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Statin Induced Rhabdomyolysis or Myositis Disorder
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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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
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3 ReactionsI’m very surprised no lawyer will take your case.
Keep trying.
Statins aren’t for everyone.
Why was he on them without high cholesterol?
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3 ReactionsI 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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3 ReactionsSo sorry! You too!
Same here.,Pat
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.
I had an adverse reaction to rosuvastatin. I was falling down at least once a day and shuffling around. My doctor had just quit the practice. So my next three visits I saw a different PA. I finally told them no I don’t need a steroid shot I need you to run my CK levels. And yep, they were elevated. By that time I had already quit the statin, but this is two months later and I am still not back to my normal self. My legs tire very quickly. I have an appointment next week with a new PCP. I won’t go back on statins. I’ve done enough reading and educated myself that having low LDL is not the holy Grail. I too got on the keto diet and expect my other numbers to get in line.
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1 ReactionMy mother at age 90 was discovered on the floor and subsequently diagnosed with rhabdo in the hospital. She has frequent UTIs and takes a statin so who knows what antibiotic she'd taken last. One year later her doctor after I pointed this out decided that she can dump the statin at her age. Wow! Brilliant doctor.
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3 ReactionsThe diaphragm is a muscle, so is the heart. I wonder if the statins affected them. I believe that's what happened to me.
Last November I noticed my legs were weaker and basically felt off. One day I fell in my house and couldn’t get up. I called my doctor who ordered an CK bloodwork. It was found my CK levels were climbing above 7000. I was ordered to stop my statin drug and get retested in one week. When I did my level increased to over 9000. I was sent to the ER and admitted to the hospital. After several days of testing it was found to be caused by my statin drug.
We were able to look back and in April I was complaining of weakness and SOB so my primary doctor went down the heart road and ordered scans and testing with no cause. But did notice my calcium score was high and increased my dosage from 40mg to 80mg. It was then when I fell off the cliff.
My weakness continued until I lost my muscles in both legs above my knees to my upper body to the point of being confined to a wheelchair. I was placed on IVIG infusions monthly and high doses of Prednisone. I also received months of intensive PT and OT and after nine months I am able to walk short distances.
Doctors asked me if I had any pain and when I replied none they were surprised. My biggest question looking back is would it have been helpful if the CK test was ordered shortly after the increase in dosage.
Be your advocate and push your doctor to think outside the box. I was at a large teaching hospital and this happened. Good luck to all who experienced this and you are not alone.
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3 ReactionsHi, djwy131 - I am SO sorry to hear your story related to statins. Having had my own issue (damaged Achilles heel tendon which has not healed yet!), it doesn't surprise me that I am hearing more and more horror stories about statins. You are So right! If you suspect a statin is causing you physical deficits, it is a good idea to stop them immediately (consulting your doctor of course - I didn't, I just stopped immediately after I researching and learning that statins can cause Achilles heel issues.) I was shocked and horrified. No way will I ever take a statin again. It may take a long time, but I wish you a full recovery. My situation is minor compared to yours, but it will still take about 6-12 months for me to recover from my injury and swelling. 🙁
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