Have you heard of Palindromic Rheumatism?

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.

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.

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.

@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.

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.

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.

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.

Iclav I'm in the UK.

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.

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.

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 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.

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.

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.

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!

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.

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

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!

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!

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 😂).

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

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.

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?

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