GCA question for the pros.

[GivenUp24]

My rheumatologist never pays attention. I started out on 40 mg due to suspicion of GCA plus I know I have PMR. I’ve tapered down to 20.. and he said I could go to 15 since my CRP has been steady for 2 months. Although I told him I was having head pains and. Ear pain. Through this 3 year run I have never had scalp pain. Well now I do!! Do I go up on prednisone?? I can’t get him to answer me! I have an appointment at Johns Hopkins on the 12 th. I hope they listen to me, nobody else has?

[Angelsmummy]

I know what I would and pretty sure DL or others will say the same when they log in.Trust your own gut feeling.Maybe stress ,tension?I have GCA and get an awful lot of head,ear,neck pains,mixture of skeletal problems and constant stress with family issues.Good luck to you .xx😜🎄

[DorsetLady PMRGCAuk volunteer]

You need proper examination/advice - and probably extra Pred… and if anything gets worse before your scheduled appointment then a trip to ED.

Do you know you’ve posted this twice?

[GivenUp24 in reply to DorsetLady]

I updated my phone and it does weird things now.

if I could actually get my rheumatologist to answer my questions or return my calls…. It’s frustrating.

[DorsetLady PMRGCAuk volunteer in reply to GivenUp24]

Very frustrating-phone and Rheumy! 😳

[PMRpro Ambassador]

Here's what I said on the other thread for completeness

I wonder which bit of your CRP is normal because you are still on enough pred poses the problem!!! Why on earth assume a 25% change in dose will still be OK, especially in PMR.

As DL says - you need an examination/medical advice and enough pred. Had you dropped to 15 before the pain appeared?

[GivenUp24 in reply to PMRpro]

I can’t ever get below 20 without some head pains and other symptoms, but he just ignores me when I tell him that. I get my blood tested every two weeks my CRP was 15 last time, but he said because I had three blood tests that were similar in a row that I was stable and I could reduce to 15 even with the symptoms?

[PMRpro Ambassador in reply to GivenUp24]

A CRP of 15 is raised, even if he thinks it is stable. What it might show is that the current dose is barely enough to manage the current level of disease activity - it isn't getting worse. Our rule is no taper if you have symptoms because the CRP can lag behind, by some weeks sometimes. And no taper should be more than 10% of the current dose - not a randome figure plucked out of thin air but a recommendation from expert endocrinologists.

I think I'd be asking for a new rheumy because this isn't a good relationship - the patient must be heard and included in the management.

[GivenUp24 in reply to PMRpro]

that’s what I’m going to John Hopkins… hopefully I will get somewhere there..🫤

[PMRpro Ambassador in reply to GivenUp24]

Do hope so.

[GivenUp24 in reply to PMRpro]

Ty so very much!