Not GCA

[Chespoll]

HiThought I'd share what happened to me today.

Diagnosed GCA by Rheumatologist 3 weeks ago, started at 40mgs pred.

Did not have an immediate cessation of symptoms, and following advice from thus forum contacted the Rheumy helpline.

They kept me at 40mgs over the weekend, and then to wait for blood tests scheduled for today.

The specialist nurse rang this afternoon to say my bloods were really good, and as I had not had immediate relief from the preds, I have not got GCA.

Suggest I get in touch with GP about the ongoing headches.

And to continue with the Rheumatologists reduction plan, 3 weeks 40mg, 3 weeks 30mg, 3 weeks 20mg, 4 weeks 17.5mg, 4 weeks 15mg, 4 weeks 12.5mg, 4 weeks 10mg

Then 1mg per month to zero

Feeling a bit confused!

[DorsetLady PMRGCAuk volunteer]

The specialist nurse rang this afternoon to say my bloods were really good, and as I had not had immediate relief from the preds, I have not got GCA.

Not sure that’s 100% guaranteed - bloods should be good at 40mg, just shows inflammation [whatever caused] it is controlled … and not every one gets immediate relief even at 40mg. They may be right, but you won’t really be sure unless you can reduce okay again, and find another reason for your headaches.

Could you have done anything, however tenuous, to account for headache ?

Please make appointment with GP, preferably asap - and let us know how you go on.

[Chespoll in reply to DorsetLady]

Thanks for your reply, thats what I thought too.Had headaches for a couple of months now, and can't think of anything thats happened.

Will get in touch with GP tomorrow and start the reduction plan.

[sennetta in reply to Chespoll]

Have you substituted sugary foods/drinks with stuff containing aspartame? Side affects of ingesting aspartame include headaches. Might be worth looking at food labels and checking your sweeteners if you take them in beverages

[Chespoll in reply to sennetta]

Thank you, no I did'nt know. I dont drink sugary drinks but will start checking labels.

[Stills in reply to sennetta]

I have head ache issues and did not know about this either. I will be wary although never drink fizzy, canned or fruit type drinks but I bet I find it my cupboard in some thing! A good post thank you.

[PMRpro Ambassador in reply to Stills]

The only fizzy drinks I indulge in are mineral water or prosecco - sometimes mixed ...

[herdysheep in reply to PMRpro]

🍾

[Stills in reply to PMRpro]

When we visit Lake como I have enjoy Aperol and Prosecco but that’s only once a year sadly 🥂

[PMRpro Ambassador in reply to Stills]

Just had one this afternoon

[PMRpro Ambassador]

Not a given - pred only works immediately if you are on a high enough dose and some people may need as much as 60-80mg to get the inflammation down enough to stop the symptoms. Sometimes I do despair at the sweeping statements I hear from so-called experts ...

[Viveka]

I didn't get immediate relief from steroids, mainly because my symptoms were quite low and steroids knocked me off my feet. One rheumy decided I didn't have it and could quick taper eg every 2 weeks. However symptoms clearly emerged at 17.5mg. Something to watch out for, Chespoll.

Question for Pro and DL - assuming rheumy is right and Chespoll does not have GCA should they not be suggesting a faster taper? - this one is practically the standard model.

[PMRpro Ambassador in reply to Viveka]

I suspect the rheumy isn't as sure as the nurse that it isn't GCA!!! Maybe she thinks she is being reassuring.

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

Agree with PMRpro, and maybe Rheumy hedging his bets!

[Sharitone]

Humph. I had 40mg for4 days and it didn't do any good at all for the headache. But the next day I had 60mg, and that did make a dramatic difference.