Update

[Numptybrain]

I’m now down to 15mg and my stomach is still swollen but cause seems to be Serositis. My pleural effusion are 200/300mls left side and zero right side with now minimal around pericardial so steroids are definitely working indicating cause is definitely autoimmune and possibly PMR . I still don’t feel well but I’ve been told this will be a very long road back to reconditioning as I’ve had infection after infection and with Serositis going on as well it’s difficult. My eyes feel better with the gel and drops although still blurry. My only fear is , I finish steroids completely early May and don’t see rheumatologist until late June, what happens if all of the fluid returns?

[PMRpro Ambassador]

"steroids are definitely working indicating cause is definitely autoimmune and possibly PMR "

I don't think you can infer either of those conclusions from the fact pred is working. Pred is about the most powerful antiinflammatory medication available in its own right and used for all sorts of inflammation, not just that caused by autoimmune conditions. It has the advantage in autoimmune conditions that it may also suppress the autoimmune process as well but that isn't specific.

What you are asking about now really isn't necessarily linked to PMR and the use of pred for that - it is something for the doctors managing the pericarditis which I honestly doubt is due to PMR. if it is it is exceptionally rare. Pleural effusion is seen in lupus and RA patients - but they aren't the same as PMR. And coincidences do happen.

[Numptybrain in reply to PMRpro]

I think rheumatologist is blaming PMR for it . My CT scans are showing inflammation and although rare pleural/pericardial effusion can exist with PMR . My ANA is negative but all other bloods show inflammation, I don’t have swollen joints apart from my left ankle but I used to get swollen joints years ago, maybe now I’m more bone on bone with severe osteoarthritis and osteoporosis but rheumatologist ruled out lupus sle because of ANA and blood tests he had done only stated PMR . My prednisone tapers out early May and I don’t see rheumi till end June so really hoping fluid doesn’t rear it’s ugly head i between.

Hope this helps

Wendy xx

[PMRpro Ambassador in reply to Numptybrain]

Has he not considered an inflammatory arthritis since you say you have a history of swollen joints - and they are also unusual in RA. There are no blood tests that are specific to PMR - it is the worst thing we face, there are no definitive tests that can say yeah or nay to PMR, just a body of evidence, bricks in a wall that support it. What sort of CT did you have? Was it a PET-CT?

[Numptybrain in reply to PMRpro]

It’s always with contrast for my heart lungs. To be fair rheumatologist was very abrupt, rude and rushed my appointment as he was obviously in a hurry to get finished, I was his last appointment of the day and he did attend an MDT meeting about me so it wasn’t until he asked if we d had any fractures and I mentioned I had that his ears pricked, then he mentioned a Dexa scan to which I informed him I already had osteoporosis, he then ordered bloods including PMR and an X-ray with me laying down and an X-ray with me curled with my knees up(which was extremely uncomfortable), he didn’t explain why, he just told me to get them done and put me on 20mg prednisone for 3 weeks then 15 for 3 weeks and so on until it stops in may and I don’t see him till end May f June so I’m just hoping everything will be ok but I’m going to ring his secretary to find out what his plan is?

[PMRpro Ambassador in reply to Numptybrain]

CT with contrast is one thing, PET-CT is another and is as far as I know the only thing that will differentiate between general inflammation and the specific sites to show PMR as opposed to other things. The bloods are only general inflammatory markers - not only often raised in PMR but everything else you have going on will raise them too.

[Numptybrain in reply to PMRpro]

I’m confused, not sure what you are meaning sorry

[PMRpro Ambassador in reply to Numptybrain]

I asked what sort of CT you had - it requires a specific sort of CT to say it is PMR.

[Numptybrain in reply to PMRpro]

No Ct from r PMR I’m uk and I don’t think they do to be fair with NHS

[PMRpro Ambassador in reply to Numptybrain]

Yes they do. But it depends on the consultant realising it is going to tell them what they need to know.

[Numptybrain in reply to PMRpro]

He hasn’t arranged one or even mentioned one but he wants another ct lung with contrast from respiratory to see if there is improvement