GCA diagnosed last February. Biopsy tested positive. No typical symptoms of GCA,2021 just jaw pain at night but I have had PMR since 2021

[Vikinga]

GCA diagnosed last February. Put on 60mg Prednisone/day for a month. CRP was 67.7 before 60 mg and came down to 12.6 after the treatment. ESR was not an issue.Because CRP is 12.6 should i continue taking 60 mg/day prednisone? My Rheumy is away for 10 days Your advise would be greatly appreciated!

[DorsetLady PMRGCAuk volunteer]

Don’t think we can say whether you still need to be on 60mg.

That’s a decision your medical team need to make…and did your Rheumy not give you a tapering plan? If not, then that’s extremely remiss of them… and they should have a secretary or deputy you can contact.

60mg is a high dose, and not one that a patient or anyone without your full history should be making decisions on.

Please seek medical advice.

[Vikinga in reply to DorsetLady]

Thank you so much Dorset Lady. for your prompt reply The rheumy gave me a tapering plan indicating to reduce the 60 mg after a month to 55 for a week, then to 50 for a week, 45 for a week and so on. I assume he thought the CRP was going to be in the normal range but the CRP had not decreased to the normal range, something it never crossed his mind. He seems knowledgeable in theory but it looks like I am the only patient he has had with GCA. When I phoned him yesterday, his office was closed. and a message indicating he is away and to phone back in 10 days. I took 60mg yesterday and today. I am afraid of a relapse. I never had headaches, scalp tenderness or vision problems, just the jaw pain. I have read that GCA relapses usually occur at lower doses of prednisone.

I was managing PMR following your slow tapering plan without problems. I was ready to start 4.5mg of prednisone when the jaw pain started and with it GCA made its appearance. GCA is a nasty, tricky disease . I admire your knowledge Dorset Lady. I will find out if the Emergency Dept has a Rheumy I could contact.

My GP told me he only heard once about GCA when he was in medical school!

Sincerely, VIKINGA

[DorsetLady PMRGCAuk volunteer in reply to Vikinga]

Just to give you a bit of perspective- my CRP pre diagnosis was 25.2… and after 2 weeks at 80mg it dropped to 11.2 and after another 8 weeks at 60mg was down to 5.6.

So although at 12.6 yours is a bit on the high side, it’s not dramatically so.

Maybe stay at 60mg until you can contact Rheumy department- as I said you do need medical clarification.

As for taper he has suggested, a week at each dose is not really enough… you need at least 2 weeks to know current dose is sufficient before you reduce, even when it’s only 5mg a time…

Please let us know if you get through to anyone…

[Vikinga in reply to DorsetLady]

For sure Dorset Lady I will let you know if I could contact a rheumy to have a better idea of hat I should be doing

Thank you again,

VIKINGA

[PMRpro Ambassador]

I think expecting CRP to be down to normal after a month is hopeful rather than a certainty. I also think reducing to 55mg is a reasonable action - but would be better to stay at it for 2 weeks by which time he will be back. 55mg is still a good dose for this stage of GCA, But you really need a medical opinion.

[Vikinga in reply to PMRpro]

I was able to contact a GP with experience on PMR but not on GCA. He agreed with Dorset Lady and PMRpro: My expectation to reduce CRP to normal after a month taking 60mg pred was unrealistic. In his opinion, with GCA, CRP takes more time to respond than with PMRA.

In 2022 when I had a PMR relapse wit very high ESR and CRP, a 20 mg pred for a month was enough to have both blood markers back to normal.

The GP advised me to continue with 60mg pred/day until my Rheumy is back.

A big thank you to Dorset Lady and PMR pro. Your advise is always appreciated!

Vikinga

[Chiqui1950]

Dear Vikinga, So glad to hear that you have responded so well to the prednisone and that your ESR levels are normal. It could follow that the CRP should be lower too. It is curious to me that your CRP is 12.6, exactly the same as your ESR-- coincidence? also in my experience the ESR is always given in whole numbers. In my case, there has been significant mistakes on my test results twice, so you may find out if you can retest the CRP. Yes finding a Rheumy at the Emergency department seems important now. Good luck.

[Vikinga in reply to Chiqui1950]

Clarification: My ESR was within the normal range before and after taking the 60mg pred.

12,6 was the CRP after the 60mg of pred, not the ESR as you mention

Vikinga