antithynetase syndrome

geo3650
geo3650 Member Posts: 3
edited 28. Sep 2014, 05:40 in Living with Arthritis archive
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.

Comments

  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    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 :wink: If we can help, we'd love to.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    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,
    Anna
  • geo3650
    geo3650 Member Posts: 3
    edited 30. Nov -1, 00:00
    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.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    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.

    Anna
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    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 category :D

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