Palindromic Rheumatism Is Not a Rare Form of Rheumatoid Arthritis
My assessment: bad PR for Palindromic Rheumatism
A few months ago, I wrote a post about Palindromic Rheumatism (PR). I had met a nurse who said her Rheumatoid Arthritis was “palindromic.” The symptoms come and go.
She told me it was a rare form of Rheumatoid Arthritis which did not cause permanent damage, but was 50% likely to develop into regular RA. She teased me to check out her story. Of course, her story checked out and, eventually, I wrote that post.
Now that I knew what it was, I noticed more and more Palindromic Rheumatism stories in RA forums. I told my PR friend I was beginning to wonder whether Palindromic Rheumatism is rare after all. She agreed.
Meanwhile, I continued my research about the onset of Rheumatoid Arthritis. I found many people with RA talk about years of painful Rheumatoid Arthritis symptoms which would subside, making it difficult to diagnose. Some of them say that their current rheumatologists actually explain that they must have developed Rheumatoid Arthritis after undiagnosed Palindromic Rheumatism.
That was my own story, too. So, I deduced that Palindromic Rheumatism must not be rare as “everyone” says it is. Writers for websites such as about.com, Wikipedia, and the International Palindromic Rheumatism Society must have read the same research that I had when they state that in these links that PR is “rare.”
Research proving it
I got all excited when I read medscape’s Rheumatoid Arthritis, Spine article. In their discussion on courses of RA, they said this: “This is also known as the palindromic type of RA, and it affects around 40% of patients.” The research they used says 40% of all Rheumatoid Arthritis begins as Palindromic RA.
Last year, NIH came to the same conclusion: “CONCLUSION: Palindromic rheumatism occurs more frequently than previously recognized.” Back in April, the Journal of Rheumatology reported that a long term study revealed that at least two-thirds of Palindromic Rheumatism cases become full-blown Rheumatoid Arthritis. I knew it!
Palindromic RA is a rare form of Rheumatoid Arthritis, my eye**
Two visitors stopped by yesterday. One was a raccoon who invaded some gardening supplies left out back. What on earth was he eating so voraciously?
The other one was inside of my hip. As I stood, I let out a “Eaaaaaow.” For almost twenty years, I have made that sound when one of my hips surprises me as it begins a flare. I can suffer silently after that first moment of shock. It used to go away after a few days. I had no idea what caused it. Of course, now I know what it is.
The raccoon? He was gobbling down a bag of bone meal. Fitting.
Recommended reading:
- My original post with cool graphics: What is Palindromic Rheumatism?
- Basic patterns of RA: The Four Courses of Rheumatoid Arthritis, part 1
- Murphy’s Law and RA: Old and New Adages for Rheumatoid Arthritis
**(Hint: “eye” is a palindrome, reading the same both ways.)
Hi Kelly! just read your blog about medical records ..its good advice for anyone not just RA! http://digg.com/u1CyBl
especially enjoyed the connection between you, the racoon and the bone meal.
great post! the raccoon cracks me up for some reason. hope all is well for you! I just looked at your new sight- it looks great! You amaze me 🙂
Good information, what has surprised me over the years is that the connection between the palendromic arthritis and Rheumatoid Arthritis is not made sooner. I have had the RA diagnosis for years now, but was told about the palendromic arthritis in hind sight, by a dr that was actually listening as he took my history. Even today, I have the palendromic effect, when I flare it is rarely symetrical. I still have spells where I feel the effects move from one joint to another, around my body in a giant circle only to retrace it’s path over the next several days.
This is a great article, and I can’t tell you how frustrating this it is to try to deal with a disease this controversial. The fact of the matter is that there is so much research and evidence to support the overwhelmingly obvious conclusion (in my opinion) that it is a specific onset on rheumatoid arthritis. There are multiple medical books, articles and studies now saying that in fact the majority of people that have rheumatoid arthritis have or continue to experience palindromic fluctuations in symptoms.
As someone who was diagnosed as having PR, I have been trying to educate and increase the lines of communication between PR and RA suffers. In that spirit I am trying to initiate a community social network for those suffering from RA and/or PR. Please help me to build up the membership to this social network specifically for those of us with hot joints! Thanks!
http://palindromicrheumatism.ning.com/
I have patients consulting because of palindromic rheumatism every now and then. What I see more often are palindromic symptoms in patients who respond otherwise very well to therapy.
Thanks for the info on palindromic rheumatism. In your previous article you mentioned that there was a PR website in the UK. I hope people know that it’s not just for UK people, anyone can join.
Boy do I understand those sneaky pains. One minute you’re just fine and the next is a blinding shade of red for me and some very unladylike words. My first thought was always what did *I* do wrong. Took so long to realize I hadn’t caused it, it was just the disease process. It helps when you can identify overdoing it from just normal (oh, who am I fooling, there’s not normal with RA) disease.
If I overdo, and I’m sure I’m not alone in this battle, at least you know what to expect. There’ll be lots of hot water, ice packs, heating pads or BioFreeze included and planned rest – anywhere from hours to days. But I can take my pain meds before the pain is out of control. I know this works.
Laughed at the racoon too, especially if you have seen a new commercial. The women carefully herds a racoon into her home, talking about good kitty, kitty. Cracks me up everytime because my eyes are starting to fail a bit.
What a great post. It sure answers alot of questions!! I am recently diagnosed with PA and I swear, after 18 years of thinking I was only having Fibromyaglia attacks (I was diagnosed with that 18 yrs. ago), I am convinced that I’ve had PA all along. I thought I was going crazy, the way the pain and flares would jump throughout my body, all day. I even thought, “Could I have bone cancer?”
The raccoon story/correlation was hilarious. Thanks for the post and for a good laugh!!
I too was diagnosed with PR at the age of 26 after my first baby was born. I am now 48 and was diagnosed with RA 7 years ago. I have so many questions to ask that are being answered as i route through this wonderful website.
I am British and live in a small village and don’t seem to come across other RA-ers who are my age or younger, but i’m sure they are out there!
I try to keep as active as the RA allows, and the one thing that keeps me going is my beautiful horse Hattie, but i am finding it more and more difficult to achieve the things i used to achieve related to her(depressingly), and remaining positive is the biggest daily achievement! Building a website is one area i have channelled my frustrations…
Many years ago I was told PR was ‘rare’ and likewise couldn’t find any information anywhere about it..until this website!!
Brilliant.. keep up the good work and keep well Kelly! Sara x
When I first read about PR all I could find was “rare” too – so much “wrong” information out there having to do with Rheumatoid – even on “good” sites! Good luck with Hattie & your site. 🙂
Even though I have had RA for over ten years, this “rare” palindromic RA seems more likely to me. I can have such awful pain in a joint and that pain can subside (only to return days later). Guess it doesn’t go away, but it lingers so I cannot ignore its return.
I really really like this site, Kelly. I’ve learned more than in most other ones that I’ve seen. Thanks so much!
Ruthe
Ruthe, I think the main thing that makes it “palindromic” is that no damage is detected. The flares just come & go, but they can’t notice permanent effects. As I’m sure you read, it does often turn out to be just regular RA. The palindromic period was just “early” RA.
Thank you so much for the encouragement 😀
I too am struggling with “PR”.
QUESTION TO ANYONE OUT THERE: How do my symptoms compare to your PR or the way your RA began?
Shoulders and wrists flare most frequently. Last week my right hand was hurting so much that for 2 nights I could barely sleep. It kept going numb and “pins & needles”. My thumb felt like it was burning. This may have been brought on by tightly lacing ice skates for my child. After a few days, pain and ache gradually eased away and then suddenly, a few days later, my jaw was “stabbed” into non-action about 3pm. I could barely open wide enough to slip a fork of soft noodles into my mouth at dinner. It is much better today (2 days later). My top and bottom back teeth now fit together again. Yesterday I mopped the kitchen and now my wrists are aching again and shoulders are “iffy”. Ugh – it is so hard to learn what my limitations are because sometimes the pain comes without any relationship to what I have done. Sometimes I sense that I have over-done something and pay for it hours and days later (when recently I could do it without ill effects).
I FEAR MY SYMPTOMS ARE TURNING THE CORNER TO “REAL” RA. Though none of my pains remain at the same level over more than four days. Praise God!
I don’t know what I have… but it is something frustrating!
Suzy, how many 2nd opinions have you had? I’m surprised how much docs don’t agree on all this, so if you are doubting the judgment, then ask another one – just my opinion. The patterns of progression vary so much.
Thanks for your reply Kelly! My husband and I were just discussing that very thing. I am ready to see someone new. The frustrations of dealing with the mysterious pains that bounce around are being outweighed by my fears of possible joint damage that might be avoided with different medication. Photos online of mangled hands freak me out. Most include a comment that this does not have to happen these days. I recently saw my aunt who lives out of town… and her hands are gnarled by RA. Wah!
No cure yet, Suzy. But I agree we should do all we can to fight damage -visible & invisble. Good luck.
I just received a bunch of flyers and a guess-diagnosis of palindromic rheumatism, even though there is no come-and-go and my pain is constant and all over. Just wanted to let you know there’s another one. And as always, thank you for saving my sanity on a rough pain morning.
so is that what happened? are you going for another opinion?
I have a lot of questions about PR, but after reading the above it helps. I do have RA, but when asking the RA doc about why it moves at times he said that is the way it is. One time it may be shoulders and feet, or wrists, then it may be knees, and now since all the other cleared and went away, it is now on the right inside of my left ankle, and does have swelling, and sure makes it difficult to walk, but not all the time. These pains come and go, which makes me think it might be PR. Will an RA doc admit to PR? I did check out other websites on PR and found it very interesting as is your information as always.
In hindsight, I think when my symptoms began I had Palindromic Rheumatism. I remember, long before I even saw a doctor, googling furiously to try and find out what might be wrong. Never came across it until years later, on this site. This site is a great resource – has helped me so much. Thankyou Kelly.
WOW! Finally! An explanation!
Ever since I was 10 or so, I would have short attacks of pain – in my hands, usually. Eventually in my hips, shoulders and feet as well. Doctor after doctor diagnosed tendonitis, bursitis, turf toe, muscle strains…but none of those really made sense as primary diagnoses because the pain would show up for no good reason and usually only lasted a few days. At first I would go years between problems.
But by last year, at the age of 33, I was only getting a few weeks between “injuries”. I got tired of it and insisted my doctor stop chalking things up to injury and overuse. I would go to bed fine and wake up in pain. I was *not* repeatedly injuring myself in my sleep for goodness’ sake!
So she sent me to a rheumy, who was the first doctor to take it seriously since my pediatrician. On a side note, I do have to give my pediatrician props. He believed me, and had the elevated ESR in hand to prove there was *something* going on, he just couldn’t figure out what it was because my RF was -and still is- negative, and my joints have never been visibly red or swollen.
But as of February 2011, my finger joints and wrist were spongy, my CCP antibodies were at 978, my ESR was in the 80’s and my CRP was in the 30’s. So RA it was.
It’s just nice to know this isn’t an unusual pattern…. It doesn’t do much for the RA, of course, but it does a lot for my peace of mind!
I was diagnosed with RA last year, after an episode of knee swelling following my hysterectomy. I am 38, and have 4 kids. The diagnosis never seemed to fully “fit” as I would not have morning stiffness, X-rays did not show anything, even when I had severe pain. Although my fingers occasionally go numb, it is really my knees, hips, ankles, and shoulders that are mostly affected, and usually one or two at a time. My pain gets worse over the course of a day, and can even last just a few hours, or a week. I really thought that I was sleeping wrong, or overdoing it, but the pain would get so bad, with sometimes no explanation. I even started to think it may be in my head.
I decided to try seeing a different doctor, as the Rh doc I was seeing was not very good at explaining things. The new doctor did a battery of tests, X-rays, blood work, urinalysis, and the reports came back as probable PR. Reading all of these posts, I am having an amazing Aha! moment.
I take Plaquenil, and Tramadol, but I’m not sure if they do much good. Sometimes nothing helps. I have been taking some old Vicodin prescriptions from past surgeries, and they work the best, but I know they won’t give me more, because of the risk of dependence.
Are there other pain meds that are safer, but stronger then Tramadol? I tried Aleve, Ibuprofen and Tylenol, but they don’t seem to help, and sometimes upset my stomach.
I can’t imagine my condition getting worse, I work full time, and have 4 kids under twelve. I don’t like disappointing them, when they want to do things that I can’t, or don’t have enough energy for. Even my marriage and sex life has been damaged by this invisible thing, that I have a feeling my husband does not always believe in.
At least I know what it is. I suppose that should bring some comfort.
About 3 years ago, I thought I to was loosing my mind. One day, my one foot hurt, to the point it was hard to walk. Then 3 days later I was fine. A few months later my shoulder (don’t remember which, cause I’ve had it in both)started to hurt, to the point I could barely get dressed and brush my teeth. Then it became a regular problem. Every other week I had a new problem that would last about 3 days. While doing some time in the military I finally went to a doctor and they gave me some medicine and guessed I hurt my self doing pushups. Finally, about 2 years ago, my feet starting hurting every morning for hours on in. Family doc thought it was the foot tendon thing(forget the name)and told me to start stretching more. Then about 1 1/2 years ago, I went back to my family doc and said I’m loosing my mind. He said know you have fibromyalgia. Started on Cymbalta, muscle relaxers and every prescription anti-flamitory under the sun and nothing seems to work. Finally in Jan this year I made an appointment with my Rheumy, per advise of my husband, and she tested me and first thought it was PR also. Then about a month later it became systematic in hands, feet and wrists. She said I also was one of the rare cases where it turns to full blown. I’ve tried MDX, plaquenil and now going to start Embrel. Joy… I hope this helps. I feel like a wheany at work, cause they can’t see my pain. And now the military reserves is talking MEB(maybe discharge with medical evaluation). This sucks. I never thought a few years ago that I would spend my free time researching such a rarely talked about disease. Everyone thinks its just another type of regular arthitis. Ugh…
Just been diagnosed with PR about 3 hrs ago, am i relieved i thought i was going out of my mind, like most of you i had random pain in several parts of my body but usually my limbs, last 2 months in my hips as well. When doc asks where it is i cant explain as it is the bones in one part and muscles in another, i cant even tell you haw many invasive tests i have had over the last 5 yrs, i understand there isnt alot to be done other than pain man management, very difficult with a 50hr week and 3 children, i will keep you posted on hw i get on
I forgot to leave this comment when I first read this. This is exactly how mine started! From 12 years old to 35 the symptoms were (come and go),they would stay for months or weeks then go.The fatigue was terrible! The symptoms were in my shoulders,knees,jaw,and hips. NOT MY HANDS,WRISTS OR FEET! At times it was hard to walk or lift . I went to several Doctors through the years,but I got no help!
yes, Naomy. It can take decades for them to recognize it – especially since it often doesn’t start in hands.
I hadn’t heard of PA until today and now I am wondering if this is what I have. I have had several flares over the years, sometimes lasting months but the Dr is saying there is no joint damage as of yet. The pain and swelling come and go and since I’ve been on meds (plaquenil, methotrexate) it moves from joint to joint but never a big full blown out flare like before. My blood work shows a high ANA but everything else comes back normal or negative.
In the past the pain has been just about every where in my body and the last big flare that I had, when I was diagnosed (Jan 2012), included knees, ankles, hips, shoulders, wrists, elbows. Within hours of taking my first dose of prednisone the pain was gone by at least 50% and continued to lessen over the next few months while I transitioned to my current meds. The highest level of pain now would be about a 3 out of 10 and it generally only last hours or at the most a day. Saw my Rheumy yesterday and he didn’t say said anything about PA but is just going to monitor my monthly blood work and get a new big panel done in 6 months.
Hi Kelly
Thank you for your website..it is so informative! Have you come across anyone with RA whose joint pain was relieved by antibiotics?
Thanks
Brigitte
Hi Kelly – Like you, I suspect PR isn’t as rare as they say in the text books. I remember my first attack was at age 13. I was 42 when I finally got a diagnosis. I’m sure one reason it took so long was that during my 20s and 30s, attacks were tied to my menstrual cycle. Every month, 10 days to a week before my period, I’d get a flare up. The minute I mentioned ‘menstrual cycle’ to doctors, you could see the shutters come down: “Menstrual stuff. Don’t listen. Not important. Possibly imagined or exaggerated anyway.” I do suspect that medicos are better informed about PR these days so maybe it wouldn’t happen if I was doing the rounds looking for an explanation now. Maybe. But it makes me wonder, how many other women with PR have never had a diagnosis for the same reason – being dismissed, and encouraged to ignore it.
Thanks for your blog.
Matilda
i have had PR in my feet and hands, and only had pain once before as bad when I had shingles,I was given a steroid injection in the backside, and although I am having twinges, I have not had a severe reoccurrence to date that was 6 months ago.
I concur so far as rarity of the disease is concerned. I too have sudden flare ups in the joints, with starting and ending points being different and middle one being extremely painful. However, they subside after a few hours, but sometimes lasting as long as 24 hours. I also suffer from frozen shoulders and thinking about homeopathy treatment for both ailments. Both of the ailments were noticed after I had undergone quadruple bypass heart surgery. Any suggestions?
I am so encouraged that my problems have a name. when I read about Palindromic Rheumatism it was as though my name should have been written next to the post.
I am almost 100% sure this is what I have been sufferieng from for many years now. I also believed it (whatever pain I am experiencing) was because of something I have done wrong. I have named my mostly back pain problem as ROVING BACK PAIN. I have told several doctors this and none have put 2 and 2 together. We have to be our own advocates!!! I have so many joint problems ie “bunions”, Mortons neuroma, whiplash, TMJ, dry eyes, so-caled normal arthritus in my hands, chronic digestion issues, erosive lichen planus (mouth and genital), high piched ringing in both ears, very stiff tendons.
Sometimes I just want to give up. Doctors think I am a pain pill seeker. Ha
Thank you for this site!! I will let you all know if I am actually diagnosed as I do not have a RA Dr yet. * The preliminary tests for RF and CCp are negative……….sigh
Hi Kelly,
Thanks for your article! I was diagnosed with RA 3 years ago and had to change doctors. My new rheumy told me I don’t have RA (even though methotrexate and remicade helped for awhile) that I actually have PR. He says my blood work has been normal for a long time and that other than bunions in my feet that my joints are normal. I get these flares. My doc keeps want to prescribe meds for neuropathy which are mostly anti-depressants because I didn’t do well with gabapentins. I’ve read these meds help with neuro pathic pain, but it seems disconcerting considering I don’t feel I have any depressive symptoms. I’m wondering if anyone has taken the treatment for malaria for this? I’ve read about it in a few places. Thanks!
Sara, Plaquenil is a common first drug to try in RA so many have been on it. Some respond to it and then don’t need the stronger DMARDs at least for now.
There are some other articles here that discuss a diagnosis of PR. I don’t really think it’s a separate disease – just an earlier stage of rheumatoid disease – unless it turns out in some cases to be another inflammatory arthritis (PA for example). You might want to read through other articles & comments: https://www.rawarrior.com/tag/palindromic-rheumatism/
Has there been found any relationship between Floaters and R.A.?
I was also diagnosed with Palindromic Rheumatism several years before my diagnosis. I also was told as a kid and young teen that I had Rheumatism several times when I would have recurring problems with a knee. Interesting.
I had 1 episode about 6 years ago that they thought was a torn MCL….doctor was talking surgery and when they did the MRI….they only found inflammation throughout the knee. Episode came on suddenly…was very bad for over a month and left as mysteriously as it arrived.
All these comments are the story of my life. About 20 years ago, in my mid 40’s, I started having short term acute joint pain in almost every part of my body – hands, wrists, knees, ankles, neck, shoulders – oh, man the shoulder flares were the worst! My doc sent me to a rheumatologist who did the usual blood tests and every one of them except for the ANA was normal The ANA was extremely elevated, but would drop back to normal when I wasn’t having flares. He called it palindromic arthritis. Well, I struggled with this, taking plenty of Advils for a few years until the rheumy thought I must have Lupus, although my blood work was atypical for that. He put me on Plaquenil, which worked very well on the joint pain. 18 months of Plaquenil later, and I developed a full body rash – and I mean full body. He sent me to a dermatologist who did a punch biopsy and pronounced that I had psoriasis. Changed my meds to methotrexate, which eventually got the rash under control. I still had intermittent joint pain but not as bad as before. Two nights ago I started having neck/shoulder pain that radiated down my left arm and scared the bejesus out of me until I realized it was a flare and not a heart attack! Took Advil and went to bed and it was OK the next morning. I kept asking him “Is it psoriatic arthritis, RA, Lupus, WHAT?” No one had any clear diagnosis, but as the dermatologist said, methotrexate would be prescribed for any of these conditions. That may be a good answer for him, but I want to know what’s really wrong and will my joints be affected in the future. I already have a couple of finger and toe joints that are definitely getting deformed. This is all so frustrating – none of the doctors agree about what’s wrong with me. I’ve taken methotrexate for 16 years and am getting worried about effects on my liver. And it’s time for another liver biopsy this fall. Sigh.
“Back in April, the Journal of Rheumatology reported that a long term study revealed that at least two-thirds of Palindromic Rheumatism cases become full-blown Rheumatoid Arthritis.”
This isn’t the same thing as saying that RA springs from PR though, right? This is simply stating that 2/3 of those with PR go on to have full blown RA.
It doesn’t say anything about the causes of all RA cases as they could manifest without ever having PR, correct?
Hello, What a great site firstly. I have never heard of pr before, but suspect this is what I’ve had for the last 6 years! I’ve had mri’s, scans and x rays, neck painkiller injections, pain courses, phyciatrist meetings,massage, acupuncture, hydrotherapy, natural remedies plus daily doses of various pills from the doctors.
Also seen a dozen Drs, not one has mentioned pr, they just say I will be pleased to know I don’t have limes, fibromyalgia or rheumatism! My pain is constant but has flare ups daily. I never thought I could suffer so much pain, but I have! Swollen hot joints all over, swapping sides even. I feel really sorry for all you fellow sufferers, but it does help me now, knowing I’m not the only one who thought they maybe going mad!
I just have to convince my dr now, so he’ll change my medication to something better. Tramodol and gabapentin at the moment. I was drinking oramorph regularly not so long ago, also having anger outbursts due to losing my tree surgery business, and my social life really. The only blessing is my great, understanding wife, who is now my carer! I’ve lost weight too, is this usual?
I recently added trying cbd oil and even smoking cannabis to my medicine cabinet. I’ll try anything to ease this horrible constant PAIN ! It helped a lot too, just too expensive to use all the time, so I now keep it to just weekends.safer and cleaner than tramodol, substitute heroin.
Well it’s been nice having a rant, hope it’s useful to someone else searching what’s altered their lives.
Take care folks. Chin up. Reply if pos. rscott1969@hotmail.com
Has anyone noticed a relationship to PR episodes and “times of stress?” I’ve had this since 1989 and typically put up with a couple episodes each year lasting for just a couple of days (ankles/feet). In 2010, I was going through a tremendous “life change” and was debilitated for 3 months – both ankles (instead of one). That was when someone finally took the time to diagnose me properly. Since then, I have noticed that episodes typically coincided with stressful life situations. The past three years have been very stressful and the episodes, longevity, and severity of pain have increased dramatically. I am now 62 and concerned that my PR has developed into full blown RA – because it never seems to fully go away anymore. Any thoughts/feedback?
I have unrelenting (24/7) RD now. Had PR / flaring RA/RD for ~25 years before that. In neither case did I notice that disease any correlation with stress—only physical activity (more = worse) and pregnancies brought worse flares. I have tried to “blame” myself or life experiences in the past but it just doesn’t add up.
Our immune systems are unique, which can easily account for our unique experiences.
Hi I have suffered With joint pain for 25 years. I had lots of mis diagnosis. Doctors were saying a had a frozen shoulder? My pain is constantly in my wrists fingers shoulders hips and knees. I have finally been referred to a Rheumatologist who has diagnosed me with Palindromic Arthritis. My last blood scores for CCP and Rheumatoid factor were well over normal range. It likely I will develop RA?