Relapse of GCA and GP reaction.

[Arnhem]

Rheumatologist signed me back to GP in June, after 3 years, and now believe a relapse of GCA has occurred.. very tender right temple with more numbness than too much pain and tender scalp. GP put me on 30mg Prednisolone for 4 weeks and extended it by another 2. Due to speak to him (phone appt 5th Sept) Not touched the temple pain in fact more tender.Tempted to up my dose to 50mg for a week (I have some from last taper) and try to speak to a GP Tuesday to get referral back to Rheumatology.

No problem sleeping but when awake all comes back.

Really don't want to go back to A&E again.

Ended up there 4 weeks ago with this head numbness and Head CT revealed nothing 'sinister'. Consultant there put it down to neck instability but didn't really understand about GCA.

Been to physio and he recommended MRI, but that's something our GP is not in favour of as getting GP referral is difficult...normally go through Specialist 1st here in Bucks.

Anyone had anything similar ?

[PMRpro Ambassador]

What is the GP messing at? If he thinks it is a flare of GCA (presumably he does if he upped the dose) then he should be seeking an urgent consultation with the rheumy.

Oh of course - it is the BH isn't it!!! And the consultant strike ...

[Arnhem in reply to PMRpro]

Thank you... If you see my reply to Dorset Lady that will explain a bit better. GP is hopeless, problem when they only work 3 days a week, and you never get the same one twice, unless a planned call 2 weeks time....and your right...BH and Consultants strike.111 were sympathetic but realistic in the 'perceived urgency'...

[DorsetLady PMRGCAuk volunteer]

Are these the same pains and in same area as you had prior to diagnosis? Noticed you had replacement hip earlier this year and also posted about stomach/chest pains recently on another forum… have those resolved?

Would have expected that a return to 30mg for a period of 6 weeks [or even 4] should have made a difference if it were just GCA…. But you could try 50mg for a couple of weeks and then drop back to 30mg before speaking to GP.

But I think I might be ringing NHS 111 for advice as it’s weekend…..

[Arnhem in reply to DorsetLady]

Hello again and thank you.Pains are exactly the same area as original, and biopsy place. Being 2020 originally and on 65/60mg for so long, I'd almost forgotten how bad they were!.

Would you believe hip is perfect (opposite side) and ended up with Pacemaker on June 21st this year, as heart was affected by AF / brachicardia which they also put down to GCA.

That cured the abdominal/ chest issues, now just this rubbish again.

Issue will be need more Pred next week if I use my 'supply'.

I just spoke to 111 as my daughter suggested a call too.....explained everything and the 'clinician' suggested using mine until Tuesday as with shortage of consultants there is a long wait at local A&E (approx 9 hours today) then contact GP and or Rheumatology helpline.

If it gets worse call again !.but they really are only giving basic services.

One good thing is the local hospital Monday to Friday do a GP stream in A&E precisely because people can't get to see their own. 6 doctors assigned to that, so I would go there next week if mine are no good.

[DorsetLady PMRGCAuk volunteer in reply to Arnhem]

Glad you got through to 111- and good advice. ..hope extra helps - and convinces Rheumy Dept you need their services (if you want that of course).

[Arnhem in reply to DorsetLady]

Thank you yes I do...the Rheumatologist was the only one who was tuned in...

[PMRpro Ambassador in reply to Arnhem]

Dunno - I'd have said 9 hours was about par for the course these days!!!!

[Arnhem in reply to PMRpro]

Unfortunately true....last time I was there walking to the CT scanner there were 20 trollies with patients in corridors.....the other odd thing is one of the 2 x MRI scanners shuts daily at 5pm causing even longer waits.....its like something you see in an overseas news report from a third world country.....but the front line staff were good...waiting hours for results of tests etc to be able to take the next step....no idea what the answer is though......frightening

[DorsetLady PMRGCAuk volunteer in reply to Arnhem]

MRI scanners -think the issue is lack of trained personnel… seems to be national issue..

[PMRpro Ambassador in reply to Arnhem]

Shortage of staff in all departments - been bad since 2010 and getting worse.

[Bcol]

Nothing sensible I can to the comments already made by DL, PMRpro AND 111. The availibility and speed of access to MRI's and other services, including doctors seems to be very much a post code lottery at the moment, fine/good in some areas and not so good/poor in others.

[Arnhem in reply to Bcol]

Absolutely.

[Ridge]

It’s like the third world! I’m so sorry. You are being very brave.