I received my notes last night in the post and read with interest what the Rheumatologist stated, in particular the bit where he says "I suspect Palindromic Rheumatism..." though he has ordered further tests to entirely rule out RA.
PR often presents with negative bloods and transient swelling. In light of negative blood results, diagnosis i've read, is typically made based on reported symptoms & disability along with pictures taken by a patient during flares to show swelling and redness of joints. My GP has physically seen me during a flare, but the Rheumatologist has not, but did look at all the pictures i've taken.
Whilst i'm not totally relieved yet, I do feel like I might be a step closer.
I've read up on PR, but because it is rare there is very little information on it, however, what I have read, including an amazing piece of research by Arthritis Research UK, fits perfectly.
When does an "I suspect..." turn into a firm diagnosis? Perhaps this is as close to a diagnosis i'll get if all my tests for RA are negative? All questions for my GP on Monday I think!
Massive amounts of love going out to all of you lovely people who have been so supportive and helpful up to now xxx
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ShellyWelly
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Hello, you might like to read an article dated 4 August by Arthritis Research UK about 'devastating palindromic arthritis' (arthritisresearchuk.org). Also, when I was diagnosed about 4 years ago, my crp etc was normal but I had a raised blood plasma viscosity level which means inflammation. Have you had this test? Good luck, Virge
Thanks Virge, brilliant to hear about new research into the area, there is so very little that i've been able to find so far! I'll look out and ask about blood plasma viscosity levels.
Did you have very visible inflammation or 'just' the associated pain?
At first I just had swollen fingers which I still have along with constantly swollen ankles and feet, swollen elbows and wrists. Most of my joints can hurt and swell occasionally. Looking back I had RA symptoms for several years but I thought everybody had pain etc! Stupid or what! I eventually saw my GP when It was so bad I was crying every time I washed my hands and it felt like I was walking on a pebbled beach, even when I was sitting down. Like a lot if people I am sero negative, so please do not be fobbed off if you have 'normal' bloods. The following is from labsonline.org.uk - 'PV, ESR and C-reactive protein (CRP) are all markers of inflammation. Generally, PV and ESR do not change as rapidly as does CRP, either at the start of inflammation or as it goes away. CRP is not affected by as many other factors as the PV or ESR, making it a better marker of some types of inflammation. PV however is more sensitive and more specific than either ESR or CRP when monitoring the activity of rheumatoid arthritis.'
I really hope you get sorted soon, xx Virge
When I was in the same situation as you are in now I did think that mine might be Palindromic - and still do think that some of it is for me although this has never been mentioned at all by doctors. Eventually - after about 8 months it settled in my hands so that they weren't just stiff and painful - they appeared to be locking permanently but after 6 months on MTX with physio and an OT things improved and they are now back to normal again.
I'm wondering if it's just the diagnosis that's rare rather than the condition? After three years on arthritis forums I have noticed that a lot of people seem to start off this way and for some it fizzles back to where it came from, others it remains Palindromic (i.e non-erosive) and for others it turns into full blown RA. I recall hearing a doctor on one of the PR sites saying that this was a diagnosis of exclusion and was like RA with a faulty starter motor. So it either burns out or eventually becomes RA/ RD when the engine bites and starts running for real. So if yours is Palindromic then this could be quite hopeful I'm thinking?
Hi Twitchy, thanks for sharing your thoughts. Yes, that's what I am thinking too! From what i've read, it seems for some, it just fizzles out, for others it remains about the same and others go on to develop RA...if it is indeed PR then i've got my fingers crossed it just fizzles out and buggers off eventually!!
True, yes, could be diagnosis is rare rather than the condition. According to Arthritis Research UK it is 'rare' and there is still not much known about it, though a Dr in Leeds has just received funding for more research into it. Interesting that you heard it was a diagnosis of exclusion, so i'm guessing if everything else draws a blank the specialist will go along with it being PR.
And just something more for you to think about if you choose. This doctor you disliked so much - perhaps he isn't all bad? If he's getting you well checked out re bloods etc and he's considering PR then perhaps it is just his manner that is lousy but he may actually be a very skilled clinician in a Doc Martin kind of way?
It certainly seems like his diagnostic skills are nothing to complain about, absolutely - it would have helped massively if he'd communicated things during the appointment however, rather than me finding out from his letter back to my GP :/ Behaving in a cold and dismissive way is always going to cause distress in such a situation, easily avoided through simple communication! *sigh*
I know. It's always a dilemma though because ideally doctors would all have good people skills as well as being great doctors. But if pushed I would much rather have a doctor who is on the ball than one with people skills but indifferent skills as a medic. Both skills ideal of course!
How I read "suspect" is that until all tests ordered are completed & analysed this is his finding, based on his physical exam of you. This is no different to diagnosis of RD though in my case all tests were performed beforehand & only when all were on my Diagnostic Consultant's screen was it confirmed. Having said that my RF test result came back as 98 seropositive & add in the fact my GP was pretty convinced from her exam I was somewhat prepared for my RD diagnosis. It's an unfortunate & a little back to front way you've been seen as a first consultation with a Rheumy.
FYI ideas appear to be changing following further research. You may find this interesting reading palindromicrheumatism.org/p...
I think you are probably right. I should be cautious of running with PR until other things have been analysed and/or excluded. Things do seem a little back to front for sure, but it's looking like I might have a relatively swift conclusion, in the next 3 months. There was a fancy scan that the Rheumy wanted to do as well though, so that could delay final diagnosis further I guess.
I would have thought if he was prepared to use a scanner as part of diagnosis then he's being thorough as any type of scan is expensive to perform & they don't use them without good reason. I'm intrigued what it could be!!
It was definitely a further/final test that he mentioned to scan or image my bones I *think* he said. I wish i'd had someone with me at the appointment as I can only vaguely remember what he said the last diagnostic test would be. I'll check the letter again tonight and see if it's mentioned on there. x
I'm just thinking that my current rheumy who is absolutely fabulous in my opinion, might have seemed cold and uncaring to me back in the day. These days I couldn't give a stuff about bedside manner, I just want a rheumatology detective with a great brain and determination to help patients. He is '99%' sure I have PsA. That sounds like a high percentage, but nobody's ever said they were 100% sure although the percentage has risen steadily over the years, I don't know if they ever say they're entirely sure. There are no microbes to identify under a microscope .....
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