Palindromic rheumatism

[Moggie]

Hi all,

Can anyone help with, or as anyone heard of, the above. I am having tests at the moment for this condition and, from what I have now read up on, my symptoms fit exactly i.e. joint pain can be almost anywhere but more commonly in the knees or feet, it comes and goes with no rhyme or reason and is very painful.

From what the hospital has done so far (bloods and xray's) they seem to be suspecting this illness after listening to my symptoms. I gather, from what I have read, that this is an autoimmune illness and, as I already suffer with the autoimmune version of thyroid illness, it seems to be likely that my broken immune system is up to more mischief.

I have also read that it can possible lead to RA so thought I would ask the people that really know (the sufferers) if anyone else on started with PA and then went on to develop RA.

Thanks for reading.

Moggie

[AgedCrone]

I was diagnosed with Palindromic arthritis 22+ years ago.

My rheumatologist said it would either go away one day .... not to return, or it would develop, into RA.

Sure enough 2 years later My PA morphed into Sero Positive, ,Idiopathic Inflammatory Rheumatoid Arthritis.

If you Google NRAS.org.uk/ Palindromic Arthritis you will find lots of information.

I don’t know why everybody says the knees and feet are usually the first involved ....I didn’t have any trouble with those for about 10 years ....my initial diagnosis was wrists,elbows & shoulders.

As the articles say...if it doesn’t progress to full blown RA your joints usually return to normal without permanent damage.

I commenced Dmards immediately the sero+RA was confirmed and I have not needed any major joint surgery.

Let’s hope yours does just go away, but keep in touch with your doctors, & if it doesn’t......take their advice,& with the drugs available today things should go fine for you.

Fingers crossed it disappears.

[Moggie in reply to AgedCrone]

Thanks for reply.

I have had my symptoms for a few years now and RA antibodies are still showing negative - so here's hoping.

My pain is mainly knee (only the one) elbows (both) and hip (only the one) and I have been fobbed of by my GP for years as my RA results were negative. I then lost my rag with my GP and she relented and finally sent me to a rheumatologist who is now testing me for PA.

Have you noticed any foods that will cause the pain to increase?? I stopped eating gluten and dairy years ago which helped with my thyroid condition and am wondering if this condition could be caused or susceptible to certain foods. From what I have read so far they are all mentioning the word "allergy"

Thanks for the info link I will have a look and educate myself.

Moggie

[AgedCrone in reply to Moggie]

I was in my 50’s when I went to my GP with the aches and pains and she told me to take an aspirin & that I must expect aches and pains at my

Age. .Grrr!

Luckily I had a friend in the medical profession who recommended a rheumatologist I should see and within a month I had been diagnosed.

The sad fact of life is we really have to make a decision ourselves if we are going to stand out to see a rheumatologist of just accept what our GP says.I’m very glad I insisted on the rheumatology appointment.

One of the first things I asked the professor when I was diagnosed was should I avoid any foods and he said there was no clinical evidence that diet has any effect on rheumatoid arthritis ....maybe just avoid too much red meat. So I just eat shtick I like .....reasonably sensibly.

Many people do think diets help......and as long it isn’t too outlandish anything is worth a try.I have never felt the need to experiment ....the one thing that is known to be detrimental is of course smoking.

I hope you get some god results sooon.

[Moggie in reply to AgedCrone]

Thanks so much for the reply.

I never take no for an answer with my GP. Have had to fight long and hard to get what I needed thyroid wise and have been doing so ever since. I know that having one autoimmune illness means you are three times more likely to get another one but do the doctors listen!!! Unfortunately for them I do not give up and have been proved right time and time again with extremely low vitd, hypoferritinemia and many other things that can, and do, go wrong when your body decides to start attacking itself.

I have had to control my thyroid illness with diet and if I had not I would have been in real trouble now and doubt very much I would still be able to hold down a full time job so I bit the bullet and cut quite a lot out of my diet, which may sound harsh but it was that or remain very ill.

I have been told by the doctor at the hosp that if I get a flare up before my next appt I must phone them as they want to take fluid from the joint!!!!! What is all that about??

Moggie x

[AgedCrone in reply to Moggie]

Presumably they will analyse it to find out what is going on!

I had so many tests at the beginning of my RA journey I did wonder

“What the heck is that for”? At the time the eye test for Sjögrens was the most puzzling! I expect these days it’s probably a bit less Heath Robinson?

But I trusted my rheumatologist & all these years later I’m mostly doing OK.

As we keep saying ....everyone has their own RA journey...it’s not an exact science by any means.......but these days I think there is such a choice of drugs available, there is now a much better outcome for most people.

[Moggie in reply to AgedCrone]

So glad to hear you have a doctor you can trust and are doing o.k.

Must admit that on taking my blood test forms to my GP's they were puzzled with the tests that had been ordered saying "she has ordered some very unusual tests for you and we dont have the correct coloured bottle so may have to order them in"!!!!!

The only thing I can do now is sit and wait for those test results to come back and see what they say but, as I have read and had backed up on here, PA is not diagnosed through tests but symptoms so will be interesting to see what happens next.

Moggie

[AgedCrone in reply to Moggie]

Hi Mogggie......When doctors(who become GPS) are in medical school/ hospital training they only get a few weeks studying “Arthritis” & for most of them that is it....it’s not a popular Speciality, hence the shortage of Consultant Rheumatologists. So never be surprised at a lack of a deeper understanding of RA by a GP.

Also most of them have no interest & are very touchy if you (very carefully) contradict them on something you know 100% (from your rheumy) is incorrect about your diagnosis.

Over the years I have come across GPS who question prescriptions because they have never heard of the drug my rheumy has prescribed ....& it has taken weeks for them to agree to sign it.

Basically PA can be diagnosed by symptoms...but tests are very important to exclude what it is NOT.

Many people who have relied solely on a GP with just basic tests, have had their condition misdiagnosed & suffered the consequences......so go for every test your rheumy requests.

I hope you get your tests results soon........if they do suggest RA..... remember there are many & varied types of RA......so please bear in mind not to dive in to Dr Google & scare yourself needlessly.

Remember also - all the side-effects of drugs written about here happened to the writer .......there is no rule that says they will happen to you.

Fingers crossed the test results are useful for you & your rheumy

[Moggie in reply to AgedCrone]

Same thing with thyroid illness, but with thyroid illness GP's are only trained for SIX MINUTES!!!!! as most endocrinologists specialise in diabetes and not thyroid illness, so to find an endo that knows what he is doing regarding thyroid illness is as rare as hens teeth.

I fought for over 6 years to get my GP to even try to understand what I was saying and when I finally did manage to get her on side and realise that I knew what I was talking about she upp'd and left so am now back to square one with a GP that is reluctant to give me the correct blood tests or medication increase I need because I am "in range". She soon realised what I thought of NHS ranges. I find it strange that when they want to they will ignore a high range but when it suits them they will stick by that range through thick and thin.

It is down to my first GP (after months of nagging) that I was sent to a rheumatologist in the first place as I would not let it drop - personally I think she gave me a referral just to shut me up.lol.

Never thought about these tests being to rule out what it is not, so thanks for that.

Thanks for all your advice and help as there is no better advice than advice given from someone who is living with it every day and knows the pit falls.

Moggie

[AgedCrone in reply to Moggie]

I just go with the flow Moggie...have the odd strop, but Qué sera, sera & all that!

[Maureenbardram in reply to Moggie]

Hi Moggie , yes i suffered the same with Palindromic RA for a few years, its pretty much the same as full on RA except it comes and goes as you say, also it doesn't damage joints like RA. I used to get it at times where it would last days and sometimes a couple of weeks then disappear for months. My consultant put me on Hydroxichloraquine , then Sulfasalazine it was a great help, but had to stop taking them . A few years on and i now have full on RA, but that said it doesn't always happen . Hope you get your diagnosis soon ,take care

Maureen

[Moggie in reply to Maureenbardram]

Thanks Maureen, your symptoms of PA sound exactly like mine and you are left wondering why. How can your knee/elbow/foot be so painful one minute and the next be as right as rain.

Just got to cross my fingers and hope I am one of the lucky ones and it stays at PA and does not develop into RA.

Take care

Moggie

[Lyndy]

Hi Moggie yes that was my experience I am afraid... although I was reporting flu like symptoms as well as joint pain by the time they said it was palindromic. Mine started with foot pain and went to full RA in 3 years. The problem with this ‘intermediate’ state is that RA should be treated aggressively within 12 weeks of diagnosis (according to patient pathway) but deeming it palindromic means that you may not get that treatment.

Can I suggest you think about a second opinion? xx

[Moggie in reply to Lyndy]

If the consultant does nothing with me I will definitely go for a second opinion but let's see what my results are showing, although from what I have read PA is very hard to diagnose from testing so doctors have to go by symptoms and, unbeknown to me, I was describing PA down to a tee. Doesn't help that I was not sitting in front of a consultant, I was sitting in front of a lady in her final year of training, not that I am complaining as she did do a good job and found pain in my hands I never knew I had.

Thanks for reply and advise, the more advise I get from people like you the better equipped I am to go into battle if needed.

Moggie

[Caza]

My consultant treated my symptoms not my blood results. He’s treating me for PR/RD.

I’ve never found that my diet made any difference to my condition. I don’t smoke, I’m not overweight & I’ve always favoured the Mediterranean diet. For me it’s the right amount of exercise/rest & stress free. The stress free being the hardest to achieve.

[Moggie in reply to Caza]

Thanks for the reply.

I think bloods and xray's are standard and, like you, I will be diagnosed on symptoms alone but one thing she did say to me, which is not ringing true, is that PA does not turn into RA and, from what I have read, a third of cases do.

My diet is restricted due to my thyroid illness plus I have been a vegetarian for the last 40 or so years (my choice, nothing to do with illness) and since I have been dairy free, apart from eggs, I am vegan.

I have heard the night shade group of vegetables are not good for RA (peppers, tomatoes etc) but if I take things like that out of my diet I will be living off of thin air!!!!

Moggie

[vonniesims]

I had it for about 8 years before developing sero negative RA . I was just given pain killers. The pain flitted from joint to joint, not bilateral, but probably included most of them including my jaw.

When my hands and fingers became swollen , serum negative RA was diagnosed and the consultant said I should have had treatment, it was too late then .

Good Luck

[Moggie in reply to vonniesims]

Thanks for your input.

I was offered injections into my joints if needed (my elbow is very painful at the moment but, due to severe balance issues, I whacked it four times in one day on a door frame so I dont think this is due to PA but down to injury) but I am not one for having doctors suggest something and blindly accepting it as I have to do my research first and then make an informed decision.

What do you mean by "it was too late then" as from what I have read PA does not damage the joints, or is this untrue in your case????

Moggie x

[vonniesims in reply to Moggie]

He said I should have had treatment for the Pallendromic Rheumatism, but I didnt know that ' till I developed RA. I don't know what treatment or if it would have prevented the RA developing

[Moggie in reply to vonniesims]

Maybe it should have been the injections that she offered me?????

Moggie x

[vonniesims]

I meant to say that processed meats like ham brought pains pn within a couple of hours

[Moggie in reply to vonniesims]

That certainly will not happen to me as I haven't eaten meat for over 40 years.lol. So you have found certain foods can trigger a reaction yes???

Some of the literature I am reading is saying PA could be allergy related and from what you are saying this could be correct.

Thanks for that, I did tell the doctor that I was keeping notes as to what I had eaten when a flare up occurs but she just looked at me like I was mad!!!!!!

Moggie

[vonniesims]

I still avoid processed foods as the reaction was unmistakeable and eat little meat now

[Moggie in reply to vonniesims]

Trouble is, when you tell anyone in the medical profession that you are using diet to control symptoms that look at you like you have two heads.lol. They know that diabetics can control their illness through diet (which again is an autoimmune illness) so why not all autoimmune illness's.

Glad you have found a way to stop flareup's by staying clear of processed food. Like you I have to cook everything from scratch, which can be a pain but at least I know exactly what is in the food I am eating.

Moggie

[CagneysMum]

Hi. I was diagnosed with palindromic rheumatism after two episodes of a very painful shoulder but within 5 months I had a full body flare up and was then re diagnosed as seropositive rheumatoid arthritis.

[Moggie]

That's sounds awful. I hope I dont have one of those. Sounds to me, after reading some of your comments, that PA is a precursor for RA.

Thanks for your comment.

Moggie

[Beviejon1]

I've had PA for 26 years along with RA.Right now it's under some control with arava.For me the PA starts up when the humidity goes up and press goes down.Last year I developed graves.I have had PA swelling all over my body.Some of the scariest were in my throat.

[Moggie]

And there's me moaning about a painful knee, so sorry to hear of your health issues. Graves is bad enough on it's own let alone alongside PA and RA.

Thanks for sharing.

[Sparrowtracks]

At first, my symptoms moved around my body randomly and my doc suspected pa. But it soon settled into my hands, feet and neck and i was given RA diagnosis. Best of luck to you!

[Moggie in reply to Sparrowtracks]

Thanks for reply.

The more answers I get the more I am fearing that RA is coming my way.

Moggie

[Sparrowtracks in reply to Moggie]

My RA is very much controlled right now. PR was terrifying and crippling. RA has been much easier to treat and live with.

[Moggie in reply to Sparrowtracks]

Thank you very much for those reassuring words, yes the pain (when it hits) with PA is unbelievable and can stop you in your tracks so to know that RA can be managed better is reassuring.

Moggie

[Elmo333]

Hi. All of my blood tests are positive so my case was pretty simple and I was diagnosed straight away (it did take my gp 7 years to refer me to a rheumatologist though!!!). However, my symptoms are exactly those of palendromic rheumatism and it goes from joint to joint with no warning and is very severe. I take mtx and hydroxychloroquine which definitely helps. I’ve said to my consultant lots of times that I fit better into PA but he says it’s definitely RA because of the blood results but that everybody’s illness is different and some people with RA experience the symptoms of PA. confusing!

I’ve not found diet or weather to have any impact-good or bad.

Good luck!

[Moggie in reply to Elmo333]

Thanks for your input,

I dont think my GP was as bad as yours but it still took me a least a year of nagging to get her to send me to a rheumatologist. The symptoms you describe are exactly like mine, no warning just wake up one morning and elbows/knee/hip/feet are very painful (especially the knee). Rheumatologist doesn't want to see me for another 6 months, which I found strange, but said to call if I get a flare up and they will see me and take fluid from affected joint, dont know what that's all about but it doesn't sound nice.

Moggie

[TheBoys]

Hi

I had PA for about 10 years... every so often my two wrists or both shoulders would be in agony...then nothing. It would settle. The doc told me i might be lucky to stay like this or it could morph into RA... unfortunately, it did in 2018.

Keep an eye on it.

[Moggie in reply to TheBoys]

Thanks for the reply. I know the "nothing" feeling but you are still left waiting for the next attack aren't you??? Will certainly be keeping an eye on it but there doesn't seem a lot I can do really, going by the responses I have received on here.

Best of luck to you.

Moggie x

[TheBoys in reply to Moggie]

Take care too xx