gca/pmr/inflammatory arthritis. Who knows

[CavalierKC3]

well, finally had some blood tests. CRP now 3 ESR 37. Just been to rheumatologists who say the levels don’t tell them much, still adamant I don’t have PMR ( despite all the stiffness etc) want me start back on high dose of pred 50 mg, lanzaprole etc & will get ultrasound done in case GCA is on return. If I start to take this amount & GCA is not found I presume I will have to taper down again over a long time. I just don’t know what to do, more fed up than ever

[DorsetLady PMRGCAuk volunteer]

Depends how long it takes to get confirmation - but if it’s not GCA you should be able to reduce relatively easily so long as not too quick and puts you at risk.

[PMRpro Ambassador]

WHY isn't it PMR?

But as DL says - you will taper quickly if it isn't GCA. You can go at speed down to 10 or even less if it isn't GCA and then it depends a bit on how long you've been on the higher doses.

Though of course, "mild" GCA can be expressed as PMR depending on where is affected,

[CavalierKC3 in reply to PMRpro]

rheumatologists at norwich have always been adamant it’s not PMR because I don’t have every symptom

[PMRpro Ambassador in reply to CavalierKC3]

That'll be Mr Mukythar (or however it is spelled) I assume? Yes, he has some very strange ideas,

[CavalierKC3 in reply to PMRpro]

It sure is him.

[Sophiestree in reply to PMRpro]

I'm always amazed by how different people in the same department are. Isn't this the same hospital as Max Yates who seems to be one of the good guys??

[CavalierKC3 in reply to Sophiestree]

It is yes, I have seen him, but even he says I don’t have PMR even though I have stiff neck, low back, buttock, leg pain & stiffness. Also fingers now are stiff first thing in morning. CRP is 3. ESR 38 so now told to start 50 mg prednisolone with 100 week taper. I just finished a 100 week plan end of May & they suspect it’s back again. Now waiting for ultrasound to confirm diagnosis. I am very fed up, baffled etc. that’s the last thing I wanted another dose of pred considering all the problems I had with taking it. I consider my symptoms are PMR but not according to the rheumatologists. It might be some type of arthritis but first must go down the GCA route again

[Sophiestree in reply to CavalierKC3]

Oh dear. But if they don't think it is PMR why are they giving you steroids? Let's hope the ultrasound gives you some anwers.

[CavalierKC3 in reply to Sophiestree]

Because they think the GCA has returned. Just heard ultrasound is Friday morning

[PMRpro Ambassador in reply to CavalierKC3]

With PMR symptoms then - it is a spectrum and you can have both manifestations. Where is the problem? Does pred work?

[Sophiestree in reply to CavalierKC3]

Ah I see, so at least they are being sensible.

[PMRpro Ambassador in reply to Sophiestree]

It is indeed, Luck of the draw ...

[Sophiestree in reply to PMRpro]

So frustrating.....

[AtopicGuy in reply to PMRpro]

Sounds like Classification Criteria are being applied rather than Diagnostic Criteria. Mind you, by some definitions I've seen, DCs consist of a list of symptoms that all cases must have!

[Grammy80]

Symptoms...I'm all about our symptoms. Hopefully, answers and relief come soon. Trust the way YOU feel.💞

[arvine]

i understood GCA symptons were pain in temples, eyesight blurrinedd inflammation arteries in head, do yo have or did you have those symptons

[CavalierKC3 in reply to arvine]

no, my symptoms that took me to GP were earache & jawache

[arvine]

oh yes that s right have read about jaw, well hope you get relief and feel better