I'm a newbee.

[FranTodd]

So good to find this site. I'm 52 and was told I'm young to have GCA, but from your polls it seems not so really. I was put on 60mg a day pred for 2 months in dec, dropping by 5mg per month, so today down to 35mg. Have all the side-effects you've all described, fatigue,thin skin,moon face,weight gain, funny hair,struggling on the stairs, it's a minefield!!! I've been seeing a neurologist about once a month and finally today saw a rheumotologist for the first time. He thinks I may have PMR but says on a dose I've been on I shouldnt have the symptoms so is sending me for other tests. It seems everyone has the same,yet different experiences,all nasty. I worked as a phlebotomist in a hospital before this happened and had never heard of this illness. Its good to know that research is being done,hopefully it will make things easier in time for new 'victims'!!!

[masonc3]

FranTodd: By all means, use this and other forums to exchange experiences.

GCA and PMR are so complicated in their symptoms. treatment schedules, and

side effects of prednisone that sharing experience and ideas is what keeps us going.

[polkadotcom]

Welcome, Fran Todd! This is where you would rather not be of course, but greetings from the fellow inmates. No, you are not too young, a fair number of us here had the onset in our early 50's.

I so hope that you will get over these early difficulties and have a nice easy path along a smooth road. Do keep on sharing and asking!

[Celtic PMRGCAuk volunteer]

Welcome from me too Fran! Yes, it is true to say that each one of us can respond a little differently both to the illness and in our response to the steroids.

I'm glad you've finally seen a rheumatologist - seven months is a long wait especially for someone with GCA. It is possible to still have PMR symptoms even on high steroid doses - I started at 40mg for both PMR and GCA, and continued to suffer a certain amount of pain and stiffness down through the doses. A few lucky people do become pain-free as they reduce but they are the "lucky few"!

As a "newbee" you may find it helpful to look at the British Society of Rheumatologists' Guidelines for the Management of GCA at pmrgcauk.com/documents/... Also, Arthritis Research UK publish helpful booklets on GCA and PMR, available free of charge by ringing 0300 790 0400.

Good luck with the test results and do come back and let us know how you get on.

[mickt in reply to Celtic]

Fran im just 50 and been told same as you,but anyone any age can get any illness one gp told me makes sense ,I too large vessel vasculitis with gca poss on diagnosis ,ita as tho they don't want to admit we have got it.Also had pmr symptoims at start.