Ra and palindromic arthritis

Over xnas I had sudden attack of excruciating pain in my hip and shoulders. The shoulder pain moved after a couple of days frkm my left shoulder to my right and is now back in my left one. I had blood tests and showed my rheumy consultant photos of my inflammed wrist. She said it looks like palindromic.

Does this mean I have palindromic rather than ra (I do have positive rheumatoid factor)?

Im all confused as to what this could mean for me - is it gd news?

Tina

23 Replies

oldestnewest
  • Well just looked it up on Wiki and it says there is no damage caused by attacks, that sounds like bloody good news to me if accurate! Why do rheumys not explain these things when they need to i.e. immediately because a two word name on its own means nothing. Perhaps you have RA as well but I know it is most definitely possible to be positive for rheumatoid factor and not have RA, lots of perfectly healthy people do which is why that particular indicator in blood tests is not a definitive test for RA on its own.

    Hope this heralds a better phase for you Tina. Luce x

  • Thanks Luce, lets hope my diagnosis is changed to palindrome if it means no damage. But the pain of the flare was horrific with a fever along side which made it scarey too. My daughter wanted to call ambulance cause it came on so suddenly and horrifically - was really really scarey.

  • Sorry, over focusing on what might be positive! the pain you describe sounds frightening, hope that goes soon.

  • You were right to focus on the positive. We have to look for any plus sides to these horrid auto immune diseases. I can at least hope for reduced or no damage to my joints if she does change my diagnosis from ra to pallindromic :-) my flare has subsided to just one shoulder and down that arm now so I can walk again which is brilliant.

  • rawarrior.com/palindromic-rheumatism-is-not-a-rare-form-of-rheum...

    I've read this in the past and found it interesting, hope the link works for you.

    I reckon I suffered from this for a couple of years before RA appeared, I work with someone who has this and he has long periods of remission :)

    fingers crossed!

  • i was told i have this a few weeks ago wasn,t given any info had to find out from internet still insure how its effecting me as i have oa in hips and knees and swollen hands so good luck xxx

  • This is the main condition that I keep thinking I might have too. I have never felt entirely confident in my diagnosis of full blown RA because I too have a positive RFactor but negative anti-CCP.

    Palendromic Rheumatism is defined by a British consultant rheumy somewhere (on the Palandromic site I think) as being much like when an engine sparks over and over but doesn't ignite to become a fully fledged RA - but for some it can do after a while. I can't remember the percentage of people for whom it does or doesn't become full blown RA now. It's possible to have full blown RA but to have some of the pain being palandromic- so that's probably what your rheumy meant.

    I experienced this type of pain a lot last year prior to diagnosis but don't appear to have sustained any damage - although I can never fully clench my hands and my wrists do feel a little tight always now, but I'm not sure how Palindromic as opposed to RA can be diagnosed without monitoring by X-ray? Mine has never yet been defined as Palandromic but it's always in my mind that it could be.

    Incidentally a palindrome is a "word, phrase, number, or other sequence of units that may be read the same way in either direction". So applying this term to joint pain and swelling means that the pain comes on and is excruciating and then returns to what it was before it started without leaving any damage in it's wake.

  • PS just read a little more and see that people with palindromic rheumatism don't usually have elevated inflammatory markers - which I do so that's maybe why I was diagnosed with RA as opposed to PR.

    Also interesting that it's not called Palindromic Arthritis it's called Palindromic Rheumatism - presumably because arthritis is usually damaging to joints, whether it be OA or RA or the many other forms?

  • hi tilda,i was told i had palindromic rheumatism a few weeks ago,all my blood test have come back negative but i have had constant high inflammatory markers for 6 months and terrible pain in several joints,my rheumy didn,t tell me he just gave me hydroxy and my gp explained more,i know its early days but don,t think hydroxy is working to well as it upset my tummy ,xx

  • Hang in there Sheener it used to upset mine a bit too but honestly it really is nothing in terms of side effects for most people compared to other DMARDs and will probably settle down soon as mine did. It seems from what you've been saying on here that most of your pain is due to aggressive OA - but it's possible to have all the different types going on at the same time so best just to tackle the thing that hurts and worries you the most in terms of deterioration I guess. Tilda x

  • I have been reading up on palindromic since the other night - totally missed the bit about no elevated inflammatory markers - she did say that my inflammatory markers had dramatically increased during this flare, so maybe its not this afterall.

    I did have ultrasound scans of my wrist and knuckle on my left hand after this flare had started to subside and she is happy that I have next to no damage thus far (not yet a year into my diagnosis - but that is still positive news).

    I am already on mtx 25 mg subcutaneously to get my inflammatory markers down, and codeine and paracetamol for the pain - but these dont touch this new pain - I wonder if I can take some Ibuprofen at night so I can at least get some sleep (as they seem to help a little)?

    So much confusion and little advice from the medics :-(

    Tina

  • HI Tina, I suffered with Palindromic Arthritis way back around 1994, my diagnosis was made by a Rheumatologist, I was told then that the prognosis was good. He straight away put me on Salazapyrin (dmards) can't remember the dose, I gradually weaned myself off the medication until I got down to taking one a day. Later at a Rheumy appointment when I told the consultant I had cut the medication to one a day he said ' for all the good that's doing I may as well not bother'. The good news was that I went into remission (or was cured, don't really know) with no joint damage. That continued for the next 16 years so there is light at the end of the tunnel for you, it hasn't returned.

    I have now been diagnosed with RA, been on Sulfasalazine for about four weeks then had to come off it (couldn't telerate it), Now waiting to go on Methotrexate and hoping it works for me. Like Tilda I am a bit in denial as to whether I really do have RA. When I see posts from other members on here, I am not suffering half as much as they do. My symptoms are: periodic stiffness in knees, aching and stiffness in hands, sometimes shoulder stiffness.

    I do feel quite a fraud when reading the posts and seeing the pain and depression that some of you suffer. My medication at the moment for my RA is Naproxen and painkillers if I require them, up to now I have found paracetamol helpful and haven't needed anything stronger.

    I was diagnosed with diabetes 2 a few months ago, so I'm really tryng at the moment to deal with it. Have had to go on medication as diet and exercise alone has not been enough. I'm not too good taking medication seem to suffer a lot of the side effects from it.

    So sorry to read of the pain and depression that some of you suffer from. I hope that all of you suffering this dreadful disease can be free of pain, In 2013.

  • Thanks for your reply.... I am still unsure whether it was just this flare that was palindromic as I was diagnosed with RA in Feb and am on 25mg MTX subcut already or if the diagnosis might in the future be changed.

    However, this flare came on over a matter of hours and was horrific for a week before it started to ease - but I did have a cold and tonsillitis a week before hand, so my consultant said it might be the infection that caused the palindromic flare.... so still confused....

    But like everyone on here says - there are so many variations and it is different for everyone so we just have to trust that our consultants have good judgement and intentions when prescribing our medication for us.

    My wishes to everyone on here are for reduced pain and confusion in 2013 :-)

    Tina

  • I was on methotrexate for 7 months ,and my hair fell out,a little every month, good luck..

  • Sorry Tina, never mentioned about the pain you are suffering. I do know how severe it can be and what I am suffering at the moment is nothing like I suffered then. That's not to make light of anyone else's suffering on here, I would'nt dream of doing that.

  • The other possibility for very extreme pain of this kind is septic arthritis which imagine would be damaging. Not sure how they differentiate between PR, Septic Arthritis and RA but nothing I've ever experienced, including childbirth, was as painful as the stuff that went on in my wrists last year - and yet they weren't swollen for very long at all unlike other my fingers and knuckles which hurt far less?

  • I agree with your comparison of childbirth and this being worse. Even in labour I just said "owowowow" during contractions, but with this I woke squealing .... the only way I could describe the pain (if I tried to even slightly move my leg or if it twitched) was that of an elastic band twanging (ie felt like tendons were snapping) at same time as most horrific electric shock radiating from the groin many times worse than the worst cramp sensation you could imagine.

    Lets hope that we dont have to experience that again Tilda :-)

  • Well I've had the odd flare up since and my inflam markers have soared since but it will be a year in February since I experienced that torture anyway! My GP gave me Tramadol and Naproxen afterwards but I rarely touch them. Its the anti inflammatories you need though. I've never got up to those dizzy heights of MTX - just 15mg sub cut and Hdroxy but I do feel these keep my RA at heel effectively - perhaps you need an extra DMARD too? X

  • Last time I saw my Rheumy nurse she suggested adding sulphasalazine, but my consultant said she would consider this in Feb when I see her, depending upon blood results and if I get any more flares

  • Ah well make sure that you record all this latest pain and photo anything visible so that you can evidence these flares just in case its all got much better by February. TTx

  • Hi, I started having PR attacks 2.5 years ago - pain like you can't imagine I know, and had to call out of hours doctors in the nights. My Rh factor was originally neg but then changed to positive. The Anti CCP antibody blood test seems to be the important one though and mine is quite high now - over 300. I started on Hydroxychloroquine some time ago which worked - i.e. stopped me having the attacks, until the dose was lowered, then they came back so in Sept 2012 I was put on MTX and am now up to 12.5mg per week. So far so good although I do still have stiff wrists, and recently twinges in both hips and have a sore back but this may or many not be related. From what I have gleaned on the net, PR quite often can develop into RA if it is not treated with DMARDs quickly. That is the advantage of the Anti CCP blood test as it is an accurate predictor or what may be to come - although my Consultant played this down but maybe he is just being encouragingly positive! Prednisolone (steroids) for me were the only drug to stop the pain although they take about 4 hours to kick in. When I had severe neck and shoulder pain in July 2012 I was given a Steroid injection in the bottom (no problem) but it only worked for a few days and then I was put on 2 x 5mg Prednisolone daily. (I'm now trying to cut it out slowly whilst awaiting the full and slow effect of the MTX to work). I hope this gives you some information that may be of use to you. Oh, my inflammatory markers though have been ok so far. Good luck

  • ps. I believe that the standard first line DMARD now is combi treatment of HCQ and MTX

  • Thanks Zena, its good to know of others with these attacks as my consultant used term without explaining anything. Reassuring to think they wont stop my mtx as it has taken 9 months to feel it was almost under controk (apart from this flare that is).

You may also like...