is it GCA ?

[Rubha]

Diagnosed PMR Jan 2024. Pred at 20mg for 3 weeks . Headache and stiffness gone in a few days. Reduced to 15mg after 3 weeks then by 1mg each month and remained symptom free. Reached 12mg and mild headache returned. No visual symptoms. Following DL’s flare plan , I increased to 17mg for about 10 days with no change. Had a phone consult with GP (yet another one) who suggested increasing to original 20mg. 10 days and no change . Another phone consult with a more senior GP and increase Pred to 40mg. After a week I have noticed only very minor changes. 4 days ago I noticed new floaters in my eye so had an emergency consult with my optician. Had a very thorough eye examination with no red flags from that. I am beginning to ask myself if it is GCA. I know I have osteoarthritis in my jaws and in reading about TMJ , I wonder. Any advice would be grateful as I am confused and frustrated. If only we could see one GP ….but I know many of us are in the same boat. Thanks

[piglette]

I have found that I do tend to blame PMR for everything and sometimes panic and think I may be getting GCA. In fact it is usually nothing to do with PMR or GCA in the end. I have not had GCA, but others have told me you can get the worst headache in the world.

[Rubha in reply to piglette]

Thank you. I am frustrated that the 40grm of pred hasn’t worked …… apart from the insomnia . 3 am and I’m awake. I’m happy to follow advice. Good luck on your journey too.

[DorsetLady PMRGCAuk volunteer]

Hi,

Think you may need to see dentist if you think it’s jaw connected and maybe have a read at this -

healthline.com/health/can-y...

Can I ask what you mean by ‘minor changes’ when on 40mg?

Floaters in eye are relatively common, and as you have been to optometrist and have all clear maybe that’s just coincidence- but obviously any further sight disturbances should be checked.

As piglette has said a GCA headache is like no others… much more severe and usually once there , stays.

How long are you supposed to stay at 40mg - and then what?

In answer to your question…. Not sure we can say, but it certainly requires further investigation - and if GP surgery isn’t providing that- that a call to NHS 111 or A&E is probably required.

Please keep us informed and fingers crossed it’s not GCA.

[Rubha in reply to DorsetLady]

Many thanks for your reply Dorset Lady ….much appreciated. I’d say my headache has eased a bit and nothing like the horrible headache in December , early January…..more *dull*. The GP said to stay on 40mg till headache disappeared then stay on 40 for another 2 weeks before reducing to 35mg. My dentists mentioned Jaw Arthritis two years ago and I have had episodes of clicking , pain and jaw locking (the latter only once). I think like all people with PMR/GCA , the idea of sight loss is terrifying, 3 out of 4 of my grandparents went blind.

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

Keep us informed please