Palindromic Rheumatoid Arthritis

YOYO

Hi, I am 55 yrs old and diagnosed with Palindromic Rheumatoid Arthritis 2 and half years ago. I work full time and go from being completely paralised with pain for 3 to 4 days to absolutely pain free and wandering what on earth happened! I am getting used to it now, when I am in a flare it can be anywhere on my body, shoulders, arms, hands, knees, feet, ribs and jaw so far! totally debilitating, my husband has to dress and care for me when it is in my upper body. What I can't and don't understand is after 3 or 4 days wherever the pain has been disappears and there is no evidence of the attack? I dont have swollen or misshapen joints (apparently that happens later on after multiple attacks?). I haven't met or spoken to anyone who has similar symptoms to me, maybe if I did I would understand it better?
I have tried Methotrexate, Sulfasalizine and few others but couldn't cope with side effects. I am currently on low dose of 200mg per day of Hydroxochloriquine (the anti malerial drug) for last 12 months along with Tramadol and paracetamol for pain when flared up.
The fatigue can be quite awful to deal with as well. Anyone else out there got similar to me? would love to hear from you or anybody who can shed any light on this 'mysterious' moving disease! Yours Hopefully YO
PS I originally posted this on the Say Hello area but was encouraged to post my story on Living with Arthritis Forum. :???:

bertyboy

Hello and welcome Yoyo , i have oa so cant over any advise but there are plenty that have RA , its a lovely forum with lovely people x

YOYO

bertyboy wrote:

Hello and welcome Yoyo , i have oa so cant over any advise but there are plenty that have RA , its a lovely forum with lovely people x

Thank you May, very much appreciate the welcome YO xxx

valval

hi have only gotten to inflimation level so can not help but welcome val

elnafinn

Hi Yoyo

Welcome to the forum. I have bumped up an old thread entitled "Newbie to forum" started by achinbones. You may find this of some help to you.

There are not many members on the forum with this type of arthritis. I believe Stu 69 has been diagnosed with PR but I may be wrong. Perhaps he will see your thread and reply. I have found a thread in which Stu has replied and bumped it up for you. It is entitled "Pain that arrives one day and is gone the next".

Look after yourself,

Elna x

dreamdaisy

Hello yoyo, what a good name for you as that is what you seem to do with your health troubles. How very frustrating and debilitating this must all be for you, I do empathise. I am not sure what would be the worse situation, to fluctuate as much as you or to be steadily in trouble like me - both suck! I hope the forum can provide some answers as well as support, we all know how difficult life can be with arthritis in its various guises so you will always have willing listeners. I wsh you well and do stay in touch. DD

liesa

Hi Yoyo
i to have had PR, spent the first 5 years (20 odd years ago) taking penicilimine didnt do anything for me...
i'm all over the place with pains these days and instead of getting an exact cause now mines now called 'chronic pain'...
there is a website dedicated to PR called IPRS international palindromic rhuematism society thereis so much dedicated to PR, i'm a moderator on there...
welcome you to here tho, x

dibdab

Hi Yoyo,
Welcome. Like you I was diagnosed with Palindromic around 4 years ago-it's bizarre how it comes and goes so suddenly, but such a relief when it disappears. Mine gradually developed into full blown RA for which I take sulfasalazine and plaquinel, but for a while I think my rheumy thought I was exaggerating my symptoms, until I arrived in the midst of a flare up and he saw how swollen and painful it was. Hang in there and keep asking for the help you need, and in the meantime the lovely folks here at the forum will help to keep your spirits up.
Blessings
Deb x

frogmorton

It's on my notes to Yoyo as you know ( amongst other things)

l read somewhere that it's liek RA 'with a faulty starter motor'. Mkaes sense l think.

Elna l think Stu might have been another who started with palinromic and went on to develop RA, but perhaps he will pop in soon as you know l do get mixed up sometimes :oops: .

Love

Toni xx

Mat48

Hi Yoyo. I was the one who started the "here one day gone the next" thread. I'm on Prednisolone just now for another week so feeling a bit pain free but yes mine comes and goes. It is starting to settle down in places like a finger and a wrist more now though and there are definitely joints where it makes itself more at home and doesn't go away - mainly fingers and wrists. But if rheumy tells me in 3 weeks time that I have Palindromic Rheumatism I won't be surprised at all. I think it's RA though but hopefully in the early stages of the disease still.

Re the Palindromic site - I was interested to note a second one on google with a disclaimer attached. When you open it there is a very interesting talk from a consultant rheumatologist about PR who describes it as "RA with a faulty starter motor" sometimes it catches hold sometimes it doesn't. Both RA and PR seem to take us on a constant blind journey - by which I mean that you never know where the pain will spring up next. And I'm still baffled as to how they can say it's PR rather than sero negative RA - or RA? If both have swelling and pain that moves about - which they appear to for many - and if you can have RA without the positive rfactor then how on earth can they distinguish? If X-rays don't reveal damage then surely that is often because it doesn't show on X-ray until it's pretty much too late?

A friend of mine who is a GP had never heard of Palindromic Rheumatism so I think it must be fairly rare? A warm welcome to this forum anyway. Not sure where Stu has gone now but he was the one who told me about PR and was a great help to me so perhaps he'll pick up on this thread and get back to you too? Mat

YOYO

valval wrote:

hi have only gotten to inflimation level so can not help but welcome val

Thanks for the welcome

YOYO

elnafinn wrote:

Hi Yoyo

Welcome to the forum. I have bumped up an old thread entitled "Newbie to forum" started by achinbones. You may find this of some help to you.

There are not many members on the forum with this type of arthritis. I believe Stu 69 has been diagnosed with PR but I may be wrong. Perhaps he will see your thread and reply. I have found a thread in which Stu has replied and bumped it up for you. It is entitled "Pain that arrives one day and is gone the next".

Look after yourself,

Elna x

Thank you so much Elna, I am overwhwelmed by all the lovely responses!

YOYO

Mat48 wrote:

Hi Yoyo. I was the one who started the "here one day gone the next" thread. I'm on Prednisolone just now for another week so feeling a bit pain free but yes mine comes and goes. It is starting to settle down in places like a finger and a wrist more now though and there are definitely joints where it makes itself more at home and doesn't go away - mainly fingers and wrists. But if rheumy tells me in 3 weeks time that I have Palindromic Rheumatism I won't be surprised at all. I think it's RA though but hopefully in the early stages of the disease still.

Re the Palindromic site - I was interested to note a second one on google with a disclaimer attached. When you open it there is a very interesting talk from a consultant rheumatologist about PR who describes it as "RA with a faulty starter motor" sometimes it catches hold sometimes it doesn't. Both RA and PR seem to take us on a constant blind journey - by which I mean that you never know where the pain will spring up next. And I'm still baffled as to how they can say it's PR rather than sero negative RA - or RA? If both have swelling and pain that moves about - which they appear to for many - and if you can have RA without the positive rfactor then how on earth can they distinguish? If X-rays don't reveal damage then surely that is often because it doesn't show on X-ray until it's pretty much too late?

A friend of mine who is a GP had never heard of Palindromic Rheumatism so I think it must be fairly rare? A warm welcome to this forum anyway. Not sure where Stu has gone now but he was the one who told me about PR and was a great help to me so perhaps he'll pick up on this thread and get back to you too? Mat

Thank you so much for responding Mat, funnily enough you mention the difference or lack of between PR and RA? I was diagnosed with PR following blood tests and 1 week later they they threw PR out and said it had developed to RA following a 2nd blood test! they recokon the Palondromic bit refers to it wandering around the body attacking at random different places. have you suffered this a long time or are you newly diagnosed? I do wander how long it will take for the joint damage to kick in, but on that cheery note, thanks again, it's good to chat to fellow sufferers, less lonley! YO xxx

YOYO

dibdab wrote:

Hi Yoyo,
Welcome. Like you I was diagnosed with Palindromic around 4 years ago-it's bizarre how it comes and goes so suddenly, but such a relief when it disappears. Mine gradually developed into full blown RA for which I take sulfasalazine and plaquinel, but for a while I think my rheumy thought I was exaggerating my symptoms, until I arrived in the midst of a flare up and he saw how swollen and painful it was. Hang in there and keep asking for the help you need, and in the meantime the lovely folks here at the forum will help to keep your spirits up.
Blessings
Deb x

Thanks deb, really appreciate your response, I understand how frustrating it can be when you are in pain and specialists say 'well your bloods say your ok' I was only diagnosed for 1 week with PR, the next week after 2nd blood test they decided it was full blown RA but with the PAlondromic bit still there as it travels around! Thnaks again, it's lovely to chat to fellow suffers, much appreciate your input. YO xxx

YOYO

liesa wrote:

Hi Yoyo
i to have had PR, spent the first 5 years (20 odd years ago) taking penicilimine didnt do anything for me...
i'm all over the place with pains these days and instead of getting an exact cause now mines now called 'chronic pain'...
there is a website dedicated to PR called IPRS international palindromic rhuematism society thereis so much dedicated to PR, i'm a moderator on there...
welcome you to here tho, x

Many Thanks for your response Liesa, mine has developed into full blown RA following a 2nd blood test, it all happened within the 1st weeks of my diagnosis but they say the Palondromic bit remains becuase it is traveling around at random! I'll take a look at the site for PR though, thanks for that. YO xxx

YOYO

dreamdaisy wrote:

Hello yoyo, what a good name for you as that is what you seem to do with your health troubles. How very frustrating and debilitating this must all be for you, I do empathise. I am not sure what would be the worse situation, to fluctuate as much as you or to be steadily in trouble like me - both suck! I hope the forum can provide some answers as well as support, we all know how difficult life can be with arthritis in its various guises so you will always have willing listeners. I wsh you well and do stay in touch. DD

Thank you DD! much appreciated, it is lovely to have had so many lovely responses and yours really made me smile! I never thought about the link between my user name of YOYO and my condition! they are my initials that I tend to use (well YO is anyway! I just double it up! ) thnaks again xxx YO

Mat48

I'm intrigued that they checked you out again so quickly Yo Yo. Its good that they did of course and it's very interesting that they've kept the palindromic part of your presentation despite diagnosing RA?

I did check out PR but found it very confusing because it all seems to be down to which rheumatologists believe in Palindromic Rheumatism and which ones believe it is actually simply the early stages of RA - which can sometimes burn itself out. For most RA sufferers the disease is fairly palindromic I believe? I think because that's the nature of the disease - so not sure what the merits of having them catagorised separately are, as it just seems to make the whole thing more isolating for those diagnosed with PR - who may or may not go on to develop full blown RA?

PR sounds like a continuation of the limbo-land I've been hating to date to be honest. But I suppose there is a percentage who completely recover and that should make me feel more hopeful that i might be in that category if I do turn out to have PR? But the hellishness isn't just down to the pain and stiffness and upredicatable arrival and departure of this pain but it's about all these definitions and distinctions - they bother me terribly!

Reading the experiences of people with PR reminded me tales from my brother-in-law who is partially deaf and grew up as an only child in a hearing family in a hearing world. My sisters are both profoundly deaf but somehow that seems to have been an easier experience than his was - caught between the two worlds?

Sorry I do hope this doesn't offend you good people with PR? I guess I'm just very unnerved at the moment by not having a diagnosis to get my head round yet. And then even when they take more specific blood tests such as the anti-CCP it takes ages to find out you are negative from one rheumy apt to the next. And if things can change and you can go from being sero-negative one week to sero-positive the next as you did YoYo - then surely they need to be clearer about these distinctions and stick to them UK wide?

Don't mind me tonight though please - I get mood swings just now with these steroids and the roller coaster is heading down the way tonight!

PS and yes the name YOYO is great - you've played a blinder there!

Mat48

PPS - I thought arthritis that jumped about the place was called "Polyarthritis"? That's what my physio told me that GP was calling mine?

suzygirl

Poly arthritis is arthritis in multiple joints.

Mat48

Oh thanks I get it so it's lots of joints simultaneously rather than moving from joint to joint as with palindromic? I'm getting there slowly with all of your help! Mat

dreamdaisy

Hello Yoyo, it's lovely to hear from you and thank you for reply. I reckon we all 'yo-yo' one way and another, but perhaps with varying amounts. I can't help much on the arthritis front as I don't have that sort but we ALL understand the limitations, pain and frustrations, believe you me. I am off on holiday tomorrow - woo-hoo! - but I am taking the lappy in case life gets too tough joints-wise and I need some company! I hope we chat again soon. DD

traluvie

Hi yoyo,

Glad you posted on here as advised, can see you have had a lot more responses and some kind words,

I have been busy with the kids the weekend so didn't post..Hope you are settling in ok luvie and i look forward to seeing you around..xx

ruthross

Hi everyone, and especially Yoyo.

I too have Palindromic Rheumatism. Was diagnosed 7 years ago. Happily, it has yet to develop into RA, but it has not cleared up either. And yes, sometimes the fatigue is as hard to cope with as the chronic pain. I can get attacks in single or multiple joints. It can last for hours, days or weeks. Flare ups can move from joint to joint in a matter of days. One day I can be enthusiastically dancing in a zumba class, the next day I need a stick to walk, or need my partner to feed me because the pain and paralysis in my hands is too much.

It is nice to find others who experience the same thing because sometimes you really think that you are going mad. Friends don't understand and they also don't seem to get that it is a chronic condition that, as yet, I have been unable to treat successfully. I am on hydroxychloraquine but it seems that it's only preventing me from deteroriating rather than stopping flare ups.

Nothing shows in my blood - even when I have obviously got inflammation. I am treated as a 'lower priority' at the rheumatology department because the likelihood of joint damage is lower than it is with RA. Yet I can still have weeks of pain, cannot work full time and am currently struggling not to get depressed. At the moment, I'm finding the unpredictable nature of it really hard to cope with psychologically. So, even though my flare ups are quite mild right now, my ability to cope seems to have disappeared.

For me, the diagnosis of PR was a relief, but yes, I do think that it's still a bit like being in limbo because the registrars that I often see know nothing about it and treat it as less serious. If I had a diagnosis of RA, I think maybe I might have been treated better on the NHS. Currently writing an official complaint over a consultant who told me that "My appointment had already taken 15 minutes and I'd already taken up half an hour of his time" when I wanted to discuss something with him. Even though he'd wasted at least half of that time asking me questions that could have been answered had he bothered to read my file.

Anyway.... I wanted to say hi and to reassure Yoyo that it's definitely a weird one, but you're not the only one! - though, as you say, you have now been diagnosed with RA. I hope you find a treatment that works for you.

Ruth

Airwave!

Yep PA is a rotten thing, fools you into a smile and then arther bites! I seem to suffer less time between bouts on top of all the permanent aches and pains. This has been an ongoing theme for 35 years now. Keep smiling.

claircoult

Hi!

Ruth, I found what you wrote very interesting. I was diagnosed by one rheumy as having PR but my last rheumy said I couldn't possibly have it because my inflammatory markers are normal and don't have massively swollen joints.

I do have flares of pain that can last from a few days to a few weeks, the pain moves around from joint to joint and the pain can range from a generally achiness to quite severe pain. Mine tend to follow 2-3 weeks after a virus or infection and I've been diagnosed with Reactive Arthritis too but no-one seems to be able to agree on a diagnosis.

I was on hydroxychloroquine but my last rheumy advised me to stop it because it should have stopped the flares. I told her it had helped reduce the severity of them. I wasn't happy with how she treated me and I complained and she has referred me to another rheumy.

Clair

ruthross

Clair,
I think one of the problems with PR is that there is not much research on it, and not much education of the rheumatologists about it. My rheumy (the nice one) told me that in his huge book of arthritis, there was ONE paragraph on PR. ONE! So it's no wonder we get different treatment depending on who we see. I actually think it's quite common not to have any markers or any rheumatoid factor, and in fact, that's how they often decide it's PR and not RA. But yes, it's often a battle to see a rheumy who understands and is sympathetic. Sometimes I think that they should experience what it's like to have PR for a few months so they can truly understand it!

But yes, your flares of pain from a few days to a few weeks and moving around does sound like me. Sometimes it's very mild and sometimes it's agony, so that's similar too.

have you had a flu jab by the way? I made sure I had one this year.

Good luck with your new rheumy. I hope they are better.
It's definitely good to make contact with other people who can understand.

take care,
Ruthx