GCA temple pain getting worse again

[maisydaisy58]

Hi All, first time posting so here goes -Diagnosed with GCA in November 2022, put on 60mg prednisolone, symptoms stabilised quite quickly, but felt unwell taking steroids, had so many side effects, consultant put me on tocilizumab about 5 months ago and was told to taper /reduce prednisolone slowly as per there tapering regime, was on 35mg at that point now down to 1mg on my last week of prednisolone, but over the last few months have felt increasingly unwell, fatigue, joint pain , generally feeling sick, temple and jaw pain increasing every week, bloods done regularly but no raised markers, consultant said to contact my doctor as not GCA flare, went to doctor yesterday she said it may be arthritis and took more bloods, but I'm really concerned about the temple and jaw pain and not sure what to do, feeling pretty low and alone with this at the mo, thanks for reading

[PMRpro Ambassador]

"consultant said to contact my doctor as not GCA flare"

They are wrong. It very probably is. Another one who hasn't read the study documentation. Tocilizumab gets about half of patients off pred entirely. The other half require a low dose of pred, about 8-10mg seems common, because there are at least 3 different mechanisms that contribute to the inflammation in GCA, Tocilizumab only works for one of them, the IL-6 component. If your GCA involves either of the other 2, you will require some pred to manage that inflammation.

There were flares in the clinical trial amongst patients on tocilizumab - so why can't YOU have a flare?

ncbi.nlm.nih.gov/books/NBK5....

I'm afraid I don't know how you get round this though. Other than a private consult with a sensible rheumy - not just any one ...

[maisydaisy58 in reply to PMRpro]

Thanks for your reply, I will phone my doctor tomorrow & see if they wil contact my rheumatologist again

[DorsetLady PMRGCAuk volunteer]

Certainly sounds like a GCA flare to me…. the fatigue and feeling sick may be adrenal related, but the rest is typically GCA, despite the markers not being raised, but that is probably due to the TCZ.

Having had GCA and still have OA, I can day it’s not pain from OA. …and with or without TCZ, as you were diagnosed less than a year ago, your GCA is still very active. Any Rheumy worth their salt should know that… and left unrelated they could be endangering your sight.

As PMRpro says, any possibility getting a private appointment with a Rheumy?

[maisydaisy58 in reply to DorsetLady]

Thanks for your reply, I'm not sure how to find a private rheumatologist, but I definitely like the idea of getting another opinion as I can't go on like this, will do a Google search in the morning to see what I can find, how urgent is it that I increase my prednisolone? Do you think I should increase it myself?

[DorsetLady PMRGCAuk volunteer in reply to maisydaisy58]

Do you live in UK? Guess so as you mention Prednisolone and GP….you could raise a new post asking for recommendations-stating roughly where you live and how far you are prepared to travel…

..and yes I’d be inclined to take extra Pred until you get a response from GP and/or Rheumy… in fact it might be sensible to ring NHS 111 and get advice tonight [tell them your exact symptoms] ….then you can report to GP in the morning. If you have problems getting through then do you have enough to take 20mg now, and see how you are in morning…. A few days at a higher dose won’t cause an issue, you can easily drop back down.

[maisydaisy58 in reply to DorsetLady]

Yes I think I have enough to take 20mg for a couple of days anyway, will phone NHS 111 tonight and see what they say, thanks for taking the time to help me out

[DorsetLady PMRGCAuk volunteer in reply to maisydaisy58]

No probs- let us know how you get on please.

[PMRpro Ambassador in reply to maisydaisy58]

Where are you? It needs to be a rheumy who knows their stuff, you already have one who doesn't ..

[Exflex]

Sounds like Russian roulette to me, what a dreadful statement from the consultant. 111 should direct you to A&E.

[Sharitone]

Your GP should be able to refer you to a private one. (S)he should also be able to give a rough idea of whether other patients have fond them to be good. There are review sites online as well.

[PMRpro Ambassador in reply to Sharitone]

Doesn't mean they "get" PMR - they are all OK for RA, that is pretty standard. But many think PMR is beneath them and not a "real" illness

[Sharitone in reply to PMRpro]

I struck lucky last week with a private consultant that other patients had told the GP was good. He told me he is involved in a study with Sarah Mackie. And he didn't assume that I had left school when I was 6, nor that when I became a patient, my little grey cells all vanished overnight. Wonderful!

[PMRpro Ambassador in reply to Sharitone]

Who is that? Anyone working with Sarah like that should be "safe" though she does have colleagues at the same hospital of whom I wouldn't necessarily say the same!

[Sharitone in reply to PMRpro]

Dr Chris Holroyd, Southampton.

He also said that I was very well informed, so Thanks to everyone here!