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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.

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

paktoledo | @paktoledo | Apr 21, 2023

Hi,
I was diagnosed with Reboumylosis in Sept, 2022. I was rused to the E.R. My CPK levels were off the chart..7,000 ..I have often wondered 🤔 if it was due to me taking a statin. I have yet to talk with my doctor about this theory.
Hopes this helps!
Pat
.

REPLY
Funcountess | @funcountess | Apr 21, 2023
In reply to @patcanada "My husband took statins for 16 years. Every year, he complained to his physician he was..." + (show)
@patcanada

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.

Jump to this post

I’m very surprised no lawyer will take your case.
Keep trying.
Statins aren’t for everyone.
Why was he on them without high cholesterol?

REPLY
paktoledo | @paktoledo | Jul 10, 2023

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

REPLY
paktoledo | @paktoledo | Jul 10, 2023
In reply to @kasb "@marinab - Believe it or not no provider has checked my CK. My PCP should have..." + (show)
@kasb

@marinab - Believe it or not no provider has checked my CK. My PCP should have done that especially in January when I got really sick. Instead he turfed me to my allergist. That's when the Rhabdomyolysis started and my kidney function started to decline. We didnt figure out it was a Statin adverse reaction until mid July. The Nephrologist diagnosed the Rhabdomyolysis/Statin Adverse reaction.. but didn't run a CK. I followed up with my Allergist and asked him to run one but the tech ordered a CK-MB instead of a CK. That was 2 weeks ago. I finally just gave up. Now that I'm off Lipitor the muscle pain is starting to resolve and I'm getting some mobility back so my CK levels are probably going back down. If it flares up again I'll go to a walk in lab and have them run myself.

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So sorry! You too!
Same here.,Pat

REPLY
nowforyou | @nowforyou | May 2 9:34am

I have been fighting similar symptoms for 3 1/2 years now. Finally thought of the correlation of myalgia after 7 months on Simvastatin, then discontinued it March of 2021. At that point, finally a CK level was drawn, after one month of being off the statin, and the CK was high.
I still have pain, still have complications of not using my muscles from being in so much pain, and now, have an insufficient Adrenal gland, or Addison's because of the sterioid injections into muscles and hips I received to help alleviate the pain somewhat. The endocrinologist I saw 2 times finally ran some bloodwork and did the "Gold standard" test, ACTH/Cortisol and my cortisol came back extremely low, and even lowered during the test after receiving the IV ACTH. 3.9 and it should be at least 18. The doctor used strong language with me as to how serious this is and that I should go on hydrocortisone daily, however, it does have serious side effects such as diabetes, HBP and weight gain, and that once I am on it for 2 weeks, I woul have to be on it for life. I went to my PCP and had a 2nd opinion and weighed my options, and couldn't afford natural medicine, and was denied going to Mayo to get to the bottom of this, so after 10 days, finally went on the hydocortisone.

Everything you spoke about regarding doctors chasing diagnoses and farming out my care and not owning it, was true then and is still true. I am ready to give up again. I get close to giving up after rejection after rejection of my appeal of a referral I got to Mayo in AZ, but insurance won't cover it, even though it will be 11 months before I can see a Neuromuscular specialist where I live in NM. I do not feel that is a reasonable wait.

So much more that I would love to discuss with you and anyone else with similar symptoms. I also had COVID in December, 2023, and a really strange "virus attack my lungs" in November, 2021.
Can we post an email address on this discussion? How does one make contact and discussions a little more personable?

Thank you,
Kate D.

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