Palindromic rheumatism : I have had symptoms of... - NRAS

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Palindromic rheumatism

rwl89t1967 profile image
34 Replies

I have had symptoms of palindromic rheumatism for 7 years. It has come alongside a diagnosis of Wegeners vasculitis which I am being treated for. I see the rheumatologist a few times a year and severe, short lasting joint pain is always top of my symptom list. My rheumatologist never comments. So in the last few weeks I have done my own research and bingo, my symptoms fit 100% palindromic rheumatism. I feel frustrated that the rheumatologist has never identified it as this. I will ask at my next appointment but whatever she says I am convinced this is what it is. I just wanted to connect with people with PR, looking for tips or ideas as to what causes a flare. I went 3 years without a single joint pain, now it's back to normal with daily random pain.

34 Replies
vonniesims profile image
vonniesims

I had P R for some years, getting pain usually in one joint at a time, never on both sides at the same time and usually only lasted a few hours. I was given painkillers,Later I developed RA which I think often happens, and was asked how the PR was treated!

vonniesims profile image
vonniesims in reply to vonniesims

I found then as now processed meats and sugar tend to increase discomfort. Hope you can get this sorted

rwl89t1967 profile image
rwl89t1967 in reply to vonniesims

I love chocolate and I have wondered if my sugar consumption aggravates PR. I am beginning to recognise a link between sugar and fatigue which increases the episodes of pain. This should give me the incentive to cut out sugar and processed meat and see what happens. Your description of the pain being in one joint at a time. Never both sides and lasting a short time is exactly what I experience. I think it's linked to wegeners vasculitis which I was diagnosed with 7 years ago. I hope i don't go on to get RA. Thank you for replying to my post.

AgedCrone profile image
AgedCrone

I was diagnosed with  PR back in the 1990’s…within two years after a few flares it had morphed into full blown RA.Until your blood tests throw up something so that your rheumatologist can offer you a new diagnosis ….I understand PR can be the diagnosis for years.

vonniesims profile image
vonniesims in reply to AgedCrone

Yes, I am seronegative

rwl89t1967 profile image
rwl89t1967 in reply to AgedCrone

I've had this for 7 years. Would I have already progressed to RA in 7 years?

smilelines profile image
smilelines in reply to rwl89t1967

Maybe you'll be one of the 50% that have the PR that never damages your joints or progress to other inflammatory arthritis. 🤞😀

rwl89t1967 profile image
rwl89t1967 in reply to smilelines

Yes I hope so. I'm sure it's linked in with my vasculitis x

rwl89t1967 profile image
rwl89t1967 in reply to smilelines

Vasculitis is an inflammatory auto immune disease.

AgedCrone profile image
AgedCrone

I couldn't’ say, have you asked your rheumatologist ? I would have thought if you had you would have been told & put on some sort of DMard.

rwl89t1967 profile image
rwl89t1967 in reply to AgedCrone

I explain my joint pain at every consultation for the last 6 years. She never says anything. I also had a second opinion from a rheumatologist and he didn't say anything even though I've described PR ! I am already on DMARDS, so maybe that's why nothing has been mentioned. Maybe to avoid me thinking I'll eventually develop RA? When I see the rheumatologist in a couple of months time I will mention OR and hear what she says!

AgedCrone profile image
AgedCrone in reply to rwl89t1967

Well if you have already been prescribed a Dmard it’s likely your doctor does think you have some sort of Arthritis….they don’t usually prescribe DMards for PR.Ask your doctor straight out why are you being prescribed DMards, or ask your rheumy nurse to explain your blood test results to you…..

rwl89t1967 profile image
rwl89t1967 in reply to AgedCrone

I am being treated for wegeners vasculitis. PR appeared around the same time

Mrspainting48 profile image
Mrspainting48

Hi ...I was diagnosed with PR....when I was 34 I am now 74......I would wake with pain in one joint it lasted 24hours then went as it had never been....it gave me a break of 5 years....then came back full blown....

deforming my hands and feet.....then my whole body shape..

I worked untill i was 50 then had to retire.....i then became drug intollerant...

Now i have Full RA ...Oesteo....Fibromyalgia....Lymphedema.

I am in 24/7 flare with all four.....I have had not a day without pain.

I keep trying pain relief ...but all have not good side effects.....I dont sleep...I cat nap......my ability to preform as a human is limited......as a statue excellant....

The conslutant a Professer Martin at St James Leeds...told me I would be in a wheel chair by 60.....I got to 71.....

My opinion RA doctors depend on drugs and thier knowledge of RA and Fibromyalgia is limited.

They want to try me on Biological but cant as i need an op on my left ankle......

I would love some rest bite from pain....but no one seems interested to try me on any new drugs .

They just prescribe the ones I have had bad reactions to over and over...

Covid stopped my ankle op.

The knock on effects for me have been devastating......

In my early days of PR i was pretty uninformed......

I hope you research and question everything......I wish you all the control you can get......

My PR and RA is not in my family .

They say its viral.....

smilelines profile image
smilelines in reply to Mrspainting48

😔❤️

rwl89t1967 profile image
rwl89t1967 in reply to Mrspainting48

I am so sorry to hear how much pain you are in. xx

OldTed60 profile image
OldTed60

I may be wrong but I’d have thought that Wegner’s is such a serious type of Vasculitis that it is your rheumatologist’s priority to diagnose and treat over and above PR or even RA? Most treatments would cover both anyway. The problem is that inflammatory arthritis pain that comes and goes is inherent to many of these rheumatic autoimmune diseases including Vasculitis. But with the rare rheumatic autoimmune diseases, if we can get a timely diagnosis, then the more common autoimmune conditions such as RA and hypothyroid tend to be acknowledged but somewhat ignored by the doctors so we really have to flag them up ourselves - if they require a different treatment approach to the our main disease that is.

I have scleroderma and sjogrens and some type of inflammatory arthritis - initially diagnosed as RA for first four years although it was non erosive. I’m on dmard, max dose Mycophenolate, and meant to be starting Rituximab soon. I keep mentioning to my rheumatologist that my original RA symptoms seem to be returning now but my blood work is good and her main concern is my scleroderma gut. She did listen though when I described ulnar drift and has arranged first X-rays and ultrasound of hands in many years - but might be ages off I’m guessing. So meanwhile I’m on a mostly liquid diet and Ensure Plus and trying to avoid sugar like the plague.

Over Xmas and a big birthday at the weekend I slipped and ate sweet food and even drank some bubbly. Now my right ankle is playing up like mad so I can barely weight bear! I’ve self diagnosed PR as gout was excluded 2 weeks ago, and am getting my thyroid bloods run in an hour along with repeat liver bloods.

So the sugar avoidance with my paralysed gut are my own theory for sudden spontaneous joint pain too! But from experience it will come and it will go. The very stiff sore hands are more of a long term problem which is getting worse - but possibly OA and scleroderma connective tissue tightening for me - we will see.

I would hope you’d be on a strong immunesuppresant treatment for GPA/ Wegner’s though - or is it inactive now perhaps?

rwl89t1967 profile image
rwl89t1967 in reply to OldTed60

Yes you are correct about the wegeners. I am on immunsuppresants which I realise would be the same to treat RA or PR. I think maybe the rheumatologist wouldn't suggest I have PR because there is no other treatment and just causes concern that it will progress to RA? The sugar suggestion keeps coming up, I'm going to cut it out of my diet and see if it makes a difference. I hope your ankle improves soon. Thank you

OldTed60 profile image
OldTed60

PS because it’s rare i thought it might help to post a link so that people here know what Wegner’s is and can see how it’s usually treated: nhs.uk/conditions/granuloma...

“Symptoms of GPA (Wegner’s)

GPA can cause a range of symptoms depending on which parts of the body are affected.General symptoms include:

tiredness

high temperature

muscle weakness

loss of appetite

unintentional weight loss 

joint pain”

rwl89t1967 profile image
rwl89t1967 in reply to OldTed60

Thank you 😊

Sunshinereturns profile image
Sunshinereturns

Hi there, I can connect to what you say. I have both pallendromic rheumatism and RA.

I got RA first and it’s controlled by methotrexate. Pallendromic rheumatism was ruining my life and I was diagnosed with solely RA and my consultant couldn’t understand it. Last year was awful. I would feel pain coming on evening time and nights were horrendous. Pain lasted 24 hours. I had to drop a day at work.

New consultant, new diagnosis and I am so much better. The medication for PR is the same as for RA. I now inject top dose 25ml of methotrexate plus the game changer for me has been etoricoxib. It has stopped my pain where diclofenac couldn’t even touch it. I am so grateful to feel so well just now.

It’s miserable having PR but with diagnosis comes help. Go back to your consultant and ask for help saying you have tracked your symptoms and found a possible answer. Good luck (sending so much of it). It is so hard but help is out there. I’ve got my life back.

rwl89t1967 profile image
rwl89t1967 in reply to Sunshinereturns

Thank you. I had to give up my job 4 years ago because if the pain. Irs only now I realise the pain is related to PR and not the vasculitis. But saying that I think they are linked in some way.

Sunshinereturns profile image
Sunshinereturns in reply to rwl89t1967

You realising this could make all the difference. Push for medication to treat it.

All the best.

rwl89t1967 profile image
rwl89t1967 in reply to Sunshinereturns

I will , I see the rheumatologist in a few months. Thank you 😊

CagneysMum profile image
CagneysMum

Hi.

4 years ago I was diagnosed with PR following intense and sudden pain in my left shoulder that was initially diagnosed as a “frozen shoulder” … disappeared without trace after a few days. Then a few weeks later I had a similar experience in the top of my right arm “diagnosed as a “torn bicep muscle”. Then a few weeks on the fingers on both hands ballooned and became painful overnight which prompted a consultant review with a specialist who diagnosed PR. Again, the swelling disappeared after a few days. Told to return if any further issues, no treatment required. I was working under a lot of stress at work and had a bullying manager that I’d put up with for 2 years and I firmly believe this contributed to (or maybe even caused) it to trigger. I have no history of PR or RA in my family.

So then back at work full time and fully fit … but 4 months later whilst abroad on vacation over the period of 2 weeks a full body flare up in every joint developed and didn’t go away this time. It became so intense that once home I needed a wheel chair to help me remain mobile. I researched on the internet to find a new local consultant in RA (lost faith in the initial one) and arranged an initial private consultation to speed things up before moving to NHS treatment. It took 8 months to get my RA stabilised, trying various drug cocktails. I now regularly take hydroxychloroquin, methotrexate (gradually reduced dose from 20mg to 10mg) and a biologic… but I’ve had no real RA issues for 18 months other than occasional fatigue (in remission). I have no obvious visual joint deformity although I suspect the time taken to get my RA under control may have resulted in some damage to my ankles which are weak but not painful. Slow walking up/down stairs and over uneven ground/cobbles, but otherwise living a normal life. I returned to full time work but retired a year ago at 59.

rwl89t1967 profile image
rwl89t1967 in reply to CagneysMum

You mention your bullying manager contributed to your PR. I had a stressful job and think that definitely makes it worse!

CagneysMum profile image
CagneysMum in reply to rwl89t1967

stress is a huge contributor to the condition 👍

rwl89t1967 profile image
rwl89t1967 in reply to CagneysMum

If I'm in a stressful situation I can feel my hand seizing up.

CagneysMum profile image
CagneysMum in reply to rwl89t1967

Have you tried meditation or losing yourself in an audio book to give yourself some relief from it? Or an adult colouring book … I love it 👍

Beviejon1 profile image
Beviejon1

I’ve had PAL for 29 years.I once had a rheum you tell me it should go away once u morph into RA. It didn’t rhuemy I’m going to now tells me this is how RA presents for me

Grams2020 profile image
Grams2020

Recently diagnosed with PR....difficult to find info on it. I'm fortunate that I don't have many flares and my current tx is pain meds when needed. Rheum Dr. monitors me every four months for RA and Lupus as diagnosis could change. He also says to call him if my pain/swelling increase as my tx will change. Hoping I'm fortunate and my diagnosis and/or tx stays the same. Hope you get the tx you need. ❤️

Emma1188 profile image
Emma1188

I was diagnosed with PR about 4-5 years ago. Had knee surgery for alignment issues and after that started getting pain, redness and swelling in other areas too. About 2 years ago they changed my diagnosis to sero negative RA, however my consultant is now leaning back to PR, but my treatment is always the same. I take sulfasalazine and hydroxychloroquine. They feel my disease activity is low based on bloods and visibly checking my joints at 6 monthly appointments (sometimes 3 monthly), but I get freqnt pain in different joints, all joints apart from my elbows which are only painful in whole body flares. But I have been told after xrays that I have early OA in my hip, and wonder how that is if my disease is non erosive? I'm only 34 and normal weight, so it's not usual to have OA at that age without prior injury. I also have possible autonomic dysfunction now, being investigated for POTS. I'm always fatigued. Its hard getting info on PR, let alone a diagnosis, so I feel for you there! Good luck with getting answers! Auto immune diseases suck. That is all.

Wannabeabago profile image
Wannabeabago

Hello from Australia. I had PR for roughly a year, drove me mad trying to work out what was going on. My Rheumy agreed that’s what is was and then all of a sudden it became RA which is apparently common.

If you are not happy with your Rheumatologist, can you change to another one? That’s what i’ve done recently and am happy with the new one. Good luck mate!

rwl89t1967 profile image
rwl89t1967 in reply to Wannabeabago

Thank you for your reply. I hope you are feeling better now you have been diagnosed and treated?I am going to ask my rheumatologist about it when I see her next. I did talk about the pain to another rheumatologist but he seemed to be as mystified as my regular rheumatologist. I have wegeners vasculitis so that takes priority. But I'm frustrated that the rheumatologist has never suggested PR because my symptoms are totally as described. However maybe as I am already on DMARDS she doesn't want me to be concerned that I may develop RA? But I like to be 100% informed and to be that you have to ask the right questions!

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