Another new member so thought I would tell my story. Now the wrong side of 70, just, PMR reared its head in 2009, started off on 15mg Pred

[bluespot]

reduced down to 1mg by the middle of last year when I came off the pills and thought that was that. March this year the PMR systems returned together with head problems, tenderness either side of the temple. uncomfortable when swallowing and minor headaches, did wonder whether I had GCA. Saw doctor he was concerned, temporal biopsy within a week and GCA confirmed now on 60Mg of Pred, question I have is if they need a biopsy to tell whether you have it how is it worked out when to reduce the dosage. Will be seeing the doctor very soon so will check with him but just wondered.

[DorsetLady PMRGCAuk volunteer]

Hi blue spot,

Sorry to hear you have GCA/TA, and are on 60mg of Pred, not nice, but necessary. There is a paper - BSR & BHPR Guidelines for Management of GCA, which gives lots of details including tapering regime etc. you can probably get link from this site, or Arthtitis UK, or just type into google. The only thing I would say is don't try and reduce too quickly, your eyesight is at risk, and, as many other people on this site will testify, once you've lost the sight of one there's no going back. So take it steady, frustrating as it is. Take care, keep in contact, this site is good for morale, as well as all sorts of advice you never knew you wanted! Dorset Lady

[bluespot]

Hi Dorset Lady.

Lovely to hear from you never fear I'll be guided by my doctor on when to reduce, I'm very aware on the risk to my eyes so careful, careful from me. He was very quick on suspecting that I had GCA. The last time I visited he said the the hospital that carried out the biopsy should have recommend treatment/dosage, they didn't, so he intended to get back to them and find out why I'll be seeing him next week. Apart from a few sharp jabs from time to time, mainly in the legs I feel fine. I'll get hold of the paper you mentioned.

Cheers blue spot

[jinasc]

Dorset Lady

If you visit pmr-gca-northeast.org.uk you can read up, under Our Stories people's experiences with GCA.

Also the BSR Guidelines on treatment and diagnosis of both GCA & PMR are on that site and they are available to download.

Good Luck on this journey none of us wanted to take.

[bluespot in reply to jinasc]

Thanks for the pointer I'll pay them a visit. I've already downloaded the BSR & BHPR Guidelines for Management of GCA suggested by Dorset Lady and I also came across another pdf file, "Giant-cell arteritis-concise-guidlines" now I need to print them out.

Thanks, blue spot