antithynetase syndrome
geo3650
Member Posts: 3
I have recently been diagnosed with this, apparently, rare form of arthritis ans would really love to hear from someone else with it. It all seems a bit scary! Am on high doses of steroids at the moment but am shortly to go on to methotrexate.
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Comments
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Hi geo3650. I'd never heard of this so I did what I always advise others not to do with their medical conditions :oops: - I googled it and found this https://www.facebook.com/IhaveAntisynthetaseSyndrome (I don't do facebook myself but I think I'd grab any chance to talk to others if it were me. I just have RA and OA) I wish you well. I'm sure you'll have lots in common with us so please don't feel I'm trying to get rid of you If we can help, we'd love to.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hi;
I have heard of this. My brother has CMT (a neurological condition) which has occasionally been associated with antisynthetase syndrome. Was it the anti-Jo-1 antibodies you tested positive for? I was checked, but negative for these; there are others, but I haven't been tested. So far, I have been diagnosed with PsA, Raynaud's. I have Mechanic's Hands in the family and a lung disease, but I don't have either of these.
Hope you will have luck with Methotrexate.
Best wishes,
Anna0 -
Thank you, will do that as it would be good to talk to someone that has it. I did check positive for anti Jo 1 and have all the other symptoms as well. I shouldn't have looked it up on line as it was all a bit depressing. I am high on steroids at the moment, wondering what will happen when they put me on the methotrexate and start reducing the steroids.0
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Yes, consulting Dr. Google can be very depressing....On the other hand it is good for some of us that don't feel our doctor's have time to educate us fully on our diseases.
Wishing you luck that MTX works. It's a drug that takes a long time and will test your patience.
Anna0 -
Googling is OK if you just stick to tried and tested, trustworthy sites eg NHS choices and ARUK.
It's true some people find meth slow to work and experience some unpleasant side-effects at first but others of us find it helps quickly with very few problems. I hope you'll fall into the latter categoryIf at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0
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