I was almost there

[Gran6]

Hi everyone not been on here for a long time as I have been doing really well until now,I have had GCA for nearly two years and have been slowly reducing my steriods and in May was on 5mgs had my bloods done regularly and had appointment at the end of May to see my consultant and my ESR had risen from 8 to 38 so he upped my steriods to 7 mg and told me to reduce 1mg as before and that he would see me in October.I saw my GP last Monday and I told him I was now on 6mgs but needed to know if my inflammatory marker was going down before I reduced any more ,I got the result to day and it had gone up to 44.I have been feeling so well could there be inflammation some where else not related to GCA I am wondering.I have phoned the Consultant am awaiting his reply to what I do next feeling a bit fed up as I thought I was almost in remission. Thanks

[DorsetLady PMRGCAuk volunteer]

If you don’t have any symptoms then it does sound as if your ESR could be raised by something else other than your GCA. Have you had a cold or virus recently for example?

It happened to me, and it was down to stress - I had no symptoms either.

Don’t get too excited about being in remission yet, 2 years is the minimum- very often longer!

[Gran6 in reply to DorsetLady]

Thank you Dorsetlady ,I did have a bad throat in April so I thought it could be still in my system when I had my blood test in May but I was shocked that it has risen even more last week. I will await a phone call tomorrow from the Consultant and again thank you

[piglette]

I was told to take into account how I feel not what my inflammation markers say. If I feel well and the markers are high I ignore them. In fact I do seem to have very high markers for some unknown reason, latest CRP was 80 and ESR 102. Goodness knows why. If I ache I stop reducing and if really bad increase the pred up to where I last felt well. Otherwise I just carry on reducing.

[Gran6 in reply to piglette]

Thanks piglette the you are right it is how you feel and not the numbers

[SheffieldJane]

I think you would know if GCA symptoms were creeping back. As I understand it, all manner of infections/ viruses can cause this rise in inflammatory markers. You have done so well and you are feeling good, all is not lost. You do however need qualified medical advice for this bit. Everything crossed for you. 6 mgs is not a bad dose to be stuck at, as PMRPro says, it’s not a race to zero.

[Gran6 in reply to SheffieldJane]

Thanks

[Hindags]

When after four months on Pred, down from 20 to 14, my markers went up, my Rheumy did two things: raised me back to 20 for a short time reducing back to 14 over the next month, and did a lot of blood tests to see if there was anything else she could identify that could be causing the rise in markers. I didn’t think I needed to go up, but did feel better. Nothing else turned up in my blood tests, thankfully.

[Gran6 in reply to Hindags]

Thanks

[PMRpro Ambassador]

It isn't over until the fat lady sings - and that doesn't happen until you get to zero with no return of inflammation and stick there for a few months!

Your rheumy wasn't thorough enough. The bloods needed checking on 7mg until they were stable AND BACK TO A LOW LEVEL AS BEFORE. Then, and only then, should you have attempted the reduction. If you don't have symptoms then maybe it is something else but the same applies - feeling unwell and/or raised markers means you mark time at the very least until all is back where it should be.

[Gran6 in reply to PMRpro]

Thank