gca/pmr

[CavalierKC3]

further to recent chat. Have had blood tests & result from rheumatology is that my CRP is 1 so absolutely no signs of gca or PMR any different. I am now on 7 mg Prednisolone from 50 last august. They will not up my dose. Have had both knees & hips xrayed but no results back yet. The pain in my knees & hips some days is terrible I can barely walk. I don’t normally feel pain when sitting. I don’t find Gel that dr prescribed or cocodamol help much. Whatever could be wrong

[DorsetLady PMRGCAuk volunteer]

Whatever could be wrong

Much as we said in previous post, and I know what you have said about your Rheumy’s credentials ….but if painkillers and gel don’t help, most of us on here would say PMR grumbling and extra Pred required despite the CRP being low.

But as extra Pred doesn’t fit into his plan, then not a lot we can do to help- just feel sorry for the situation you find yourself in.

If not already, maybe ask go to refer you for X-rays in case it’s osteoarthritis- personally don’t think it is, but might be more ammunition to point towards PMR

[PMRpro Ambassador]

You will have to wait for the results of the x-rays. And if they show nothing - the GP needs to initiate some other tests. Have you tried more pred at any point to see if it helps - that would be a bit of evidence one way or the other.

[Sharitone]

I am in a similar position to you. Low inflammation markers. I took some pred unauthorised by rheumy, and the relief was enormous. I did come clean to my GP, and it was useful to be able to tell him that a good dose of pred had made a big difference.

I'm not giving you advice, just hinting at a possible strategy...

It's a difficult position to be in, though, and I do not know how I will square it with the rheumy. On GP's advice, I am also getting a second (private) opinion. I don't know how else to deal with it.

But I am not putting up with that level of pain unnecessarily!!

[CavalierKC3 in reply to Sharitone]

Rheumatologist tells me Prednisolone will stop all pain/inflammation. But the idea is not to be on steroids for any length of time

[DorsetLady PMRGCAuk volunteer in reply to CavalierKC3]

But the idea is not to be on steroids for any length of time

Trouble with that idea is that nobody know how long your PMR will be active…. No one ‘wants’ to be on Pred longer than is necessary - but for some people it can longer than doctors think.…

[PMRpro Ambassador in reply to CavalierKC3]

"But the idea is not to be on steroids for any length of time"

Yeah, well, has he told the PMR that? He is wrong - the idea is to be at the LOWEST EFFECTIVE DOSE at any given point but the time is not defined. You need pred as long as the underlying cause of the PMR, an autoimmune disorder, is active and attacking your body. For half of patients that is likely to be more than about 6 years.

[Lyndaki]

My rheumatologist said once that he takes notice of patients’ symptoms & not just the blood results. He said while the CRP etc results can give an indication, physical symptoms were more important to notice.

[CavalierKC3 in reply to Lyndaki]

Pity I havnt got your rheumatologist

[Sophiestree in reply to CavalierKC3]

I agree with your GP, you need to find the right consultant. Often seeing one privately means they will take you on the NHS. If you tell people where you are in the country someone might be able to help you with where you could go.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Poster’s Rheumy is a “leading light” in GCA/PMR circles and has some definite views on tapering…

[Sophiestree in reply to DorsetLady]

Ha! That is even harder then. I'd still want to explore other avenues. Been around too many inflexible medics in my life to not take any notice.