Antisynthetase syndrome

[ukezza1]

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

[Jo-Goode Administrator]

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]

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