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Autoimmune disease

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Palindromic Rheumatism / RA

7 replies

Perroi · 25/05/2025 11:59

I was diagnosed with PR 15 years ago which eventually migrated to RA.
It's all been well controlled for years with Hydroxychloroquine and Sulphasalazine.
Then last year I started having weird flares in individual joints, mainly hands and feet. Each last 24 - 36 hours and was intensely painful. The rheumatologist said if no improvement he would add in a low dose of methotrexate.
I've just had the worst experience ever. My hip flared up and was by far the worst I've ever had. I was completely unable to stand, walk, get into bed etc. All made worse by being abroad on holiday. It also lasted a week so far though on the mend now.
So Mtx seems inevitable and I am dreading it. I already have a rubbish immune system so struggle with infections.
Does anyone else have a similar diagnosis and did it help?

OP posts:
HelpMeGetThrough · 25/05/2025 16:10

I’ve been on Hydroxychloroquine and 25mg of MTX for 7 years. Only side effect is feeling a bit tired a few hours after taking my weekly dose of MTX and that’s it.

It hasn’t been enough on it’s own for me, so I have a Rituximab infusion every 6 months. That does flatten me for a week or so, but it’s a fair old size drip of that I have and takes a day in hospital.

My immune system is shot, but I just use common sense to keep myself from infections and have been fine.

Perroi · 26/05/2025 11:44

Thanks @HelpMeGetThrough At least treatment that flattens you is predictable, I could live with that. Do you have Palindromic Rheumatism and if so how often does it strike?
It's the unpredictability that's the worst thing. I can identify nothing that triggers it

OP posts:
HelpMeGetThrough · 26/05/2025 12:40

I don’t have Palindromic Rheumatism, I’ve got Rheumatoid Arthritis.

My flare ups can occur at any time in any of my joints. It mainly hits either my shoulders, elbows, hands, feet and knees, but I’ve had it a few times in my jaw. It has a couple of times caused my to have heart problems, but that fortunately hasn’t been too often. My joint flares can last anywhere from a couple of days to several weeks.

Perroi · 26/05/2025 13:09

Thanks. I have RA as well but my rheumatologist originally diagnosed PR and eventually (as usually happens) it developed into RA.
When I saw him recently he said the flares were palindromic. I have them in my hands, feet, toes, wrists, knees and hips, only one joint at a time though. Over a period of weeks I will get several attacks. Of course every time I see the rheumatologist I'm as fit as a fiddle...

OP posts:
Loafbeginsat60 · 10/06/2025 21:13

@Perroi I am seeing rheumatology on Friday as I think I might have Palendromic Rh - I get flare ups in my knees / toes and can't weight bear or lift my leg off the ground hardly.

It used to be about once a year but this year I've had one a month and now it's every week. Sometimes they drain fluid off my knees but the last couple times it has lasted a week then slowly got better on its own.

I'm 44 and this started after the birth of my daughter 13 years ago. I was fine until 2024 when the frequency started ramping up.

Does this sound anything like PR to you? I would like to be well informed when I see consultant on Friday. My GP is absolutely no use and I've been waiting 6m to see anyone - had to go privately in the end.

Thank you and so sorry to jump on your thread but you are the only poster I can find who mentions it on here

Perroi · 10/06/2025 22:06

@Loafbeginsat60 as I understand it the thing that makes PR different from RA is that the flares don't damage the joists and they are perfectly normal before and after the flares.
In my case it's usually one joint, most often a small one, wrist, toe, thumb. The joint swells and goes red, pain builds up over a few hours, peaks after about 6 hours and is very intense. I haven't found any painkiller that touches it. Then it subsides and is back to normal by 24 to 36 hours later.

My most recent attack was different though, it didn't go away.

OP posts:
Loafbeginsat60 · 11/06/2025 07:43

@Perroi maybe not then - mine builds up over a few days, peaks for a few then subsides. It's probably over in a week -10 days

But my joints are perfectly normal before and after and X-rays too.

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