• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

HMGCR anti-body test and statin caused necrotized myopathy, something new

pogoman

Senior Member
Messages
292
I did a search here and I could not find any mention of the HMGCR enzyme/gene and its role in a fairly new type of myopathy classification.
Not sure where to post this, here or in the genetic forum.

Earlier this week my neurologist called me out of the blue and left a message he had ordered a blood test that just recently came out, called the HMGCR antibody test.
I had to talk to the hospital's lab supervisor on when to come in, they have not done this test before and they want to ship it out to the lab for processing asap after the blood is drawn.

So doing some googlefoo, this is an statin triggered autoimmune myopathy that gets worse after cessation of statins, is usually non-inflammatory and has many of the same symptoms of other myopathies.
There is a strong linkage between having this myopathy and testing positive for certain HMGCR antibodies.
Apparently John Hopkins and other groups have been working on a commercially available test for the HMGCR antibodies and its been available since at least last year.
Treatment involves steroid type meds and IVIg, possibly for life.

Some info from a lab offering the test (PDF).
http://www.rdlinc.com/rdlinc/wp-content/uploads/2014/02/Anti-HMGCR_Autoantibodies_February_2014.pdf

A presentation from John Hopkins (PDF)
FWIW I am hetero for the SNP mentioned in it.
https://acr.confex.com/acr/2013/recordingredirect.cgi/id/2279

The way my neurologist talked, he seemed confident that I have this.
He had previous done an EMG with abnormal readings and ordered my muscle biopsy that showed an unknown myopathy, he is pretty conservative so this is a change up.

Forgot to add, I had bad muscle pain develop when starting out on two different statins back in 2012.
I was also on various fibrates before that for several years before I quit them due to bad side effects.
 
Last edited:

pogoman

Senior Member
Messages
292
My neurologist emailed me the test results and they were negative for the antibodies.
So that is a dead end altho after reading my muscle biopsy report it does seem I do have an necrotizing autoimmune myopathy (NAM), unfortunately because its a new classification there is not alot of research or specific tests.

But he has started me on prednisone for a few weeks, I have had possible relapses from the hot weather the past month to where I quit iodine and some other supplements and resumed on the meloxicam.

I also received a summary of my muscle biopsy from a year and half ago.
The conclusions after testing and electron microscopy were myopathy with single fiber necrosis and moderate degree of regenerative/degenerative changes and also rare single fiber atrophy, consistant with denervation.
There was also a comment about collagen bundles consistant with a slight endomysial fibrosis, seems to related to muscular dystrophies from what I've read.
 

South

Senior Member
Messages
466
Location
Southeastern United States
Another nail in the coffin of statins. They are awful.

Moreover, a cardiologist, in this article, states "what is emerging is a sharp contrast between the results of the original clincal trials and the "real word" experience. While clinical trials found only 1 in 10,000 patients given statins experienced a minor side-effect (0.01%), a study of 150,000 patients prescribed statins by their GP, showed 20% had such unacceptable side effects they stopped taking them."

http://www.medicalnewstoday.com/articles/267834.php
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
My father was put on statins by his GP, and developed muscle aches. My mother basically forced him into stopping them as he thinks doctors can do no wrong....
He is now a type two diabetic with severe progressive myopathy.....
It would be interesting to know more!
 

Gingergrrl

Senior Member
Messages
16,171
We convinced my father in law to stop taking statins a while back and he is doing much better without them and dodged a bullet IMO. I have never taken one but was severely injured by an FQ antibiotic and some of the damage they cause are very similar.
 

pogoman

Senior Member
Messages
292
On second day of pred @ 40mg, pain improvement to where I stopped other pain meds, no mental or emotional issues, IBS is calm, slept pretty good too.
I am wondering if the neuro will see a good response to pred as an indication that I do have an autoimmune disease.

@pogoman would this apply only to muscle damage/weakness from statins or also to fluoroquinolone antibiotics? No worries if you do not know!

I have looked but not seen any mention of FAs and NAMs.
there is a list of myotoxins in the Hopkins PDF I linked above, some may be antibiotics.
For my condition, I am leaning toward fibrates first started 16 yrs ago as a trigger for an underlying muscle issue, complicated by MTHFR.
Methylation and mito supplements have helped me a lot the past year but I've also had unexpected relapses, a noninflammatory autoimmune reaction would account for this.


Didn't read the whole thread but yes it appears to be a similar autoimmune response with different antibodies.


A couple more links about NAM, I have only found two antibody tests so far that check for specific NAM subtypes.
One is the HMGCR test I took, the other is called the anti-SRP antibody test.

http://www.ncbi.nlm.nih.gov/pubmed/26192196
Abstract
IMPORTANCE:
Necrotizing autoimmune myopathy (NAM) is characterized pathologically by necrotic muscle fibers with absent or minimal inflammation. It is often accompanied by statin therapy, connective tissue diseases, cancer, and autoantibodies specific for signal recognition particle (SRP) or 3-hydroxy-3-methylglutaryl-coenzyme A reductase (HMGCR). Data are limited concerning differences among etiologic subgroups and treatment outcomes in NAM.



http://www.medpagetoday.com/Neurology/GeneralNeurology/52666
Necrotizing autoimmune myopathy is a recently defined subcategory of the acquired idiopathic myopathies. It is characterized by progressive muscle weakness that often becomes disabling and elevated creatine kinase levels, although patients rarely have inflammation, and thus it's believed to be an autoimmune condition.
It's been seen in patients taking statins, in those with cancer or rheumatologic disorders, or it occurs idiopathically.