Antisynthetase syndrome : Hi everybody My... - Myositis UK

Myositis UK

1,206 members495 posts

Antisynthetase syndrome

ukezza1 profile image
2 Replies

Hi everybody

My brother was diagnosed with antisynthetase syndrome end of may. This was after going into respiratory failure and spend 7 weeks in intensive care and many tests to diagnose the problem. Does anyone else suffer from this condition? would be great to have contact with someone. I am at the moment awaiting tests to see if I am a carrier. At the moment I suffer from muscle pains which comes and goes and can vary in severity. This has been going on for last 3 years. As a family we feel isolated as not a lot seems to known about it in my area where we live.

I hope there is someone out there that can help

Written by
ukezza1 profile image
ukezza1
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Jo-Goode profile image
Jo-GoodeAdministrator

Sorry to hear about your brother, I do hope he is improving with treatment.

Although auto immune conditions can run in families, it would be unlikely for a sibling to develop Myositis/AS; I can only recall a handful of cases where siblings or parent have Myositis worldwide and I'm not aware of a case of AS.

I'm admin for a UK only facebook group and there are a number of people who have Antisynthetase Syndrome facebook.com/groups/2432609... There is also a world wide AS group on facebook facebook.com/groups/Antisyn...

Regards Jo

Titchykath profile image
Titchykath

I have been diagnosed with antisynthetase syndrome, I have PL-7, use oxygen on exertion, 5mg predisnone, 750g of mycophenolate twice a day.october 2017, but was misdiagnosed for 2 years .hypersensitivity pnuemonitus, so 2 year delay on meds. Coping , but very fatigued, top part of body muscles ache, mechanics hands but slight.also clubbing of my toenails. 🙂 coping

You may also like...

Antisynthetase syndrome and Rituximab

Hello, My mum was diagnosed with antisynthetase syndrome with ILD 2 years ago. She was initially...

Anyone have Drug-induced Myositis?

shape of fatigue and muscle pain/weakness and just didn't realise it. (Autoimmune tests always come...

Hello! Advice on who to see

Hi! I haven’t been diagnosed as really long waiting list to see someone. But have similar symptoms...

How do you get a firm Mysiotis diagnosis? What scans will show affects on muscles?

Just curious, as I’m so worn out from doing the most little tasks. I’ve had an EMG, mri Of legs and

Anyone get calcinosis?

I'm still VERY far from getting a diagnosis (thank you, NHS) and I'd have given up long since if it...