What Next?

[lindyloy]

I went to see the Rheum. a week ago after having a PET/CT scan in June. he said there was no added inflammation. but my bloods were still elevated. They are treating me for GCA. although he says I am an A-TYPICAL case, I have been on steroids for 9mths. and am still on 20mgs. per day. I have lowered 4 times and had to up them back. the lowest dose was 15 mgs. I have now been on 20mgs. for 9 weeks and have never felt as well. My bloods were taken last time I went and I have received a letter telling me that although the elevation has gone down, they are still not back to "normal" I need to carry on the 20mgs. till I see him again, which is in 7 weeks. I am not unduly perturbed as I feel fine and am grateful for that, I just wonder where next as my blood levels don't seem to stay down for long?

[suzy1959]

After 4.5 years, my blood levels have never gone back down to normal. I have found it is much better to rely on symptoms especially as I have had countless flares- blood tests never prevented those so I have stopped having them done! I have also found that I have way fewer flares when I do the very slow reduction, but I have to say, I still really don't seem to be able to get much below 9 or 10mgs so far, which is disappointing and frustrating.

[Caro12line]

Hi... I have GCA... My bloods are always above "normal". My Rheumy goes by a different scale which is "normal for me". My CRP is around 10 and my WBC 15. Probably because of underlying RA. So if you feel good and PETCT was ok.. I would suggest the higher blood markers are your "normal for me". I would discuss with your Rheumy or GP

[PMRpro Ambassador]

I agree with Suzy and Caroline. I know another lady with higher CRP which concerned her GP - she then had a scan that showed no GCA and they agreed she'd try reducing further. Eventually she got off pred with no problems. She is quite a tall lady and had put on a LOT of pred weight - and that had contributed to her having a high CRP - but normal for her.

What is atypical in his view? It's something that always intrigues me - as most of the so-called atypical patients sound like most of the others! If half of patients are "atypical" - doesn't that suggest they aren't? If you see what I mean...

[lindyloy]

Before I went on the Pred. I developed a few of the symptoms of GCA (aching jaw when chewing, swollen arteries in temples, eye disturbances, pain in arm when lifting aching muscles etc. I had an examination by a different Rheum. at a different Hospital (she prescribed the steroids two days before) who then said because I could lift my arm above my head, I hadn't had tenderness in the swollen arteries, and the claudation was in my jaw when it is nearly always in the cheek and my aches and pains had disappeared almost overnight, she didn't think I had GCA. I think this is what my Rheum. now by an A-Typical case, I had already been treated for what I now know they thought was PMR. I had been on Naproxin forsix months by then. My GP told me before Christmas that one of my blood readings was 121, when it should have been 1 which sent me into panic mode, then in March this year after lowering the dosage by the Rheum. instructions, I said I was concerned about my blood readings if they were still high. He then told me they had come right down and a reduction was o.k. I always blame myself for not asking enough questions.