I saw an out-of-network MD who prescribed a PCSK-9 inhibitor. Unfortunately, this group of drugs is really expensive and my HMO won't cover it. Ironically, Medicare does cover it, so I will have to wait until I retire before I try it.

I am so sorry for your experience. It is not fun to feel as if you have aged 30 or 40 years overnight and nobody can or is willing to find the answers.

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@ginaquilts
I am so glad your pain has resolved. Sounds like you needed a new pcp.
Have you talked to Dr about Ezetimibe. I see that is a much safer option than a statin? I am thinking about trying to get Ezetimibe prescribed by someone.
I was prescribed Atorvastatin a couple months ago as my cholesterol test came back high. It's been creeping up as well as my A1c glucose levels for several years. I have not started the statin yet due to being on several meds already and also a biologic injection for auto immune diseases, ankylosing spondylitis, & scoliosis pain and on Otezla for psoriatic arthritis. I wanted to do a little research on the statin first but now that I have, I am not sure what to do.
I already hurt so much in my hips, back, and neck, so I don't want to take a chance to have more pain, yet I don't want to have high cholesterol and glucose.
I asked my pcp if she could prescribe a safer alternative since I am on Bimzelix (Biologi

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marinab | @marinab | Oct 7 4:08am
In reply to @callalloo "Thank you for the post. I did have creatine checked but don't remember the result. I..." + (show)
Profile picture for callalloo @callalloo

Thank you for the post. I did have creatine checked but don't remember the result. I tried a all of the statins on the market, over time, and they all triggered really painful (and I thought dangerous) leg cramping so I don't take any of them. I still have elevated cholesterol but mostly of the larger molecule size which is also less likely to clump or cause arterial buildup so my cardiologist is less concerned about the statins now.

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@callalloo Please note the test should be Creatine Kinase (CK) which is different to Creatnine. The CK test is to asses damage to muscles whereas Creatnine relates to waste from kidneys. In my case high dose of statins created elevated CK which cause muscle ache. While I am still on a very low dose of statins (5mg istead of the iitial 20 mgs prescribed after I had heart stents put in) my CK levels are in check and my cholesterol levels are better than normal according to my cardiologist. @kasb: This is primarly thorugh keeping to a low carb, high protein/fat diet . I prefer not to do full Keto so my diet is more of a Mediterranean diet with low carb. I eat a lot of fish, specially salmon and sardines, chicken, reasonable amout of beef, avocados, virgin olive oil. I limit my vegetables to brussells sprouts, cabbage and a small mixed salad of lettuce and tomatoes. Sadly I have to limit most fruit as they tun into sugar which is bad for you. But I do eat few blueberrie each day to satisfy my fruit cravings. kasb This is primarly thorugh keeping to a low carb, high protein/fat diet . I prefer not to do full Keto so my diet is more of a Mediterranean diet with low carb. I eat a lot of fish, specially salmon and sardines, chicken, reasonable amout of beef, avocados, virgin olive oil. I limit my vegetables to brussells sprouts, cabbage and a small mixed salad of lettuce and tomatoes. Sadly I have to limit most fruit as they tun into sugar which is bad for you. But I do eat few blueberrie each day to satisfy my fruit cravings.

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cjval52 | @cjval52 | Oct 8 10:52am

My husband had a really high CK a few years back and they took him off his statins for a few months. Reintroduced them at a much lower dose and he did well until a few moths ago and he was again taken off Crestor (rosuvastatin) and switched to Repatha injections. He also takes zetia. Waiting ti see how the repatha works for him.

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