scan for GCA

[CavalierKC3]

hello, Dr Muktyar did my scan to day & said no signs of GCA return, so stop the steroids. When I asked about CRP raised slightly & ESR gone from 19-38 he said those readings he doesn’t bother with, as any little thing going on can raise them. At some point they might do some tests to see if all the stiffness etc is anything to do with arthritis. So I must carry on regardless

[DorsetLady PMRGCAuk volunteer]

Hi,

Well good news and bad news…no GCA, but no answer to ongoing pain. So where does that leave you - “at some point they might do tests..”really isn’t very helpful.

He is correct in that CRP & ESR can be caused by other things… but until they know what you do need something to ease pain.

Sorry to hear you seem to be back at square one… and back to GP presumably..

[CavalierKC3 in reply to DorsetLady]

no, my GP doesn’t really get involved. Said it was all due to wear & tear normal at 79 years old. Mild painkillers & exercise

[Woodiesmum]

please get checked for PMR that will cause raised numbers and also causes stiffness and pain x I don’t understand why they seem to go together but I have it over 10yrs in steriods but have to stay on for life now x

[CavalierKC3 in reply to Woodiesmum]

Sadly, I have been told repeatedly I don’t have PMR. If you don’t seem to have every single symptom told you DO NOT HAVE it

[Woodiesmum in reply to CavalierKC3]

You don’t need every symptom x You h this makes me angry

That’s why I am a mess

At 40 I had gca but oh no can’t possibly have it you are far too young

Had to fight till I found a rheumatologist who believed me and started steriods straight away

But after 10 months of high steriods they did the Doppler scan and still there x so now I am damaged and have to stay on steriods for life x I did write and told the doctor who didn’t believe me x to never treat a patient like that again. Don’t give up

[PMRpro Ambassador]

Yeah well - you know my views ...

[Grammy80]

WHAT? And now what....? Do you have any upcoming appointments?

I love my doctors here in the States, but if there is one thing I learned recently, it is go by symptoms. My CRP and ESR were normal on July 29 when I went to the ER with GCA symptoms and received 75mg Solumedral IV, stayed overnight, and was discharged on the 30th, with improved headache and occasional jaw pain. By Wednesday not so much pain, I took the 60 mg from my discharge script also on Thursday, saw rheumy on Friday. By the next week, I'd suffered damage only revealed by the neuro-opthalmologist who sent me immediately to an infusion center, three days of 1250mg pred IV per day. And now on 60mg.

A few years back, I wrote to Dr. Muktyar because of research he was doing...and heaven knows, like many with GCA, I appreciated his research....but......

Please seek an additional opinion...I'm not saying it is GCA....but it is something.Be well💞

[SnazzyD]

So ultrasound can’t see anything but that will be where he was looking or even able to look. Doesn’t mean to say there isn’t anything elsewhere surely. Raised markers can be any little thing, that’s one of the problems, but surely that isn’t a reason to ignore it. Sounds a bit blasé to me. Are you able to pay for a second opinion elsewhere??

[marionofnorwich]

Sounds as though you are in Norwich. Can you see if you can get transferred to Max Yates? He works in the office next door and has a different approach. I had the heads up and managed to get referred to him from the outset