RA as connective tissue disorder: cedars-sinai.org... - NRAS

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RA as connective tissue disorder

16 Replies

cedars-sinai.org/health-lib...

Have just come across this….

First time I have heard RA being referred to in this way.

I have hyper-mobility & Fibro so not learning anything in terms of symptoms…. But definitely in labelling. Is it just a USA thing???

Has anyone come across it here (Uk)??

16 Replies
Karen12 profile image
Karen12

Yes, the NHS classifies it as a connective tissue disease. I think it’s just not described that way but definitely in the category. 😊

sylvi profile image
sylvi

Interesting read darling. xxxxx

bpeal1 profile image
bpeal1

Sort of. Soon after diagnosis I had problems with my Achilles tendons. When I mentioned it to my rheumatologist she said it’s not that surprising, tendons are connected to joints and can be affected by RA too.

smilelines profile image
smilelines

I didn't really understand the diagnosis part because I have never heard of someone using a biopsy of nerves or muscles to diagnose any type of inflammatory arthritis.

Runrig01 profile image
Runrig01 in reply to smilelines

I know they do muscle biopsy for the polymyositis and dermomyositis, as my rheumatologist had discussions about doing one on me, as one of the conditions he suspected was polymyositis. However an mri of the whole body showed it was myopathy due to steroids at the time

smilelines profile image
smilelines in reply to Runrig01

oh, good to know. Thank goodness you didn’t have polymyotosis. That must have been scary. Did your myopathy go away with the reduction of steroids?

Runrig01 profile image
Runrig01 in reply to smilelines

unfortunately it’s not gone away. It was 2015 it was picked up as part of a research project, where all muscles were mri’d. It was to see if they could predict who would get certain side effects with steroids. These days I only take 4.5mg prednisolone, but that’s a replacement dose as the long term steroids caused adrenal insufficiency. So despite being on a low dose, and doing swimming and walking I still have some myopathy

smilelines profile image
smilelines in reply to Runrig01

does the myopathy show up in your blood?

Runrig01 profile image
Runrig01 in reply to smilelines

no it doesn’t. 🤗

in reply to smilelines

I never had that level of investigation; not even an MRI. I had some x-rays done, but nothing else. I would find an MRI informative tbh.

smilelines profile image
smilelines in reply to

nor have I. I would have liked to have some sort of imaging/biopsy that showed something concrete.

helixhelix profile image
helixhelix

the first rheumy I went to in the UK worked in the connective tissue unit of the hospital.

OldTed60 profile image
OldTed60

I have a diagnosis of Overlap CTD. Both RA and hypermobility are definitely in my picture although I’m only seropositive for Scleroderma and lip biopsy positive for Sjögren’s. Sjögren’s and RA are technically both connective tissue diseases and Ehlers Danlos Syndrome (there are many types) is considered a connective tissue disorder rather than a disease because it is hereditary and not systemic. But the CTD clinics I’ve attended are mostly for people with Scleroderma, Myositis and Lupus - not so much on RA or Sjögren’s if they are stand alone diseases.

Quite a few people here with seronegative RA and Lupus are diagnosed with UCTD or MCTD as the umbrella names. The undifferentiated of UCTD usually points to a mix of RA and Lupus which haven’t yet become full blown. MCTD carries its own antibody and is a combination of Lupus, Scleroderma and Myositis - often with Sjögren’s as a bedfellow. So I’m actually surprised that anyone here finds this surprising as we are all made of connective tissue ie tendons, bones, muscles and surrounding tissue as the glue that binds us !

Leics profile image
Leics

I’m convinced in my case that connective tissue disease is absolutely my worst problem sooner than joints with erosions. My last X-rays showed minimal issues with erosion of the joints but some osteo. I think the only way to see connective tissues is with MRI and not even ultrasound would give a true picture. I , like you would be very interested to find out because I felt I wasn’t believed about my chronic unending pain with all the debility that went with it. A low dose of mtx (my choice) and I’m so much better. I would be very surprised if mtx helps osteo which is only minimal anyway but my joints have improved where is more bearable so hence my voicing my opinion of connective tissue disease to rheumy and being put on mtx after many years.

tanya1981 profile image
tanya1981 in reply to Leics

hi there! What is the methotrexate dose you’re under and how long have you been on it?

Leics profile image
Leics in reply to tanya1981

Methotrexate 7.5 by injection I’ve only been on it about 4 months but have had to pause for one infection and now have to pause again for two weeks as I’ve just had covid. It has definitely made a difference my pain isn’t unending 24/7 and my mobility has improved a bit too. Not out of the woods or in what I would consider remission but definitely an improvement.

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