Rising Rheumatoid Factor
Posted , 12 users are following.
hi,
Hi,
I was diagnosed as Atypical for PMR according to my blood work, but responded well initially to 10mg Prednisone 7 months ago. Now I have reduced to 7 mg (at 6 mg my pain was returning) but my recent blood tests show my rheumatoid factor and Corp have increased. Does anyone know what this means? I thought that rheumatoid factor being high indicated rheumatoid arthritis.
please help......
0 likes, 24 replies
veronica81435 Cyn1965
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Hi there , I would of thought your rheumatologist would of started you on a higher dose then that so you don’t get flare ups so quickly in some cases the disease can disappear altogether as the steroids burn it out. I was not so lucky as mines won’t shift lol. Yes rheumatoid factor in bloods show genuinely with PMR . It indicates inflammation and shows up in many auto immune diseases . There is no one blood test for arthritis. Hope your rheumatologist sorts you out soon. All the best 👍🏻
EileenH veronica81435
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"in some cases the disease can disappear altogether as the steroids burn it out"
Steroids have no effect on the disease itself - they are purely there for symptom management. PMR is generally "self-limiting" for 95% of patients and it will burn out eventually - but it might take a long time!
Cyn1965 EileenH
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I do remember my Rheumatologist telling me that the meds with control the symptoms and that the disease will eventually burn itself out. I just always feel like I am struggling - not major pain but annoying stiffness and fatigue. Is everyone else like this? Obviously at higher dose I am better but my doctor is VERY animate about keeping the dose low! So I always feel good but borderline like 85% okay....
Cyn1965 EileenH
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ptolemy Cyn1965
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It does sound as if you may be on too low a dose if you are having annoying pains. It really depends how bad it is. Most people are never lucky enough to have no pain. I have a high rheumatoid factor but the rheumie reckons I do not have RA. I also have a very low temperature and blood pressure. My brother reckons that I am on the wrong planet!
EileenH Cyn1965
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If you are stiff you probably need a bit more - probably not a lot. The fatigue is nothing to do with pred I'm afraid unless you are one of the people pred makes tired. The fatigue is due to the ongoing underlying autoimmune disorder that causes the symptoms we call PMR - just like flu in a lot of ways - and the fatigue must be managed by lifestyle changes, pacing and resting appropriately. And yes - really almost everyone has the fatigue problem.
Maybe the links in this post on another PMR forum will help explain:
https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...
Rheumatoid factor is a tricky one - there isn't a normal range as such. Some people have rheumatoid factor, others don't. You can be perfectly healthy and have a positive level, be negative and still have severe RA! Many doctors think that being more strongly positive is an indicator that at some point in the future you are more likely to develop RA. In which case monitoring makes sense - although taking medication "just in case" doesn't make any sense to me given how unpleasant some of the meds are!
Bethune Cyn1965
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Both my primary care and Rheumatologist believe the rate of non-remission PMR is closer to 30%. Maybe this is more true in the US
I’ve had it for 8 years with one 9 month period of no meds, and another 6-9 month period on 5 mg only. The rest of the time is on higher doses trying to get down..... very slowly. However, I generally feel pretty much symptom free and function very well playing sports 5-7 days a week .
Blood tests only tell part of the story.
EileenH Bethune
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Snap - I feel fine most ot the time although I've given up any sport now after injury and a few other factors made it a problem.
I find the 30% figure ?interesting - I think the 5% is too low too. Do they have any evidence for their opinion?
Bethune EileenH
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Michdonn Bethune
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EileenH Bethune
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If you see them - do ask them!
You did have a 9 month period with no meds - I had 5 years with no meds right at the start because they wouldn't/couldn't diagnose it. It never let up then and as far as I can tell hasn't let up since I went on pred! I'm perfectly happy on pred - but the rheumy is now getting itchy. He's already had me try methotrexate - but since his aim is not really getting off pred altogether I'm darned if I will put up with the side effects of the mtx just to get to get to a couple of mg less pred. It was not a pleasant month!
ricky23486 EileenH
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Cyn1965 ricky23486
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EileenH ricky23486
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Now you come to mention it - I have to agree with you! Though I think there are a lot of doctors in general with just a touch of the trait there are a lot of rheumies who seem to have honed it to a fine art! I wish I could get inside the head of a lot of them - they obviously wanted to be in a caring profession at one point but something went wrong and it is something that seems very common in the field. They seem either to be terrific or the other thing, nothing in between. I can understand getting a touch disillusioned with rheumatology - there are no cures and mostly you see the patient getting worse despite all your attempts to ensure otherwise. They fail to understand their role is to do the best they can to make life as livable as possible. But surely they knew that before they chose which way they wanted to specialise? It isn't just the NHS - it is the same in the USA too.
You seem to have found a doctor who knows what doctoring is about: Care, empathy - do no harm and improve QOL. Stick with her!
EileenH Cyn1965
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I would definitely look for another rheumy - being treated by a colleague isn't ideal under many circumstances (it can work, my husband wouldn't be alive if it were not for his colleagues getting involved but that was oncology!)
What dose are you good at? Have you seen this research?
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
7mg is definitely not really a problem on that basis - and if a couple more mg makes normal life possible - where is your rheumy's problem? (Yes, I know where his problem is!) It is all very well saving us for our futures in 20 years - but if we can't live now it isn't much use is it?
ptolemy ricky23486
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Michdonn EileenH
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Cyn1965 EileenH
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Bethune EileenH
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Bethune EileenH
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The female moved but her colleague is also understanding and has tried me on 5 or more different meds to help me get off prednisone. They didn’t work and she has settled in on letting me self medicate my amount of prednisone. I also have a bit of atypical RA and osteoarthritis, so they act up every so often. Now I’m trying to get down from 15... but I had had a flare and had to go up to 30...yikes! I was glad to get back to 15 quite quickly. but now it’s very slow... the good thing is my QOL is excellent. I’d rather be pain free and happier from 68-88 ( or less) than live longer miserable and in pain!!
Bethune Michdonn
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Nope😞 I’m on 15 mg a day right now.. but it works. Would like to get back to <10, but right now I’m stuck at 15.
Bethune EileenH
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Michdonn Bethune
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ricky23486 Cyn1965
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