Have you heard of Palindromic Rheumatism?

[TuscanMum]

Also know as Palindromic Rheumatoid Arthritis

I’ve got it ☹️

It’s horrible and very, very painful.

Yet another night awake and unable to sleep with pain.

It’s an autoimmune disease and in my case triggered by stress and pregnancy.

However nobody I talk to has ever heard of it. Ever.

People might say, oh I’ve rheumatism in my knee/hand/elbow

Sorry for posting in AIBU but I’d love to know if anyone has heard of it. I’d love someone to talk to who understands☹️

Yes, I have heard of it.

I have RA, and mentioned this to a salesman when I purchased a bed. He in turn told me he had Palindromic RA, and, of course we started comparing symptoms, etc. We even shared a common rheumatologist. He had just started on a new biologic, as (I think) Humira had stopped working for him.

But, from what he told me, is that, although it is horribly painful when left untreated - as is my RA, it doesn't however actually cause the joints to deteriorate. I may have misunderstood him, or he may have been completely wrong.

I had my RA misdiagnosed by an incompetent doctor as OA because I didn't have Rheumatoid factors show up in blood tests. By the time I got an accurate diagnosis my knee joints had completely gone (double knee replacement) and I had physical distortion in my hands, elbows, shoulders, etc.

I can only recommend that you find a Rheumatologist you trust and get on some medication as soon as possible, as well as taking good pain killers. There are no prizes for being stoical, and being the most miserable person you know is not much claim to fame. Been there, done that. I became the sort of person who when asked how I was, would actually tell people. Now that's pathetic.

Sadly, when people talk about Rheumatism, I think they often mean OA which, whilst not much fun, is probably not a patch on the unremitting grinding pain and misery that RA can be. It changes you completely.

I know we don't have the same illnesses, but they are similar, and if I can be any help, let me know.

I have not heard of this type of Arthritis.

((((((Big Hugs))))))))))

A former colleague of mine had it.

In her case, she would have flare ups that were very painful and these would last few weeks. In between those flare ups, she was often virtually pain-free. She found that she had to be careful not to overdo stuff, and that stress and generally not taking care of herself would trigger an attack.

She'd previously had a job that was physically quite demanding and had changed roles because of her illness. She also had a fair few adaptations at work (special mouse, chair etc) that made things easier for her.

Apart from that, she was able to lead a perfectly normal life most of the time. She retired a couple of years early, but that was to care for her partner, nothing to do with her own problems.

Hopefully, when they've worked out what medication etc suits you best, you'll find it manageable.

Ive never heard of it, but i wonder if it is what my mum hsd.
Shexstarted having arthritis in her early 30s, firstly in her neck. She never had it perminantly but would have very painful flare ups, i remember once it affected her spine. She also had hearing damage diagnosed as arthritis. Think it started when she was pregnant with my sister.

There are so many different types of arthritis that people are unaware of this is a list of all the ones recognised by the arthritis foundation. It is also possible to have more than one type, currently I have four on the list. Large number of the the types are autoimmune.
The tricky thing is that even if you find someone with the same type their symptoms are likely to be similar, but not the same as yours and response to medication is very variable. I do not have Lupus, yet the medication which works best for me is a medication that is more normally prescribed for Lupus.

DH has psoriatic arthritis so also autoimmune and sounds very similar, how horrible for you DH currently back on methotrexate which makes him sleep an awful lot but at least it is helping.

I had it and it has now progressed to RA... getting ready to leave for work the now but will reply fully when i get there. Big massive gentle hug xx

My understanding is that it’s episodic but unharmful. Joints swell and are painful for a short while but go back to normal between episodes. No lasting damage is done.

Another one with RA. I feel for you are it can be excruciatingly painful. They think mine was triggered by pregnancy too. I had an acute onset that took months to get under control but I was diagnosed very quickly and had great medical care. I too have had a double knee replacement due to the severity of the onset but have been very lucky with my hands etc, they are in good shape. I've had it a long time but unless I told someone, they would have no clue as it's pretty much well controlled and my knee replacements have been brilliant.

Have you seen a rheumatologist? If not ask to be referred, there are some great treatments available. Hopefully you might be one of the people that palindromic RA disappears for . Wheat bag helps sooth the pain.

Thanks everyone who replied to my self pitying post!

I’ve had this thing for years now so you’d think I’d be used to it, it’s the sporadic and random nature of it that’s so difficult.

I think the weather is making it worse right now.

I am under the care of a rheumatologist and have been treated with, hydroxichloriquine, Sulfasalazine, steroids, naproxen and cocodamol. None of these have worked.

Rheumatologist wants me to stop all medication for ‘a few months’ as he can’t widk out why the combination of DMARDS aren’t helping.

My anti CCP level is more than 300 so I think that means I’ll progress to full RA which I worry about too. Although I couldn’t cope if it was more painful than what I have now.

My children are 3 and 5, i worry about their childhood memories of having a mother who was always in pain. 😢

Hi OP! My DF was diagnosed as having palindromic rheumatism, we hadn't heard of it either! The symptoms at the time matched but he's had/got a whole host of other symptoms so now we think he's got an autoimmune condition called relapsing polychondritis. 18 months on we're still waiting for a diagnosis and proper treatment - it's such a worry because it's having a huge part on him and he's lost so much weight it very frightening.

Autoimmune disease are awful and people who haven't even heard of them can't really begin to empathise. It's really rough OP, sending you

Sympathy OP. I was diagnosed with RA last year and people prattling on about osteoarthritis gives me the rage as it's completely different.

Hope you have a good rheumatologist?

I was diagnosed with palindromic rheumatism, swiftly followed by a diagnosis of rheumatoid arthritis.
Then I got better.
Would be really interested to know if this has happened to anyone else.
I'd had pains for years. Always just one joint at a time, excrutiatingly painful, especially at night, never lasted more than 2 days.
Then might not get any more pain for weeks/months and it'd be in a different joint.
Was referred to a rheumatologist when I got persistent shoulder pain. By the time I attended the appointment it had gone and I'd been pain free in all joints for over 2 months.
Was diagnosed with palindromic rheumatism.
Went for review appointment 6 weeks later to discuss medication. Bloods showed anti CCP was over 1000. Rheumatoid factor also high.
Dr said the PR had developed into rheumatoid arthritis and I needed to start methotrexate. I wasn't sure about this and said I'd let him know.
Eventually decided not to start taking methotrexate as I felt well and no joint pain for 4 months.
Rheumatologist wrote me a letter pointing out the risks of untreated rheumatoid arthritis and advising medication. Left it up to me to arrange another appointment if I changed my mind.
That was nine years ago. I didn't need another appointment because no pain or any RA symptoms in all that time and I feel fine.
GP said either I was misdiagnosed with RA, or had a spontaneous remission.

I had an episode about 12/13 years ago and it’s the most painful thing I’ve endured in my life-way more painful than childbirth. It worked it’s way round every single joint in my body.
The consultant gave a rough prognosis that a third of people will only have 1 episode, a third will have under 5 episodes and the remaining third will suffer on an ongoing basis.
You have my utmost sympathy=only gas and air touched the pain for me

Yes I’ve heard of it, I have PsA so I totally get where you’re coming from with the pain and sleep. You need to get on a good treatment plan and be very kind to yourself. Amitriptyline taken at night can help get a better quality of sleep, I need to take it every night to get a semblance of sleep but still feel crap in the morning (I’m between drugs atm so feeling very sorry for myself 😂).

Not Palindromic, but I also have RA triggered by pregnancy and feel that it might have been a good use of ten seconds in school sex education class to mention that was a Thing!

I have palindromic RA. It jumps from joint to joint. I take hydrochloraquine and naproxen. I also self inject methotrexate once a week. The methotexate has decreased the flare ups but i have some bone erosion in hands and feet.
My rheumy suggests i go on biologics. I always have a steroid injection when i see him - cuts pain and gives me energy.
At times the pain has been so bad I wanted a bullet to the head.
I would advise taking the strongest meds possible to stop the deterioration.
As mason says, ra can burn out and go into remission. Fingers crossed!

Just to add, rheumatism is a different disease to ra so people may get confused if you use this term.

I have it. My Rheumatologist calls it the anti chamber of RA in that most people go on to get RA. He refers to it as Palindromic Rheumatism. He also reckons that a serious virus years ago could be a factor.
I get a flare which causes joint pain in my hands, elbows, knees and toes for a few days followed by fatigue. In between flares only my fingers are affected and other joints are fine.
Mine has been well controlled by Hydroxychloroqine for two years. However Rheumatologist now thinks it's progressed to RA.

Interestingly I had always had joint pain with PMS but this stopped with the menopause until the PR started.

Checking in with RA here. Reasonably recently diagnosed (November) and been taking hydroxychloroquine since 20th December.

The unbelievable pain and that I experience in my hands and shoulders is awful and you're right, unless you have RA or any other autoimmune disease, people don't really understand. It's not their fault, I knew nothing about it until I was diagnosed.

I started telling people every time they asked how I was, just through the course of a day, but it gets a bit dull having to then have a conversation with people about it, who all have very good ideas about how I can make it go away or tell me they've got OA so they can sympathise!

I don't bother now. I just say, 'yes, I'm fine', whilst trying to move around through the pain in my feet. It's constant.

These my favourite memes at the moment, but I daren't post them anywhere, because people think I'm being dramatic!

My experience is that they prescribe the least toxic meds to start with. If that doesnt work after a few months they prescribe something stronger. So it meant that the first year was the most painful as various meds were tried and failed.
The most important thing is to stop the ra getting worse and destroying your joints so dmards are vital.

Ask about Nabumetone Tablets a non-steroidal anti-inflammatory drug (NSAIDs). See if you can have them prescribed after your pregnancy. They start to work in a couple of weeks sometimes sooner.
Doctors are sometimes discouraged from prescribing it because it is more expensive than other anti-inflammatory drugs like Naproxen.

Have your vitamin levels checked especially Vit D

Hope the pain eases soon.

Queenoftheblitz My experience is that they prescribe the least toxic meds to start with.

My rheumatologist told me that it's for pragmatic reasons that the government (I'm in Australia) insists that you try a couple of different medications (like methotrexate) for a reasonable time. They may well be effective, and are a reasonably priced solution. If they are found to be ineffective in controlling the RA, they then allow the use of a biologic through Medicare because most of the cost, approx $1600 per month, which has actually just been negotiated with the manufacturer down from $1900 by the government, is born by the health system.

I must admit that I found the biologics to be life changing in controlling the disease. My main problem, as mentioned above, is that I have suffered a great deal of physical damage before getting a correct diagnosis. After I had my knee replacement, my ankles, which had never given me any trouble, began to play up to the extent that I thought I would be in a wheel chair in a couple of years. Within two months of starting Humira, that ceased. I'm never going to be as spry as most people my age (or even my considerably older cousin who still backpacks at the age of 77), but I no longer have to live with constant throbbing, grinding pain, and joints that feel like they are radiating the heat of a really bad case of sunburn.

Actually, I should touch wood as I say that, because I have heard that occasionally biologics can stop being effective over time. I find Nemesis is often waiting to bring me down if I tempt fate.

Iclav thanks for that info. I have to be checked I don't have TB before they put me on biologics. I really need to stop this from getting worse.

Queenoftheblitz: I have to be checked I don't have TB before they put me on biologics

Are you in Australia, as well? I also had to have a chest X-Ray to check for TB, as it was not uncommon for people my age to have TB, and for it to be dormant, and never to have suffered from it. However, a biologic apparently can activate dormant TB, I suppose as it depresses your immune system.

Australia was a destination for people with TB as the climate was supposed to help it go into remission. I remember as a very young child the government carried out mass testings to screen for people who had come into contact with it. Adults were supposed to have X-Rays every couple of years. Thankfully, it worked.

Additionally, I have to have 3 monthly blood tests - down from monthly.

Still, a small price to pay, I suppose.