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☹️

I will admit before yesterday I hadn't. I am a nurse but a patient turned up with it yesterday. So I have had a little read up on it. Not met the patient yet but hoping they will be able to fill in the gaps of personal experience over text book descriptions and any self help groups and charities.

Iclav I'm in the UK.

How is PR diagnosed? I have chronic pain and inflammation in my hands jaw and hips which is currently managed with NSAIDs and opiods but it comes and goes and sounds a lot like PR. I have RA in the family so very aware of that but not heard of this before.

I found it really hard to get diagnosed.

When I first went to the GP explaining I had excruciating and unbearable pain in my joints, he was very dismissive. It was always one joint at a time, would come on very suddenly, go from 1-10 on the pain scale. If the pain was in my hands, for example, it’d be so bad I’d be unable to open or close my fist.

I remember I had to get someone to take me seriously when one night I was about to give my daughter a bottle made with boiling water and not cooled.☹️ Thankfully I didn’t, but the PR pushed me to the limit of my sanity.

I paid £200 to see a rheumatologist, it was a massive amount to me on maternity leave but definitely worth it to finicky know this thing I had, had a name.

As I said, I still haven’t found the right treatment for me as the things I’ve been given haven’t worked,

I really don’t want to take methotrexate, am terrified of it and the side effects.

Thanks to everyone who is sharing their experiences. It means a lot.

PA actually does damage joints rather than just cause pain and DH has been told to force his joints to move - so walk around even though it's incredibly painful, do hand clenching exercises etc which has helped. Everyone reacts to methotrexate differently lots of people on these low doses say they have non, DH just sleeps more than usual but he can feel his joints improving weekly. The first time he was only on them 6 months and I think that was 5/6 years ago and we're hopeful he won't have to keep taking them forever this time too.

TuscanMum I didn't mention food intolerances in my previous post, because it seems to be the current "answer to everything" and I didn't want to imply that it was a miracle cure.
But I definitely found that certain foods made the attacks more frequent. It took me a long time (15 years) to work it out though.
One summer I grew tomatoes, ate them every day, and had much more frequent pain episodes.There were other problem foods as well.
I eventually discovered that I can eat offending foods occasionally but if I eat them frequently it seemed to cause increased pain.

@MasonJar I've read lots about tweaking your diet helping reduce symptoms- if only DH could be bothered to give it a go! We had a family friend with Parkinsons who thought it was nonsense until he ate s load of "forbidden" foods one weekend and couldn't move for the following week. Our bodies are inherently holistic yet UK medical practices do not account for that all.

Methotrexate doesn’t cause side effects in everyone and if the pills don’t suit they’ll switch to self injections. I had to go through the rigeramole of failing dmards before I had access to biologics and as said above, they can be life changing.

Methotrexate gives me slight nausea the day after injecting. No thinning hair etc.
The nightshade group of foods commonly react badly to RA. When i eat potatoes i get a painful shoulder 30 mins later. Tomatoes, peppers and aubergine come under nightshade group.

Interesting about dietary influences. I am the world's greatest sceptic when it comes to food intolerances etc. However a friend of a friend with RA claimed that going gluten free had changed her life. I decided it couldn't hurt to try it. About a year ago I started a GF diet. It was a pain in the neck and tedious but I stuck to it religiously for three months. Nada. No difference whatsoever. Sigh. At least I tried.

I can't say I've noticed a reaction to tomatoes peppers etc but I eat them pretty much daily. Oddly though I have decided that oranges trigger my osteoarthritis.

I think with food reactions it is hugely individual- you need to do an elimination diet which is time consuming. If you eat tomatoes and peppers daily giving them up for 3 months would be required along with keeping a pain diary.

It's not that x or y affect it, it's your body reacting to food x or y that makes your immune system work harder that makes the affect on the arthritis worse.

Fake, gluten made no change to me. Caffeine irritates me so I use decaff coffee.
I recommend the book Eat To Beat Arthritis by Marguerite Patten. She says citrus can be a trigger.
I don't follow the book religiously but it's helped me nail my triggers. Some great recipes and she orders you to eat lots of liver pate!

@FakeMews it’s more likely she had coeliacs as well and that’s why she felt better. It’s not advised to go gluten free unless you are coeliac/ truly intolerant. I just don’t have the energy to go on some strict and restrictive diet. I try to eat well but I’m the first toad it, the fatigue crucifies me when it comes to cooking. And then the fact my hands are a bit stupid doesn’t help 🙄

To admit it not toad it, I have no idea what toading it involves

Hi

My nephew has been suffering with painful joints and other symptoms but no diagnosis for two years.

When he gets a flare up, big red patches like he's been scalded flare up also.

Is this an associated symptom?

He's had blood tests but I don't know if they would specifically test for this?

Thanks

@allthegoodnameshadgone sounds like psoriatic arthritis- there are different types of psoriasis lesions. There is no test for it, you rule out RA, look for psoriasis in extended family then it's just a case of having the symptoms

My DM has been on methotrexate, not for this but another autoimmune rheumatology disease.

Although she did eventually develop side effects and have to stop, it was like a miracle for her - it stopped her disease in it's tracks when she hadn't been responding before and it gave her her life back. The monitoring program she had from her trust was excellent as well.

Luckily she can manage without now, but even with her side effects she could have had it by injection instead of oral. It was a life changer for her so please don't be too scared of it.

Whilst I haven’t got it, I do have psoriatic arthritis. I am currently suffering a flare in my hands and feet so can totally sympathise.
Are you having any treatment at all? (this must be quite limited in pregnancy)

Queenoftheblitz
Are you starting Secukinumab?

I also see you are worried about methotrexate. I would say to go for it, it is a risky medication and can cause issues. However, it had made a huge difference to my arthritis and I have had hardly any problems on it. I would urge you to give it a try as they monitor you very closely and 111 will always see you out of hours if you are concerned on it

@NewKidontheblock I’m starting on sekunimab, are you on it?

I have it OP. not as debilatating as it was when diagnosed 4 years ago but now having to take metthotrexate along with other meds, as the flare ups while no longer as bad still persist and so stop me from working all too often.

My mum has had it from her early forties (late seventies now). She takes hydroxychloroquine and has learned to manage it well. Her flare ups are rare now but exceedingly painful and debilitating, usually brought on by a trip resulting in wrenching or jarring. Previously they were caused by over use but she’s wise to it now.

I’ve lived with it for 35 years. The one consolation is that it is non joint degenerative. I think it’s imortant to be aware of your limitations, as another poster said do not over use one joint. For example if I have a marathon window cleaning day, I often can’t move my shoulder the next day . So a little and often, with exercise, helps me .
I manage without pain relief mainly. I have discovered, by accident, that mefenemic acid gives the best pain relief.

I have it too! I was diagnosed 10+ years ago but still have GPs who have never heard of it. Mine's pretty good at the moment, flare ups are only once a month or so but it's impossible to describe how agonising they can be. It was at its worst after having babies, I would be crying in pain trying to pick up a baby and worried that my elbow would give way for example.
I don't take any medication for it at the moment, I've been on various things but actually don't find anything makes much difference so I just deal with it with painkillers and immobilising the joint. My attacks rarely last longer than 24 hours in one joint so I grit my teeth and know it won't last long. It's the stupidest, most random disease.

I have this too. Diagnosed 4 years ago but I first went to GP about it with first flare 30 years ago! I manage with ibuprofen tablets and gel at the mo. Alcohol is definitely a trigger for me. But when it flares its horrid. I also get a kind of general flu like feeling when I am inflamed. I’d like to try an elimination diet I think.