palindromic rheumatoid arthritis. help? pls?

millie78

Hi all,

I've just received a letter from my rheumy with results and a diagnosis of rheumatoid arthritis - with palindromic pattern.

I've just read up a bit about palindromic and understand that some people just have that and don't develop, but i have obviously been one of the unlucky ones who have gone on to develop the full blown arthritis. Would love to hear from anyone with this specific form of arthritis. It doesn't sound good from what i've read, because the drugs are not as affective with palindromic. On the otherhand, less joint damage occurs which is good.
For those of you who supported me on the other thread - i think this explains why i felt my symptoms were so very different from other peoples on here! and in a way its good to have an explanation and understand why.

Can anyone explain the following results to me

anti ccp with a value of 200.
ESR 12mm/hr

what would be a normal persons readings of these?

Thank you all in advance

xx

ruthross

I have a diagnosis of palindromic rheumatism - which isn't quite the same is it? Or is it, and they are just calling it something different. I don't know what your blood tests mean, I'm afraid. I don't have any.
If it is the same as my PR, then I've had it 7 years and have yet to show any joint damage. I've not got any better, but I've not got substantially worse either. I had some success with hydroxychloraquine, but feel that it's no longer working well enough (I'm having flare ups about a third of the time) and am looking to try something new. I've started a blog (link on my profile) to help me chart what's happening because there is so little info around on PR and I think those of us with it feel quite isolated and also quite confused because information just isn't consistent.
I hope you can get an appointment with someone soon so that you can discuss your results and an appropriate treatment to start trying. PR may not cause joint damage, but it is still important to treat.
good luck.

millie78

Hi Ruth

From what i understand it probably started as palindromic rheumatism and has gone on to become rheumatoid arthritis still following the palindromic pattern.
i too have had symptoms for 8 years now, although only recently sought help and got diagnosed, and like you i only show slight joint damage which is a good thing.
I am also just 3mths into hydroxychloraquine alongside diclofenac and paracetamol - i am still having flare ups - i think the medication just takes the edge of them, but certainly doesn't stop them.
Good to know someone with similar to me i'll certainly have a look at your blog thank you.

Airwave!

Hi Millie,
These palindromic pains have been a pattern to my life for 40+ years, I do have OA and have had replacements. A GP suggested that I have PR but I have no diagnosis as such and hence no treatment other than painkillers (HAHAH!).

So, where do we go from here? The answer is 'nowhere'. Not until GP's and consultants learn how to deal with arthers and more is learnt about arther.

Its a grin, honest!

millie78

Oh airwaves I'm sorry to hear you sound like you are really suffering. Will u be seeing a rhematologist soon?
Ruth I just read your blog. It much of it could have been written by me. It's a relief to see I'm not alone. I have four young children so life is very hard sometimes. And with no visible signs its so difficult for people to really understand what its like. I don't want to have to tell people everytime I hurt and need to walk slower or have to cancel arrangements!

Airwave!

No, I was sent to the rheumy, who quickly sent me back to the GP who sent me straight back to the rheumy who sent me back to the GP with a note that I seemed to be getting cross! The rheumy said I should get used to the pain and the GP will give me something for it.............and that is where we sit, between a rock and a hard place?

Same story with the bone man at the hospital. Its just like I speak a different language. So, if you are receiving some treatment, thank your stars you live in the right place.

millie78

You know u can choose where u get referred? I didn't have faith in the first rheumy I saw so I googled to find a senior one in my area and my gp referred me to him instead. And its amazing the difference between the two from the tests they took to the treatment offered.
Why don't u ask to see a different one? Fight your corner. Best of luck.

liesa

hiya
i was diagnosed with PR 25 years ago and was told it would turn to RA somewhere down the road...
http://www.palindromic.org/pr/
this website is dedicated to PR, my arthritis is all over the place these days and have had a knee replacement wich has left me with even more pain...
hope you find some answers to help u xx

ruthross

It's making me really cross to hear about how terribly some people are being treated and to find out how inconsistent treatment is across the country - and even between doctors in the same location. I'm so sorry you've been 'fobbed off' as you have Airwave, and I hope you can transfer to a different rheumy (that's what I did too after the first hospital didn't treat me seriously at all). To leave you with no treatment other than painkillers seems to irresponsible. If a GP suggests that you have PR then they should be taking it much more seriously, give you a proper diagnosis and treat you.
I definitely agree that GPs and consultants need more education. And also many need some education in bedside manner too!

I will be definitely be writing a blog post on inconsistency of treatment at some point in the near future - but as I posted twice in two days, probably want to leave it for a few days or even a week! Am worried about overposting.