Statin Induced Rhabdomyolysis or Myositis Disorder

Posted by kasb @kasb, Aug 9 6:12pm

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 group.

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.

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

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

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@colleenyoung

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

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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.

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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.

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@kasb

Thanks Amanda, it says I have to subscribe. 🙁

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

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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

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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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@kasb

Thanks Amanda, it says I have to subscribe. 🙁

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Oh man, I forgot about that with the NY Times. Here is the print of what was posted.

Do Statins Really Cause Muscle Aches?
People taking cholesterol-lowering statin drugs often report muscle pain, but the pain may be the same when they take a look-alike placebo pill.

Many people who take the cholesterol-lowering statin drugs report that they cause muscle pain, but a randomized trial suggests that the pain is no different when they take a placebo pill.

In rare cases, statins are known to cause a severe muscle condition called rhabdomyolysis, in which skeletal muscle tissue is destroyed, leading to serious complications. But much more frequently, people complain that the drugs simply cause muscle pain.

Whether statins are responsible for the muscle pain, however, remains uncertain. Muscle pain has many causes and is common in the older age group using statins, so determining whether statins are causing the pain is not easy. Results from observational studies, along with many media reports, may have led some to unnecessarily discontinue a treatment that is potentially lifesaving.

This new study, published in BMJ, involved a series of what is known as n-of-1 clinical trials, a methodology that allows researchers to examine the results of treatment and placebo in individual patients, rather than studying them as a group. In effect, each patient serves as his or her own control.

Researchers assembled 200 people in England and Wales who had either stopped or planned to stop taking statins because of intolerable muscle pain. For a year, each patient randomly took either a statin or a placebo pill over six two-month periods. Half the time they received 20 milligrams of Lipitor, and the other half they got a look-alike dummy pill. Until the end of the study, neither the researchers nor the patients knew when they were taking the statin and when they were taking the placebo.

During the last seven days of each two-month phase, the researchers measured each patient’s pain daily using a validated 10-point visual pain scale, with 10 indicating the worst possible pain. They also tracked other aspects of daily life, including the patient’s general activity level, mood, comfort in walking, ability to pursue normal work activities, social relationships, sleep and enjoyment of life.

The study found no differences between the statin and placebo periods in either muscle pain or reports on daily life activities and moods. Nine percent withdrew because of pain while they were on statins, but so did 7 percent who were taking placebos, an insignificant difference.

“These studies are difficult to do,” said Dr. Henry N. Ginsberg, a professor of medicine at Columbia who was not involved in the work. “This one is done as well as you can, and it’s a nice one to talk about with patients. You can tell your patients, ‘They’ve done studies in people like you, and these people couldn’t tell the difference between placebo and medicine.’”

Three months after the final treatment, when the patients had been informed of their results, the researchers asked them whether they had restarted statins, or intended to, and whether they found their own trial result helpful in making their decision. Most of the patients said that the trial was helpful, and more than two-thirds reported that they planned to start taking statins again.

The lead author, Dr. Liam Smeeth, a primary care physician and professor of clinical epidemiology at the London School of Hygiene and Tropical Medicine, said that when people stop statins because of muscle pain “they’re missing out on the huge benefits — reducing the risk of heart attack or stroke by about a third. What we’ve shown is that among these people who gave up their medicine because of pain — and their pain was real — it wasn’t made worse by statins.”

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@amandaa

Oh man, I forgot about that with the NY Times. Here is the print of what was posted.

Do Statins Really Cause Muscle Aches?
People taking cholesterol-lowering statin drugs often report muscle pain, but the pain may be the same when they take a look-alike placebo pill.

Many people who take the cholesterol-lowering statin drugs report that they cause muscle pain, but a randomized trial suggests that the pain is no different when they take a placebo pill.

In rare cases, statins are known to cause a severe muscle condition called rhabdomyolysis, in which skeletal muscle tissue is destroyed, leading to serious complications. But much more frequently, people complain that the drugs simply cause muscle pain.

Whether statins are responsible for the muscle pain, however, remains uncertain. Muscle pain has many causes and is common in the older age group using statins, so determining whether statins are causing the pain is not easy. Results from observational studies, along with many media reports, may have led some to unnecessarily discontinue a treatment that is potentially lifesaving.

This new study, published in BMJ, involved a series of what is known as n-of-1 clinical trials, a methodology that allows researchers to examine the results of treatment and placebo in individual patients, rather than studying them as a group. In effect, each patient serves as his or her own control.

Researchers assembled 200 people in England and Wales who had either stopped or planned to stop taking statins because of intolerable muscle pain. For a year, each patient randomly took either a statin or a placebo pill over six two-month periods. Half the time they received 20 milligrams of Lipitor, and the other half they got a look-alike dummy pill. Until the end of the study, neither the researchers nor the patients knew when they were taking the statin and when they were taking the placebo.

During the last seven days of each two-month phase, the researchers measured each patient’s pain daily using a validated 10-point visual pain scale, with 10 indicating the worst possible pain. They also tracked other aspects of daily life, including the patient’s general activity level, mood, comfort in walking, ability to pursue normal work activities, social relationships, sleep and enjoyment of life.

The study found no differences between the statin and placebo periods in either muscle pain or reports on daily life activities and moods. Nine percent withdrew because of pain while they were on statins, but so did 7 percent who were taking placebos, an insignificant difference.

“These studies are difficult to do,” said Dr. Henry N. Ginsberg, a professor of medicine at Columbia who was not involved in the work. “This one is done as well as you can, and it’s a nice one to talk about with patients. You can tell your patients, ‘They’ve done studies in people like you, and these people couldn’t tell the difference between placebo and medicine.’”

Three months after the final treatment, when the patients had been informed of their results, the researchers asked them whether they had restarted statins, or intended to, and whether they found their own trial result helpful in making their decision. Most of the patients said that the trial was helpful, and more than two-thirds reported that they planned to start taking statins again.

The lead author, Dr. Liam Smeeth, a primary care physician and professor of clinical epidemiology at the London School of Hygiene and Tropical Medicine, said that when people stop statins because of muscle pain “they’re missing out on the huge benefits — reducing the risk of heart attack or stroke by about a third. What we’ve shown is that among these people who gave up their medicine because of pain — and their pain was real — it wasn’t made worse by statins.”

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Yikes! This study is misleading and biased! What it doesn't identify is the very small percentage of patients that develop Rhabdomyolysis and the possibility of Liver Damage, Kidney Damage, and Death. If a provider read this study and did not research further, they would be careless in correctly monitoring patients on Lipitor. I wonder who paid for this study..

Study Criteria:
"Researchers assembled 200 people in England and Wales who had either stopped or planned to stop taking statins because of intolerable muscle pain.
For a year, each patient randomly took either a statin or a placebo pill over six two-month periods. Half the time they received 20 milligrams of Lipitor, and the other half they got a look-alike dummy pill. Until the end of the study, neither the researchers nor the patients knew when they were taking the statin and when they were taking the placebo."

Comments:
First it only includes 200 people who had been already been on Statins. That's not a large enough baseline to make conclusions. I think it's been proved that Statins definitely can cause muscle pain. From the research I've done, serious symptoms may not appear for 6+ months. If they only monitored for 6 months then switched to placebo they missed the grouping of patients that would potentially develop serious symptoms. Plus that, if muscle cramps can continue up to 3-4 months after stopping Statins, then they would be reporting muscle aches/pains during the placebo period. Trended CK's would also be important during the placebo period. Also, Many people can successfully restart a different statin. Did they change the drug or dose?

My bad symptoms didn't start until 6 months out. during that time they were masked by long Covid symptoms. Then they got significantly worse when Cyclosporine was added.
It doesn't say if they monitored CK levels routinely and matched the levels to the persons social and physical routine. Without that data this means nothing. The tipping point for me was that I had progressed to Renal failure due to the Rhabdomyolysis (GFR 14). After stopping Lipitor for 3 weeks my GFR increased to 35. It is now in the 40's. No other changes to meds were made.

This is a good article on statin associated myopathy.
https://www.uspharmacist.com/article/statin-associated-myopathy

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