Rheumatology working up new disorder.

[SMH4CRNA]

Despite my desire to accept my condition as is and without prednisone the Rheumatologist has decided to work me up for a rare autoimmune disorder called Antisynthetase Syndrome. Althernative working diagnose is myositis r/t long term use of statins.

Antisynthetase Syndrome falls under the myositis umbrella. Clinical manifestations is proximal muscle weakness, interstitial lung disease and a dermatitis (Mechanics Hands). Confirmation of the syndrome is the detection of the Jo-1 antibody with a blood test, MRI of the proximal muscles (Upper legs) for muscle breakdown and a CT scan of the lungs for interstitial lung disease.

My PMR history is well documented here in the forum. This has been a working DX for the past couple years, but never been confirmed by Rheumatology. Symptoms started occurring February of 2021. Symptoms were proximal muscle weakness as evidence by difficulty getting out of chairs, climbing stairs and fatigue. Lab results were elevated CRP, ESR and anemia. Extensive medical workup to result in an undetermined diagnosis.

Last month I went to the Rheumatologist to what I thought was my final appointment. My labs have been normal since late last year and I have simply accepted my ongoing proximal weakness to be osteo in nature. Only significant physical change is this callus cracking dermatitis to 6/10 distal fingers. I have had this issue on my right index finger for years, but only there. Only in the last month it presented itself on the other fingers. Well, this change alerted Rheumatologist to continue to work me up for a slew of myositis disorders to include Antisynthetase Syndrome. She describes this dermatitis as "Mechanic Hands".

My blood results are back, but I will not be able to receive the results until my appointment on the 1st of July. My MRI and CT scan is scheduled for the 26th of June. My CPK is on the higher end of normal at 280 (>300 abnormal) and my Leuko and Eo % are slightly high. Otherwise all other labs appear normal except my Triglycerides, which are always high.

My suspicion is long term statin use. I have taking a statin since I was 21 years old for a genetic disposition for hyperlipidemia. I have been using a statin for 30 years now. Although, this may not explain the mechanic hands. I do not have lung issues to justify interstitial lung disease, but we will see what the results show from the CT scan on the 26th.

Anyone here have any of these other myostitis disorders or know others?

[PMRpro Ambassador]

People with myositis tend not to appear here really, But there may be some,

What an interesting concept - not sure if it's a good thing or not! Looking forward to hearing the verdict.

[DorsetLady PMRGCAuk volunteer]

hi,

Nice to hear from you again, no advice to offer, but just to wish you well.

There is a forum on here-UK based, so not sure it’s any good for you, but might be worth looking at-

healthunlocked.com/myositis...

[SMH4CRNA in reply to DorsetLady]

Thank you so much, I will check it out.

[AtopicGuy]

Well done to your rheumatologist for spotting the association between that particular form of dermatitis and muscle weakness! Hopefully, the auto-antibody tests will throw some light on what is causing what.

According to this paper, statins are safe for those with pre-existing systemic autoimmune myopathies (SAMs) and the dyslipidaemia that is associated with them:

pubmed.ncbi.nlm.nih.gov/305...

This paper suggests statin-induced myositis is usually accompanied by a massive, 10x increase in CK/CPK (creatine kinase) above normal:

pubmed.ncbi.nlm.nih.gov/220...

Like some other antibody-driven diseases that can mimic PMR, anti-synthetase syndrome (ASS) often requires a much higher dose of prednisone to force them into remission: sometimes starting at 1mg/kg/day or 100mg/day, for example. This might explain why 15 to 20mg may not have brought full relief.