Now I’m told it might be Palindromic Rheumatism

[Devedaaee]

I...

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear that, so does that mean you’ll be on MTX?

Have a look at this if you haven’t already -

versusarthritis.org/about-a...

[Devedaaee in reply to DorsetLady]

Thank you. I haven’t got a diagnosis yet, and it’s not clear that I will get one, so I’ve yet to find out. That could be sooner or later. In the meantime I am not on medication because I am considered not highly symptomatic. I do feel quite ill though, and all of this could change, so I don’t really know…

[DorsetLady PMRGCAuk volunteer in reply to Devedaaee]

Ok. Let’s us know when you know!

[Devedaaee in reply to DorsetLady]

I'll be the last to know, I should think!

It's disconcerting, to say the least, to have the PMR diagnosis thrown into doubt, but I suppose I was expecting it. Now, what happened to my old life? It must be around here somewhere...

[DorsetLady PMRGCAuk volunteer in reply to Devedaaee]

You’ll find it again one day. Maybe not as soon as you’d like, but it’s still there!

[jinasc]

Worth looking at this link and

Palindromic rheumatism - Arthritis Research UK

arthritisresearchuk.org/~/.......

When you get there click on the link:

What’s inside?

This is an interactive table of contents. Simply click a title to go directly to the page.

Yes, it is a long read, but well worth it.

Wishing you well and remember knowledge is power.

[Devedaaee in reply to jinasc]

Thank you for the link. Looks like I’ve got my reading cut out for me.

[OutdoorsyGal in reply to jinasc]

A more direct link, I hope.

versusarthritis.org/about-a...

[jinasc in reply to OutdoorsyGal]

Thank you.

[PMRpro Ambassador]

Who suggested it? I suppose that at least it tends to go away between episodes - but you don't know when they will happen ...

[Devedaaee in reply to PMRpro]

Thanks for asking. It was suggested by my NHS rheumatologist, based on my reporting of symptoms. Too long a story to tell (I’m tied up at work!). I’ll say more as and when more unfolds.

[Devedaaee in reply to PMRpro]

What I will say is that accounts of PR are pretty sparse and don’t make much sense. Either it is quite unlike RA (and like PMR causes no lasting damage) or it is the sub clinical precursor to RA. My only real takeaway is that the consultant sniffed out a potential problem with the PMR diagnosis, and I am grateful for that - if a bit adrift.

[Hidden in reply to Devedaaee]

Perhaps you could have a look at this forum/site that has PR forum and details of symptoms and treatment. I didn't join as it was just research. The forum details are at right at the bottom of the page.

patientslikeme.com/conditio...

[Devedaaee in reply to Hidden]

Thank you. I’ll take a look. I’m starting to feel a bit homeless though…

[Hidden in reply to Devedaaee]

There's a big forum attached but no idea what it's like.

[Devedaaee in reply to Hidden]

It’s a general Chronic Pain forum. Might take a lot of trawling through.

[Hidden in reply to Devedaaee]

Yikes. As I say I didn't want to join another forum for research. Hopefully you may be able to get advice and info from a few sources and stitch them together.

[Hidden in reply to Hidden]

Maybe one of these two may help you. 🌻

palindromicrheumatism.org/i...

[Hidden in reply to Devedaaee]

patient.info/forums/discuss...

[Raven1955]

Just a personal observation (and thus should be taken with the proverbial grain of salt!) that it seems like many GP's are reluctant to diagnose PMR. Seems like they look for a diagnosis they can cure or one that is much more familiar. I am not suggesting that's the case for you. My second Rheumy spent 4 appointments and a bunch of my money trying to prove it was RA and acted totally frustrated when he had to surrender and agree with the original diagnosis of PMR. Rheumy #3 was going to show that PMR could be treated with something other than prednisone. Whatever your doctors diagnosis is, I hope it's on target and you don't have to keep wondering if it's correct or not.

[Devedaaee in reply to Raven1955]

A lot of educated guesswork involved...

[OutdoorsyGal in reply to Raven1955]

Is there EVER certainty with PMR?

[Devedaaee in reply to OutdoorsyGal]

True.

[Theziggy]

I was initially diagnosed with and was just glad to have my pain given a name. I was put on steroids (standard approach to PMR), however with some investigation, I and my GP now suspect it is Palindromic Rheumatism. A few experts on this forum also supported this supposition based on my symptoms. My Rheumy doesn't listen to me or my GP!!!

Whilst there is quite a good web based support system for PMR - PR is quite low, there is a Facebook group and a couple of web sites but that is all.

[Devedaaee in reply to Theziggy]

Thanks for this. PMR seems simple compared to this diagnostic middle ground.