New GCA treatment

[DogAgilityObsessed]

Three years since I read everything about PMR and now revisiting everything. Scary.

48 hours since treatment started (60mg) and headaches almost gone and most jaw pain / difficulty gone. Except husband cooked Brussels sprouts which I struggled to eat (usually lovely then).

Question: I know steroids can improve PMR fast and is a final confirmation in diagnosis. Is the effect similar for GCA or would the steroids ease my symptoms if caused by something else?

[PMRpro Ambassador]

All depends what was causing it - but I'd say that was a bit of confirmation this could well be GCA.

I had a lovely recipe for sprouts - blanch, poach in Riesling wine until soft enough to mash. Serve with lots of black pepper and toasted almonds.

[DogAgilityObsessed in reply to PMRpro]

Sounds a good recipe. I drank the wine though and had the almonds on my yogurt for breakfast.

[Lenore58 in reply to DogAgilityObsessed]

😂 Glad you have retained good humor!

[SheffieldJane in reply to PMRpro]

I am going to try that, it sounds gorgeous even in 31 degrees.

[DorsetLady PMRGCAuk volunteer]

High doses for GCA mask almost all pain… but as we’ve said what you describe does sounds very GCA ish.

If not GCA -then what do you think you have ?

[DogAgilityObsessed in reply to DorsetLady]

I think it must be GCA from my limited knowledge. But I do really don’t want it to be (I’ve avoided type 2, lost over three stone and am working hard to get some fitness back). I was stressed enough with just the incredible tiredness making me think adrenal glands not working. But at the other extremes my mind thinks the doctors will say tumour or just my imagination and I guess I’m scared they’ll just take me off pred and I’ll end up blind. However I know somethings wrong I know. Sorry rambling.

[PMRpro Ambassador in reply to DogAgilityObsessed]

No you aren't - anyone would need to sort it all out.

[Plains in reply to DogAgilityObsessed]

I feel for you, as I have thought the same things. You may not have to be on a high dose for a long time. Hopefully your doctor can prescribe Actemera. This may allow you to go down in steroid use. Hang in there!

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Not as easy to prescribe Actemra in UK as it is in US…

[CarolF1312 in reply to DogAgilityObsessed]

I can imagine how difficult this must be after long battle with PMR. Hang on in there, you'll get through this 🤗

[SheffieldJane]

I’m just glad you are safe. It is an awful blow. It happened to me too. I was only on the very high doses for a few weeks and Tocilizumab helped me to get down again. Courage!!