Flare, hospital increase 12.5 - 15 - 20 now 30?

[HappyDiamonds]

I had to contact Hospital again on Monday as the increase in Pred to 20mg was still not doing the trick. A lovely Registrar called me back within 20 minutes and I asked if it was PMR as I have painful neck, shoulders, tops of arms wrists and thighs (not hip) and I'm walking awkwardly, bent over a little. She said her gut feeling was it was GCA in those areas as PMR would have been resolved with the amount of Pred i was taking. She put me up to 30mg for 2 weeks, dropping to 25 which will be a couple of days before my Consultant appointment. Meanwhile she emailed my GPs and requested bloods tests which I had yesterday morning. So I'm back where I was 6 months ago sadly but feeling a bit better today which is whats important. Ive always had neck problems since this started which is why GP treated me for trapped nerve for 6 months. Is this the norm with GCA to have shoulder pain etc? Does this mean I have GCA in larger blood vessels? Not quite sure I understand what is going on and why I was so well in January on 12.5mg and now need 30mg.

Would appreciate any wise words please.

[DorsetLady PMRGCAuk volunteer]

hi

Is this the norm with GCA to have shoulder pain etc? Does this mean I have GCA in larger blood vessels? Not quite sure I understand what is going on and why I was so well in January on 12.5mg and now need 30mg.

Yes it is normal to have shoulder pain with GCA - mine was originally diagnosed as frozen shoulder.

Doesn't necessarily mean you have GCA in larger vessels, can be just cranial - as most people's seem to be. Discuss with Rheumy at next appointment.

Why were you well in January, but not now?...well your GCA might have just surfaced... Doesn't always start at same time as PMR.

Well done that registrar, lets hope that 30mg is enough to give relief....you know after 2 weeks.

[HappyDiamonds in reply to DorsetLady]

Thanks Dorset Lady. I was diagnosed with GCA only May 2020 and thought that the recent shoulder pain was now PMR as well as I had reduced the Pred low enough for it to rear its head. I also had the head/face pain too which is easing thank goodness. I am being extremely well looked after but sometime you can't stop all sorts running through your mind

leading up to an appointment and then forget to mention it during a phone call.

[DorsetLady PMRGCAuk volunteer in reply to HappyDiamonds]

Okay, well in that case it's a reoccurrence (or flare) of GCA, obviously gone too low...at the moment anyway.

Hopefully the increase will solve it...

[HappyDiamonds in reply to DorsetLady]

Thank you. Yes I have asked and asked them to slow down but we all know how it is 🙄

[DorsetLady PMRGCAuk volunteer in reply to HappyDiamonds]

Well perhaps they’ll realise it is too fast...one can live in hope!

[PMRpro Ambassador]

If you have only had GCA for 10 months - it isn't unusual for it to flare up in the first 18 months to 2 years.

[HappyDiamonds in reply to PMRpro]

Thank you, I feel so disappointed but more reassured now. Just wish they had upped it more in the first place.

[PMRpro Ambassador in reply to HappyDiamonds]

Most people would be saying they didn't WANT it raised ...