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.

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

callalloo | @callalloo | Aug 10, 2022

There was a New York Times article a few years back on statins that mentioned rhabdomyolysis. As with a lot or articles, sometimes the most value is in the comments. Several people posted about having rhabdomyolysis and shared comments about their treatments. All I remember is that a fluid therapy was able to help several recover completely and, in one case, also totally reverse kidney damage.

I've tried to find the article so I could post the title and URL but weather is interfering with cell signal. I hope this helps a little at least. I'd never heard of rhabdomyolysis but had terrible muscle cramping from statins, and quit them, but didn't know how serious they could be.

Amanda Burnett | @amandaa | Aug 11, 2022

@kasb This might be the article that @callalloo is talking about: https://www.nytimes.com/2021/05/10/well/live/statins-cholesterol-muscle-pain.html#commentsContainer

callalloo | @callalloo | Aug 11, 2022

It looks like one of them. Good job, Amanda!

Colleen Young, Connect Director | @colleenyoung | Aug 13, 2022

@kasb, I added your discussion to the Autoimmune Diseases group too. How are you doing?

kasb | @kasb | Aug 17, 2022

In reply to @colleenyoung "@kasb, I added your discussion to the Autoimmune Diseases group too. How are you doing?" + (show)

In the last 3 days my muscle and joint pain has gone from "I can't move without taking a pain pill " to I'm moving around without any pain medication. From 10 on a pain scale to maybe 7. My Range of motion is much improved. None of this means it wont flare up again. That seems to be what all of my symptoms do. The angioedema is still present but maybe 25% of what it was for the last 8 months. My sleep patterns are still 14-18 hours a day when I "crash". Right now that happens for 2-3 days about once a week.
I'm still waiting on my lab results. The Chemistries and CK should already be back but the Myositis panel takes longer. I'll call tomorrow. That will be 11 days.

kasb | @kasb | Aug 17, 2022

In reply to @amandaa "@kasb This might be the article that @callalloo is talking about: https://www.nytimes.com/2021/05/10/well/live/statins-cholesterol-muscle-pain.html#commentsContainer" + (show)

Thanks Amanda, it says I have to subscribe. 🙁

cantek | @cantek | Aug 18, 2022

Find a Rheumatologist at a teaching hospital near you. Do your research on the MD’s and find one with a lot of experience with autoimmune and good reviews then get on their schedule, they will figure it out, it’s their specialty.

callalloo | @callalloo | Aug 18, 2022

In reply to @kasb "Thanks Amanda, it says I have to subscribe. :(" + (show)

I subscribe but the NYT website won't let me cut-and-paste the article or I'd post it here.

t2swim09 | @t2swim09 | Aug 20, 2022

I can't address all
Of your comments but I know my daughter had severe issues with statins and found that she could only take one statin that is made by a Japanese pharmaceutical CoLibalo. Every other attacked her muscle enzymes and liver . This statin is synthetic and doesn't fo through the liver like other statins so it's not as "destructive "
Best of luck

ginaquilts | @ginaquilts | Aug 21, 2022

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.