Rhumatiod arthritis: Hi all my GP mentioned that... - PMRGCAuk

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Rhumatiod arthritis

valrene profile image
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Hi all my GP mentioned that you can get Rhumatiod Arthritis from having pmr has that happened to anyone on here, thank you for any replies.xx

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valrene profile image
valrene
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21 Replies

I have the Rheumatoid Factor but no signs of RA 🙏

valrene profile image
valrene in reply to

Hi MrsNails did you have the Rhumatiod factor at the start of pmr.

in reply to valrene

Hi

It must have been about 9-12months that the Rheumatologist decided something else might be going on so he did a batch of bloods & that was when it showed RF+ they always check my hands at clinic but there’s no evidence at this time however l have been on Methotrexate twice & the plan is l’ll be recommencing MXT again next week.

MrsN

PMRpro profile image
PMRproAmbassador

No you can't, PMR and RA are different disorders affecting different tissues and one doesn't cause the other and, as far as is known, doesn't morph into the other although you can have both at the same time if you are really unlucky! PMR/GCA affects the blood vessels and soft tissue around the joints but doesn't cause damage to them, RA is a disease of the joints and can cause damage when not treated.

What CAN happen, and possibly happens to as many as about 1 in 6 or so of patients, is that the initial PMR diagnosis (usually by a GP but not always) was incorrect. RA can appear at first to be almost identical to PMR without any specific joint pains. Specialists call it "seronegative RA with a polymyalgic presentation" which means you get muscle symptoms but the blood markers don't suggest RA to start with. Sometimes it can be a long time before any joint erosion occurs. in the case of LORA (late onset RA) there may never be any damage to the joints at all.

Lochy profile image
Lochy in reply to PMRpro

And seronegative RA means you don’t have the RA markers? Can this change? My rheumatologist suggests I’ll remain negative for RA. Have been tested twice in 3 years I’ve had PMR.

Is seronegative RA just a form of ‘inflammatory arthritis’ ?

I’m still trying to get to the bottom of my swelling/sore left knee!!

PMRpro profile image
PMRproAmbassador in reply to Lochy

Seronegative just means there are no changes in blood markers - some doctors don't "believe" in seronegativity even when the world experts define some diseases with or without bloods. RA is an inflammatory arthritis - whether the bloods they look at show it or not. The evidence is found by imaging the joints and finding erosive changes.

I have a sore right knee at times - but according the most recent x-ray it is now just soft-tissue damage from a fall, a previous x-ray had shown nothing at all either but the pain had been different. PMR does make our muscles and soft-tissue more prone to damage - even turning your body awkwardly with your foot firmly planted on the floor can cause damage. Knees don't get a lot of rest so take some time to recover. This has taken the best part of 6 weeks!

Lochy profile image
Lochy in reply to PMRpro

So perhaps requesting some sort of imaging might help? Have had some ultrasound done at some appointments but has just shown swelling.

Hard to rest our knees especially when I’m on holiday way south of you in Lecce basking in 34 degrees! ☀️😓

PMRpro profile image
PMRproAmbassador in reply to Lochy

Too warm ... I'm in the shade (like most locals here) in the upper 20s when it is sunny (which makes it 40-ish in the sun). Hovering at the 27/28C level this week, nice in the mornings though.

I had a stabbing sort of pain in it about 18 months ago and the GP sent me for an x-ray as it is the worse damaged knee historically. No sign of OA at all though. Doesn't cure the pain - but at least you have an idea of why it might hurt if they find something!!

Lochy profile image
Lochy in reply to PMRpro

My X-rays also haven’t shown any signs of OA. My knee just seems to like to swell and ache for reasons we can’t establish. Still believe I have PMR with unusual large joint presentation! Have started full 20mg dose of leflunomide last week after gentle start of 10mg daily. Wanted to ensure my liver functions didn’t rise. Actually they’ve been lowest they’ve been in years!

Suppose the leflunomide should cover any potential RA? Currently successfully tapered to 8mg and other PMR pains appear to have gone. 🤞🤞

Hope your knee settles down. It is rather annoying having another ache to deal with.

valrene profile image
valrene in reply to Lochy

Hi Lochy same for me 4years on pred and 2years on Leflunomide pain, stiffness and swelling in knees after I started on 20mg of Leflunomide never have any pain or swelling at all now, have been off pred for 8 months, still on 20 mg of Leflunomide but I continue with no pain or swelling in knees or any where else in my body, all markers are normal and my liver enzymes are normal.

Lochy profile image
Lochy in reply to valrene

Hi Valrene, so you were originally diagnosed with PMR and successfully took prednisolone? When did the sore knees start?

I felt I had classic PMR to start 3 years ago. Very painful arms, hip girdle, struggled moving. Last summer the knees started aching and swelling. Now it’s only the left knee.

Did adding leflunomide reduce your knee swelling and pain?

valrene profile image
valrene in reply to Lochy

Hi Lochy I woke up one morning 4years ago couldn’t get out of bed, my knees ankles and feet were swollen couldn’t stand on them eventually manage to shuffle to the bathroom, went down stairs one step at a time and going up, had to go out walking the dog, managed to get them moving after an hour or so, drove about 45 mins couldn’t get out of car the other end, had to swing legs out of car then swing them for awhile until I could stand, walking was a nightmare knees would lock awful pain in knees, phoned Gp for appointment same day, after numerous blood tests Gp sent me to see a Rheumy, he said it was osteoarthritis in knees, had x-rays went to physio for exercise they said couldn’t do anything for me no sign of osteoarthritis as it was all inflammation, waiting for another appointment started getting pains in the rest of my body, finally diagnosed with pmr, after 3 days on pred no more pain anywhere. After 2 years knees ankles and feet started swelling again still on 5 mg pred, Rheumy tried methotrexate but pushed my liver enzymes u so went on 10 mg Leflunomide a few months later went on 20 mg within 10 weeks all of the swelling all over my body including knees went away never to return that was 2 years ago, have been off pred for 8 months still no swelling of knees, read a post the other day about all the areas you can get pain with pmr it said very occasionally people have pain and swelling in knees and wrist with pmr, not sure what some Rheumys think of this think they read different articles to us, hoe I have been of some help to you.

Lochy profile image
Lochy in reply to valrene

We sound as if we have very similar stories apart from I haven’t tried mtx because my liver functions were already high.

I’ve got my fingers crossed that I respond favourably to leflunomide and it sorts my knees out 🤞

Thanks for your story. It’s always good not to feel alone.

valrene profile image
valrene in reply to Lochy

That’s ok Locky hope you have success with Leflunomide, my liver has been fine on it for 2years, did have awful pains and diarrhoea to start with for about a month but persisted,pains stopped until it was upped from 10mg to 20mg only for awhile then stopped again, so fed up with all the swelling in my body after about 6 weeks I just seemed to shrink not had any more pain or swelling at all, hoe it works for you.

valrene profile image
valrene in reply to PMRpro

Hi PMRpro I felt the same before pmr was diagnosed Rheumy said it was OA physiotherapist looked at x-rays no sign of OA it was inflammation, can’t believe so many people have the same symptoms but nobody can give us a definite answer xx

PMRpro profile image
PMRproAmbassador in reply to valrene

Half the time it is because they have preconceptions - and don't look to see if they are right.

valrene profile image
valrene in reply to PMRpro

Think they don’t have the time to investigate further, feel we can’t all be wrong when we have the same symptoms we know are body more than they do, as they haven’t really got an answer to pmr how can Rheumy's dismiss are symptoms so quickly.

SheffieldJane profile image
SheffieldJane

If it happened to me I would suspect that I had been misdiagnosed with PMR because the diseases present in a similar way and RA can be definitively diagnosed. I am prepared to be corrected.

Blackcat1M profile image
Blackcat1M

Yes I have got it , it started two years ago, I have been on pred four years now.

Blackcat1M profile image
Blackcat1M

Also mtx as my hands are what I call nobbly, I sometimes think they are not sure which I have, as I had all the symptoms of pmr, could not walk as my hips did not want to, neck etc and my bloods were high, last year one of my bloods were 47, now <5,

Sue_n profile image
Sue_n

Yes, sometimes if you have one auto-immune disease you can get another one. I was diagnosed with seronegative R.A. which they took a long time to find, thought I was going totally round the bend at one point. The problem with this one is it does not show any inflamation markers. The good news is that the disease has at least been halted, and am now off preds. This forum has been brilliant, and I thank everyone for the good humour. Need a chuckle to keep going.

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