Statins and myosotis. A warning

[Myoman]

I have necrotising myosotis which tests show is due to statin therapy. Every time I went to the doctor over several years complaining of muscle pain all they did was change the type of statin. No blood test was suggested until I had a disabling acute episode. Unfortunately stopping the statins doesn’t stop the problem. I am now going through prednisolone and methotrexate therapy. I do think that with the widespread use of statins is causing an increase in myosotis. I do think GPS should do blood tests as a diagnostic protocol before changing the type of statin. This is a very distressing and disabling iatrogenic disease which could have been avoided.

[VCoy]

Hi there I have just had a disabling episode where I couldn’t walk more than a few feet. My GP ordered blood tests and found that my CK level was 11128 as opposed to a norm of less than 300.

I was immediately hospitalised and the statins stopped. An MRI revealed myositis and I am awaiting a rheumatology referral to determine the extent of the damage and the treatment to follow.

I agree with you that regular blood tests should be the norm rather than the exception. If you are diagnosed with T2D then blood tests are routinely done but this is a stealth problem and it needs to be addressed now and on a national basis.

It would help if there was an article written for the Lancet.

I hope that you’re treatment works and that you are able to recover a semblance of your mobility.

Take care

Stay safe.

Tim.

[Myoman in reply to VCoy]

Thanks for your reply Tim. I hope you can start treatment soon. The steroids really help. All the best.

[MAuk]

Yeah. Me too Only thing for me was I didn't really have any pain or weakness until my CK level was about 6000. It sucks for sure, especially as research shows that quick action, attacking the disease with a combo of high dose steroids and more than one treatment, can perhaps reset the disease. arthritis-research.biomedce... is an interesting article, but sadly it is too late for me, I missed the early window. Knocking wood quickly I have had 3 or 4 rounds of IVIG and with this last one, my CK dropped for three consecutive months, into the 400s. Usually I get a solid month drop, a smaller month drop and by month 3 it begins to creep up. At least starting from a low number buys me time before another treatment. And in the early days of the Pandemic, my Dr. said they had suspended Rituximab as research showed if you were on that and got Covid it was "always a bad outcome" Not sure that has changed to be honest and there has been far too little research done on the effects of the vaccine on immunocompromised people. So where to from here? no idea.... The link between Statins and serious muscle issues is pretty well known by this point but all the drs. just keep telling me "We know statins save lives..."

[Powerboat]

I was on statins as well and like you my muscles etc were very painful and weak eventually I got biopsy on thigh confirmed myositis and that was 5 years ago having to stop their meds for myositis as I was getting no better so I’ve been off everything now for 20 months no difference one way or another yes people should be warned about the use of statins of course not without doctor advice as it maysave lives in others I am only putting my story here and. The. Lancet. should. Be up front about this drug

[Gus785]

Wow, so not just me then !! Was on Atorvastatin for high cholesterol for years and to be fair it worked and everything was fine. November 20 i get Covid. 4 weeks later thought i had 'long covid' so went to the Doctors. Feb Blood tests revealed CK 13000 & immediately stopped me taking the statins. Since then ive had numerous blood tests, X-rays, CT scan, MRI, EMG & Muscle Biopsy. Now confirmed with Necrotising Myopathy. Now on week 4 of 60mg a day of Prednisolone and CK level down to 1000 so beginning to feel better. Hospital has said Covid did not cause the Myopathy and there is no proven link between Statins and Myopathy - all just an unlucky co-incidence then !! I struggle to believe that Covid had no impact on my situation. Clearly the statins worked re Cholesterol but there should be more done to monitor people on long term statins and highlight the risks.

[Myoman in reply to Gus785]

Hi GusThere are a few research papers showing the link between statins and myosotis. The are on Pubmed. More research needed but I am sure there is a link especially with the anecdotal evidence.

Hope you improve quickly.

[Gus785]

Thanks very much, fingers crossed

[desnonddecker]

I was given symvastatin in 2010 after a well person checkup and a little overweight etc. I finished upin A&E after 1 tablet.

Was like Flu. terrible muscle pains whent to bed with hot water bottle was breathing fast. Ambulance reluctance to take me to hospital but finally did. Blood tests found high CK levels

told was alergic to Symvastatin and If my urine turned very dark come straight bacck in!! . Have not taken a Statin since and will not ever, 5 years later diagnosed with IBM! I believe statins can be a trigger. i Know many 55+ men having problems with fatigue after taking Statins. Refuse them!