Have PMR & GCA, anyone had this & recovered? Have bad side effects; on steroids & Methotrexate.

[optimist-ok]

Have had this condition for 22 months. Came out of the blue - no warning!

[JontyW]

I don't have either of those vasculitis types (mine is Churg Strauss Syndrome), so I don't know the details.

But if you go to this link you can download the Vasculitis UK' Route Map which is an excellent document providing a mass of information about all vasculutis types, including PMR (Polymyalgia Rheumatica) - page 23 and GCA (Giant Cell Arteritis/Temporal Arteritis) on page 21....

vasculitis.org.uk/content/d...

[optimist-ok in reply to JontyW]

Many Thanks. A very useful site.

[bumble05 in reply to JontyW]

Hi, I was diagnosed with Churg Strauss Syndrome in January this year. I live in South Wales and would love to hear from anyone else near me with the same condition..

[JontyW in reply to bumble05]

If you join the FaceBook support group called "Churg Strauss friends ..

facebook.com/groups/2286319...

You should contact the following member who comes from Newport, S Wales

Name: Colin Douglas

[jinasc]

If you go to PMR & GCA on this site you will find many people on there.

Whilst it is the commonest form or vasculities there is a dedicated Charity for PMR & GCA.

And yes, people have gone into remission with both PMR and/or GCA.

There is also a forum called pmrandgca.forumup.co.uk

[optimist-ok in reply to jinasc]

Thank you very much; all help is welcome. From my check-up today I now have to increase steroids substantially & also Methotrexate. Was hoping to decrease because of side effects - long biceps tendon In right shoulder ruptured a yr ago & now there are 2 tears in the rotator cuff, extremely painful & restricts movement considerably.

[BronteM in reply to optimist-ok]

Do keep a diary of the side effects that you are getting with methotrexate. It is wonderful for some people but I had real problems when the dose went up - and the rheumatology consultant refused to put me on anything else. Some people find it better by injection, and others if they take it twice a week, or increase their folic acid, but I was told that neither were possible in my case, and I should have more faith in the tablets!! When I asked to see someone else for a second opinion, they recognised that it was doing me more harm than good, so I don't take it any more. There are alternatives, and you can ask about them if the MTX gets too difficult. Afraid there is little you can do about the steroids and their side effects...we all have to learn to live with them! Good luck, hope you start feeling better.

[optimist-ok in reply to BronteM]

Thank you for your reply. Have been away until today, but pleased to hear from you. Waiting for tomorrow's blood test now!