Palindromic Rheumatoid Arthritis

[35395]

Hi. New to the site.

I am now of pension age and have had Palindromic Rheumatoid Arthritis for over 30 years and never come across anyone else with it.

Is there anyone out there with the same condition

Cheers

35395

[KittyJ]

I had to look this up, do you mean Palindromic rheumatism? If you put that into the search box and filter for NRAS then any posts about it will come up. I’m sure there are people here who have had it 🤞🏻

[35395 in reply to KittyJ]

Thanks Kitty

I have had it described as Palindromic Arthritis and Palindromic Rheumatoid Arthritis on my noted from Rheumatology. Confused of Manchester. Thanks for the advice

[rmros in reply to 35395]

I don't have it, but I know palindromic rheumatism can develop into full-blown rheumatoid arthritis. Could it be that you are in that in-between stage? My condition has been described in various weird ways at different stages as it morphed from one thing to the other.

[35395 in reply to rmros]

Thanks for the response. Fortunately it has not developed into RA but I am very mindful of its potential to develop. I guess I'm lucky at my age with over 30 years of PA

[Beviejon1 in reply to 35395]

I have both.

[AgedCrone]

I think you are fortunate to have remained with PA for so long.I only stayed Palindromic for two years…..then it morphed into full blown Sero+ RA….& that has stayed for 20+ years…luckily it’s well under control now on Rituximab.

I must say I have only heard of people who have either gone in to complete remission, or like myself moved on to another rheumatic or arthritic condition. …not someone like yourself. How often do you get flares? Has it had a very prominent affect on your life?

[35395 in reply to AgedCrone]

Hi. Its been a bit of a journey. I have had periods of remission only for PA to return with a vengeance. I am now on Methotrexate injection - once a week. Difficult to answer your question as it is very unpredictable - sudden and very painful and without warning disappears without damaging my joints. Difficult to plan anything. One day playing badminton the other cant get out of bed or hold a cup of tea. Fortunately my wife is my carer on bad days and my tormentor on good days.

[AgedCrone in reply to 35395]

I well remember those days…one day hobbling with a stick, then crutches then days later- waking up the next morning with not so much as back ache. I think the uncertainty of that over the years would be worse than actually being diagnosed with one specific condition.

I was diagnosed in my 5O’s & told by a dismissive GP, that “At your age you must expect aches & pains..,take an aspirin” Thankfully I ignored her & a doctor friend recommended a rheumatologist ….who diagnosed PA……with the projection of developing RA/Sjögrens in the future….& he proved 100% right…even now I have very little joint damage.

Luckily he passed me on to an excellent local rheumy when I moved out of London, who in turn passed me to my present rheumy 16 years ago.

I do think continuity is helpful when a diagnosis is variable.

Hope you get plenty of remissions ….I always hoped things would get better as I got older…but the same old problems just keep on popping up!

[35395 in reply to AgedCrone]

I can only describe PA as a Jackal and Hyde disease. One day you are in severe pain and clearly disabled in some form or another ( depending on which joint is affected) and on another day, you are living a normal life with only the mental scars of a tortured body as a memory and the anxiety of it returning soon and the prospects of an uncertain future.

[Beviejon1 in reply to AgedCrone]

for me the PA IS MUCH WORSE THAN MY RA.Inhad an awful flare last mouth lasted 2 wks. There were days I was fine then days I could barely move. The pain is horrible and literally nothing helps.

[AgedCrone in reply to Beviejon1]

I agree the pain I had my arms & shoulders meant I spent days in my pyjamas because it was too painful to get dressed..but then I’d wake up one morning without a whinge.

Once I was on a Dmard that suited me…it still happened occasionally, but since I’ve been on Rtx I haven’t had any repeats.

[Crossstitch1]

Hi....I am convinced I have palindromic rheumatism, but although my rheumy has been great with everything else I present with they seem to ignore it when I mention it. My uncle had it and was diagnosed almost by accident. Very rare so I guess many medical people including rhematologists never encounter it.

[AgedCrone in reply to Crossstitch1]

Have you asked your rheumy for a referral to a Rheumatology Professor who specialises in such variations? That was who I saw for my initial RA consultation, way back in the 1990’s & he diagnosed PA straight away..he even forecast how it would progress.

But to be perfectly honest…if you are now under treatment, on DMards or any other RA drugs you wouldn,t get any different treatment, You can’t stop & start when you have intermittent attacks.

[mickys1504]

Hi I have been diagnosed with this in the last few years as well as Osteoarthritis. I'm now 51 but feel 80 some days. I've been on methotrexate and Hydroxychloriquine for a few years now which has reduced flares massively. But Osteoarthritis is definitely ramping up. I need a new left knee( but told too young to replace yet) and recently had my right knee xrayed to be told this has started deteriorated too but not as bad as left yet. I was told for years right was painful just because of strain from left knee. I find most of my palindromic pain starts at night . Occasionally through the day. Usually a few joints affected at once. I seem to be coping with the palindromic rheumatism pain better than Osteoarthritis pain. They have me an anti ccp trail at hospital. Been on it 3 years now so regularly get seen and have tests run. I often wonder if they think it may turn into RA but I never get a straight answer. Ah well onwards and upwards.

[Beviejon1 in reply to mickys1504]

unbelievable how it starts late in the day and gets worse over night.

[AgedCrone in reply to Beviejon1]

This is from arthritis.uk..it sort of agrees everyone’s experience

Palindromic rheumatism (PR) is a rare type of inflammatory arthritis.  Between attacks of joint pain and swelling, the symptoms disappear, and the affected joints go back to normal with no lasting damage. Half of the people who have palindromic rheumatism eventually develop rheumatoid arthritis (RA), which does cause permanent joint damage.

Palindromic rheumatism affects men and women equally and typically affects people between the ages of 20 and 50. 

The cause of palindromic rheumatism is unknown, although a possible allergic origin has been suggested.

Symptoms……Palindromic rheumatism is characterized by sudden, multiple and recurring attacks of joint pain and swelling. Each episode may last from several hours to several days. The frequency of attacks varies, from one episode a day to several during a year. Usually two or three joints are involved, but different joints may be involved in different attacks.

The soft tissue around the joints may also be affected. After an attack, affected joints usually returns to normal without any permanent joint damage. The doctor may diagnose this condition after a complete medical history, physical examination and possibly X-rays. Laboratory tests may be ordered to rule out rheumatoid arthritis. No one test can diagnose palindromic rheumatism.”

[Peacox]

yes, me. I have it. I’m 52, Seropositive. Diagnosed with RA 12 years ago, then PRA 11 years ago. What I find strange is I was diagnosed with RA first! The PRA a year later. I’ve never come across this in anyone else as normally they say Palindromic will eventually turn into RA, but I already had RA! Very much so. Anyway, I’m on MTX (been on it a while but still makes me unwell, ugh) & Hydroxychloroquine. I’d be I retested to know if anyone else has been diagnosed with both?

[KittyJ in reply to Peacox]

can I ask how you differentiate between the two with regards flares?

[35395 in reply to KittyJ]

Hi. I’m not able to differentiate between the what ever I have ( whichbivthingvis P a this involves sudden and vey painful joints and tendons.

[Peacox in reply to 35395]

hi there, I suppose the difference is that the palindromic flare is totally random & can last only a day, & then weirdly appear in a completely different part of my body the next morning & then that will also last for a day. I call it my ambulatory pain 😀 So, the pain is terrible and really disabling but short lived & jumps about. With my RA proper a flare can last weeks, months, even years! Plus my disease is active so I have very stiff fingers etc & terrible fatigue etc. As it did from 2020-2022 when I had a terrible flare effecting my mobility (I couldn’t walk very well) & very bad healthcare & could not get to speak to anyone from my rheumy dpt! Long story.

[janmary]

I was diagnosed with PA 11 years ago , though had probably had it before that. I still have it in the background of more typical sero positive RA.

Fortunately my consultant recognised it as another form of rheumatoid from the start.

It makes you appear ( even to yourself) a bit bonkers because it appears in random joints so quickly and acutely. Hard to understand.

I seem to remember reading years ago that it could be associated with the fact that however severe a flare up my ESR is never really high.

[Bails67]

I was originally diagnosed with PA but then it was later changed to RA after 2 years my bloods started to show high levels of something ( not sure what!) I was on MXT and sulphasalzine but they stopped working and now I am Humira. I have always had visible damage to my joints so I don’t understand why I was even diagnosed with PA!

[Suzy-P]

I was diagnosed with PRA in August 2016 and so far nothing has changed. Luckily being Palindromic my joints don’t show much in the way of wear and tear. However saying that it comes on really quickly and I never know where and when it’s going to strike next - usually lasts 24-36 hours in a joint before it goes somewhere else. I take 20mgs of Metho and 10mgs of Leflumonide to keep it at bay but when it strikes I take 10mgs of Prednisolone daily until it subsides (usually 4-5 days). The majority of the time it’s pretty well under control 🤞🏻it stays that way. I have no idea what the future holds …..

[CagneysMum]

I was originally diagnosed with palindromic rheumatism following inflammation in my shoulders and hands which then went away. The diagnosis changed to seropositive Rheumatoid Arthritis only 6 -8 months later when I went into a full body flare up that just continued until the right drugs were found to control it. I’ve now been treated on this basis for 4 years and continuing.

[Grams2020]

I was diagnosed with this in 2021 by rheumatologist after 2 finger joints became swollen in 2020 and then disappeared. Routinely have blood tests check for RA and Lupus and inflammation. All negative so far. Not on any meds currently. No flares since original in 2020. No damage showed on X-rays which are done annually. I have osteoarthritis as well. Hopefully it doesn’t morph into RA or Lupus.

[Beviejon1]

I’ve also had PA for 30 years.

[StormySeas]

I have Palindromic Arthritis too

I was historically diagnosed with RA but for various reasons received no treatment.

A few years later I started suffering the debilitating symptoms of PA. Its sudden onset and the difficulty of seeing rheumatology (or even a GP) whilst symptoms were active meant that I spent a lot of time in unbearable pain. I have total sympathy with you as I found it difficult to conceive that pain like this could even exist.

I was treated with the usual DMARDs but continued to experience symptoms. It was only when I managed to turn up at rheumatology off my head on Tramadol and still in terrible pain that they actually saw how bad it was and started me on RTX, which has been a success.

RTX and a small dose of Methotrexate have made a huge improvement. I still get mild symptoms but nothing like the hellish episodes of pain that had me screaming in agony. I don't feel utterly ill and totally debilitated half the time. I no longer have to go to bed as I feel so systemically ill. Slightly overdoing it doesn't have the same effects and I can now make plans again. I feel very lucky that RTX worked for me.

Looking back I can see now that one of the issues that slowed down successful treatment was the fact that it's almost impossible to be seen when you're suffering a PA flare.

I couldn't even get to the hospital as it's an hour away. I did learn though that keeping a diary helped with pictures of every inflamed and red joint, the latter particularly important. Assessing pain and giving it marks out of 100 was useful. Anything quantitative assessments help - medics like marks out of 100 for things ie if 100 is worst pain ever and 1 is no pain, where would you mark yours.

Don't be afraid to say it's 90 or 100 if it really is. Also quality of life - it can be very depressing to be faced with regular and random pain and debilitation on that scale. You can't look after yourself or make any plans.

To deal with the pain I took Oramorph and Paracetamol, alternated. It didn't stop it but it took the edge off it. I think there is different pain relief available now but you have to balance it against the fact you're not in pain every day.

The main issue is to get symptoms under control. Fortunately I haven't needed pain relief like that for some years now.

Hoping you can get some treatment that will help you get your life back.

Best wishes

[Al1954]

When i first started i had palindromic arthritis then 2 years later i was diagnosed RA.But first it was palindromic