RA plus something else

[Sunshinereturns]

Hi everyone and sorry I’m constantly looking for advice. I’ve just seen my consultant and my head is spinning.

I was all ready to up my medication from 20mg injectable methotrexate as I’m not stabilised. I’m in regular pain that is really impacting my life. However my consultant says this joint pain is not consistent with RA. That my RA is being controlled by the methotrexate and that something else is causing the pain. This has caused me considerable surprise and concern.

I don’t have any swelling and on a decent day have full range of movement. I don’t have fatigue unless caused by insomnia (not infrequent). I don’t have morning stiffness. Therefore he says methotrexate a success.

However I have very regular joint pain bouncing round my body - one day my right wrist can’t move. The next day two fingers on my left hand can’t bend with pain. Next day maybe fine. Mild knee pain the next day. Then perhaps excruciating shoulder pain so bad I can’t sleep a wink. It eases during the day and I have mild left wrist pain the next day. Fine for a few days then it may start up again. Could be my groin, shoulders, wrists, fingers, thumbs, knees…I don’t know what’s coming but it never lasts long.

He says I certainly have RA but that this pain could be caused by a virus (mentioned the dreaded long covid) or another condition. Getting blood tests to check for inflammation and mri scans on shoulder and wrist.

Would hugely appreciate any words of wisdom…

[Madmusiclover]

I’m sorry for all your pain. I never had classic RA symmetrical symptoms nor morning stiffness but I do have RA. Your symptoms certainly need investigation. Hope you get some answers soon. Sounds like your consultant is on the ball. Keep us updated.

[smilelines]

jeeez they seem to know so little about inflammatory arthritis. It sounds like maybe you don’t have RA but the type of arthritis that jumps around the body. Hope you get to the bottom of this and good information from your MRI’s.

[hatshepsut]

Sounds as if your rheumatologist is being thorough and exploring all options, which should be able to give you some answers. I'm not sure that there is a typical RA............we all seem to have a wide variety of symptoms!

Hope you get some answers soon. Take care, and do let us know

[Elmo333]

Google palindromic rheumatism. I have it and it sounds very similar

[Caza in reply to Elmo333]

I was just about to say this. It is what I have.

[Caza in reply to Elmo333]

are you on meds for it?

[Elmo333 in reply to Caza]

I take mtx and hydroxychloroquine because I am seropositive for all the RA. Markers. My official diagnosis is RA but currently “palendromic in nature”. A high percentage of people with PA go on to develop RA. The good thing is that it doesn’t usually cause permanent damage to joints. Lots of doctors have never heard of it but it is so unpredictable and painful when it flares up!

[Sunshinereturns]

oh it does sound like this!! Thank you! This is what I hoped, that someone would recognise what I was describing. How is it medicated? My consultant insists I definitely do have RA as well unfortunately.

[vonniesims]

Yes do consider Pallendromic Rheumatism I had it for some time before it turned into RA.

[Sunshinereturns]

Hugely helpful. So I can have it alongside RA? As already diagnosed and he says no possibility I don’t have RA. This sounds better to have alongside than the pain being increased RA, do you think that is correct?

[Elmo333 in reply to Sunshinereturns]

yes definitely. My consultant isn’t very interested in the PA, just says he would treat in the same way

[janmary]

I started my RA with palindromic symptoms aand although it ha become much more typical I still get random joints suddenly flaring up.

[Sunshinereturns in reply to janmary]

thank you. I’m one year in so that’s very possible.

[StormySeas]

Hi there

I started with palindromic RA

Symptoms that are episodic are always hard to diagnose because it's almost impossible to present with them when they're at their worst.

In terms of moving forward (whatever the diagnosis - and it might not be PA) I'd recommend that you start a symptom diary that clearly documents the episodes of pain, including duration and pain severity. Include photos of joints, anything that might help.

Your RA dept might have a nurses' phone line which you can call for advice. Try calling them and getting an on the day appt if you can actually manage to get there.

I know how hard it is to do anything when you're in such bad pain, but sometimes it's hard to convince medics if they can't see you in that state.

Of course your pain might be something entirely different, but seeing as you've already been diagnosed with RA I'd start there. Getting anyone to see you when you are at your worst is hard, but in my experience it was only then that my treatment was upped and I got my life back.

Good luck X

[Beviejon]

Ivehad PA and RA for 29 years.I can go days weeks even months with no flare. Mine is very much associated with weather. Up humidity down pressurs. Very painful!!

[Sunshinereturns in reply to Beviejon]

do you have medication for the PA, can I ask?