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Anybody with Palindromic Rheumatism out there?

Hi there. I've recently been diagnoses with Palindromic Rheumatism. I was wondering if anybody else has it or anything similar?

It would be nice to know there are others out there and if anybody has any info or tips I would very much appreciate it.

One thing I would be interested in knowing is if anybody has found any painkillers or other remedies for the pain. It's usually not too bad for me so I don't want to try any long term medications at the moment, but I will get the odd time when I really want some relief. I've tried paracetamol, ibuprofen and an ibuprofen based gel so far and none of them seem to help.

Thanks for any responses even if it's just to let me know I'm not alone. Hope you all have a wonderful day/ night. :)

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Hello

No, you are not alone! I don't have palindromic, but I have another type of arthritis.

For pain relief I take codeine and paracetamol. I've tried cox2 inhibitors, but the side effects were grim for me. I use ibuprofen, but only if desperate. I recently had a steroid shot, which help a lot.

I also swim and use a sauna. This helps too.

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You might find it helpful to discuss your medication with a pharmacist. They are very knowledgeable and I've always found very helpful. They will know the side effects of all the medications too. Picking an independent rather than a chain can often be a good idea too as they are more likely to have a regular pharmacist.

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I was diagnosed with this 5 years ago. The pain, when it hit, which was intermittent and usually in a different part of me each time, was excruciating and made me pass out on a few occasions. The only thing that helped the pain at all for me was Diclofenac but even then, not a complete remedy. Gentle heat was good and I found it was best to rest/immobilise the joint too and it then recovered in 24-48 hours but left me washed out for several days. I was lucky to be diagnosed quite quickly and started methotrexate, (and folic acid) which partly worked. My Rheumy told me that outcomes tended to be better if treatment was started early so I agreed to start mtx. Side effects were a bit grim for the first 3 months and didn't improve a huge lot even after that. After 18 months of feeling fatigued and generally not good, though the accute pains were rare, I saw a different Rheumy who added Hydroxychloroquin to my meds and, after 6 months of that, I started to get my life back. Mine has developed into RA - I was told some do and some don't - but it is fairly well controlled now as long as I measure my activity levels.

Good luck! I hope yours does not go to RA. All the best.

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Same as Gillbutler. Unfortunately l had a terrible rheumy at the time and nothing was done. I took voltarol which helped a lot. Rested joints with supports etc. I would recommend starting meds asap as l have already had one op on my hand for ulnar deviation and other hand now as bad. Must say the palindromic went on for 30 years but when my husband died it became RA after 6 months. Hope this helps or does it confuse you more? Hope not. Good Luck.

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I was diagnosed with acute palindromic serum positive RA about 6 years ago.I've heard it referred to as 'explosive' arthritis because it blows up so quickly and is so agonising , then settles after 24 to 72 hours (or longer if it's in a big joint like hip). My rheumatologist thinks that it is much the same thing and needs treating the same way as 'classic' RA and I've been on methotrexate since - I couldn't tolerate Hydroxy.

It has been reasonably well controlled after the first year or so with just palindromic grumbling joints, but still occasionally crops up as an acute thing. Typically, like last Wednesday afternoon for example, my right wrist and hand starts to swell and shooting pains start, and I know that I have to get home because by 7pm I will be unable to use or move my hand, and it will get worse until the next morning. Not worth even trying to sleep, the pain is so acute.

Nothing really modifies the pain at that stage but putting hand in warm water , sometimes running cold water over it intermittently, using a splint to immobilise it, trying distraction or 'zoning out'.

I'm reluctant to take painkillers as they don't seem to touch the pain and have side effects, but if anything Naproxen helps a little.

2 days on and my hand is still painful and 'fixed' in a claw, but I can use it a bit and it will be as straight as it ever is (not very!) by Sunday.

Like you, I feel washed out completely for a few days after an acute episode.

Don't despair though - it doesn't happen very often now, and if it recurs more a steroid jab from the rheum. nurse works wonders - I've only needed one in the last 2 years.

At least it's thought that palindromic doesn't damage the joints as badly as 'classic' RA

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I have had this for 24 years along with RA.My symptoms sound exactly like yours and yes nothing really helps the pain.I just thank God that the pain does go away as quickly as it comes on.

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I was misdiagnosed with RA six years ago, but in hindsight the explosive nature of flares around my body were palindromic - although it settled in my hands after 9 long months and I was diagnosed with RA and put on Methotrexate, having already taken steroids orally and tried Sulfasalazine. The Methotrexate saw it off after two years and my rheumatologist then declared my RA to be non erosive but I had realised already that it was Palindromic because of the sudden arrival and departure of so many flares. The next rheumatologist I saw changed this to polyarthritis (unspecified) and finally, last year, I was rediagnosed conclusively with Sjögren's and it's now listed as historic inflammatory arthritis.

I found Naproxen really helped, although I had to take Lansoperazole to protect my stomach - as otherwise suffered GERD and Gastritis. Unfortunately I'm extremely intolerant of almost all pain medicines, including Paracetamol, which plays havoc with my liver.

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I was diagnosed with palindromic arthritis about 18 months ago after having to see a Rheumatologist privately and being given hydroxychloroquine. This did work quite well for about 6 months, but now doesn't seem to do a great deal. I did have methotrexate for 6 months courtesy of the Respiratory Dept, which made a difference. I'm now back in the wilderness because the Rheumi won't believe that I'm no longer taking methotrexate (despite several letters for Resp consultant), and so won't change my drugs. I'm now back to being stiff in the mornings, my hips, feet, knees, ankles, SI joints, wrists and shoulders are horrible (sometimes separately but usually all together), and I don't have a clinic apt until June 2018. I guess I keep shovelling in the Zapain (can't have anti-inflammatories) and hope for the best. The most amazing thing is the transformation of the doc from incredibly helpful and concerned when seen privately to really not interested when seen in NHS clinic! I wonder why that could be LOL.

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I notice that difference any time I go private (luckily I'm covered by a family member's insurance at the moment).

My GPs think I'm a hypochondriac then I eventually convince them to give me a referral and turns out I was right all along or at least that it was something they considered worth looking into. I was so worried this would be a "nothing wrong with you. Go away" appointment, but as soon as he's gone through all my stuff he gave this diagnosis. He even said how it's one of those things a lot of people don't have taken seriously because of the lack of proof like swelling or blood markers.

I felt so validated. I'm not crazy after all!

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Thank you all so much. I was honestly so happy to see the number of replies cos I'm used to being quite alone in all my health issues. :)

Luckily for me things aren't too bad at the moment and usually the aches aren't bad enough to make me want painkillers or anything. I also don't get any noticeable swelling or hindered use of my joints which I am so happy about. Because of that my rhumy and I decided I'd hold off on medication (though he is happy for me to come back any time for him to prescribe it).

The aches do occasionally develop into pains though so I'm just looking for some short relief in those times. I will certainly be looking into some of the things you guys mentioned, including heat. I also plan to have a chat with my local pharmacist cos that sounds like a brilliant idea.

Oh and for those who wished me the best in it not becoming full blown RA, I don't have any of the markers that apparently show it's more likely so things are looking hopeful. Rhumy says I should have the same chance as any 'normal' woman does.

I was so shocked to hear some of the pain you guys have gone through with yours! It makes me really appreciate how minimal mine is. I'm not sure if that's just cos I'm early stages or if I'm the luckiest of the unlucky, but for now at least I'm going to be glad it's nothing worse.

Thanks so much for all your responses and advice. It really does mean a lot to me.

A couple of other questions if anybody wouldn't mind being extra lovely...

Do any of you also find that the aches/ pain aren't constant? Like they'll be there for a couple of minuets repetitively throughout a few hours or days?

And does anybody else get any aches or pains in areas other than joints? I'm sometimes getting pains more in the actual body of my leg (front or back). I did read somewhere that rheumatism can affect joints, connective tissue and muscles, but most places will only mention joints so I'm a little confused.

Thanks again and best wishes to all of you. :)

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Yes I've had the pain and swelling in my throat which is very scary.Also my jaw,couldn't eat.

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Definitely not alone.

I was diagnosed rf positive and anti ccp 168 with rheumatoid disease. MTX, hydroxyl, SSZ, oral and injected steroid all followed for two years but the drugs, which I took, on time and never missed a dose, did not deal with the pain or swellings or joint erosions etc. The consultant I had did not believe me that the pain could be so fierce, explosive and debilitating but it was truly agonising. One minute in my shoulder, the next day in my wrist, the next on my elbow etc etc , never knew where it was going to erupt next. When palindromic pain active I could not move my arm or foot of leg without manually picking it up with the other hand of someone helping me. It was like I had had s stroke. Involuntary screaming was terrible and frightening. The consultant suggested I saw a psychiatrist!!!!

For me it took a change of consultant to diagnose RD with palindromic symptoms and pain. I had never heard of it but it was the right diagnosis. I was put on Enbrel and it brought the palindromic pain under control. thd RD has caused lots of joint damage before being diagnosed properly but the new drug treatment has given me back mobility and a life.

I felt alone and abandoned by the medical profession until the change of doctor who had the knowledge and will to help me, he gave me hope where I had none,.

You are not alone, I would encourage you to speak to your consultant about the best treatment for your condition.

All the best BG

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Hi There... I was diagnosed 1 month ago with PR... I started taking sulfasalazine 3 weeks ago. So far I really dont see a diffrence.. My ankles are whats really bothering me, as well as my left buttock, and my left lumbar to rib area. The pain will flare up and down. I dont have stiffness, bit my ankles ache on and off, and the back pain really flares up and down in the middle of the night, making it really hard to get comfortbale and have a good sleep.. I dont feel myself, and I am really trying to stay positive, but its emotional. I had elevated CRP and ESR but negative CCP.. and a slightly high RF... My muscles are sore and achey, and the tendons around my joints hurt... Seems to bounce a bit from hips, to kness, to elbows.. But the ankels and the left back and butt are fairly constant... How about you? What are your symptoms... I keep thinking I have more RA than PR, but the rheumatologist knows best, so I will have to trust his diagnosis. Wishing you the BEST!!

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Thanks so much for replying. PR seems a bit rare (at least info on it) so it's nice to know my rheumy didn't just make it up. I'm finding it a bit hard to find anything on PR online- closest I can get is RA or rheumatism.

I was only recently diagnosed and have only been having issues for a few months, but my symptoms are mostly aches and pains that aren't really bad enough to do much about (I occasionally get a more serious flare). I'll usually have a bunch of little ones that come and go, lasting as little as seconds and then I'll have bigger flares in a more specific area (knees are popular). The bigger flares will usually be a more constant ache/ pain lasting up to a couple of weeks.

I also have some skin issues like mild eczema and irritated skin and hot flashes/ a mild fever kinda feeling that seem linked along with things like tiredness/ fatigue which is probably linked to this and my thyroid (hypo).

I'm just glad I don't get any swelling or anything. I don't think I really get much stiffness either. Although my legs do get pretty weak in a knee flare. I feel so old moaning as I go downstairs. :P

As far as I'm aware PR is a more random type of RA which doesn't cause damage so I think there's a lot of overlap in how it feels. Seems the main part is that lack of damage so I assume your rheumy didn't notice any signs of damage and that's why they went for PR. I think that bouncing you mentioned is also quite PR. I have a few sites it tends to bounce between and that's one of the things my rheumy asked about. I think RA may also show in bloods (?) which PR tends not to.

That's what I gathered from my rheumy and some research at least. I could be wrong.

Thanks again. Wishing you the best too. :)

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I was diagnosed with it about 4 or 5 years ago. There is a FB group that has about 1500 members all either diagnosed with it or supporting someone diagnosed with it. You can get lots of info on there. facebook.com/groups/1813529...

Arthritisresearch.org also good info on the condition. Its not as rare as you are led to believe - its more that it is under-diagnosed and because it isnt as common as RA, many medical professionals havent heard of it.

In response to you specific question, nothing over-the-counter will help when Im having a flare. I use heat or cold (depending on where the pain is or how it feels), sleep as much as I can through the fatigue and try to practice relaxation techniques which also help.

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I too have been diagnosed as having PR. In my case I find that if I lead a very limited life my joints are not too bad, but that the moment I start doing even moderate physical tasks individual joints in my fingers swell up after about 24 hours and then take days to recover. So for example using scissors to cut thick cardboard, using a screwdriver vigorously, or even just pulling hard on shoe laces when doing up shoes (all of which can strain particular finger joints) is enough to cause a bad reaction the next day which then disables me for days or even a week. The cause and effect of this I have checked several times but it seems to differ from the PR that others experience. I am currently taking HQ daily. Do others find this?

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Hi. Thanks for replying.

I tend to find that my pains are quite random and regardless of what I do (or don't) do I'll get pains throughout the day that last a few seconds to minuets. I also find that parts of me get weak or achy which is the part that I find affected by things I do. I don't get any swelling which I'm really thankful for.

If I'm walking at a bit too much of a pace or after already doing something to wear myself out I'll find it painful or straining like I've just come out the pool after a long swim or I've just gone for a run. That tends to get to me near the end of the day if I've been up and down stairs a few times. I also find that things like grating cheese can really get to my wrists. For me that usually only lasts as long as the thing I'm doing or a bit longer. Any lasting or post activity effects I get tend to be more generalised.

Energy and now overheating is a big thing for me. If I'm active one day (like going out for lunch and a little walk) I'll often be exhausted the next day and feel really worn out and heavy. I also need to sleep 12 hours every night and find that I'll have phases of being really run down.

Btw you might be interested in this. Somebody recently informed me of a facebook group for PR. I've found two, which you can find by searching "palindromic rheumatism). :)

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