I thought i would share this, as I'm sure my obsession with understanding this disease is shared by others on here.
So, I have never had abnormal ESR or CRP tests. They've always been within normal range, even when I was first diagnosed and couldn't walk.
My GP has finally agreed with me, that for me, these tests are not an indicator of disease activity, as my hands and feet are still visibly swollen. He's written it in my file and is contacting my consultant to express this view. He acknowledged that sometimes to get things done, you need to be "tenacious".
Equally the second opinion I was fortunate to able to get from an American Rheumatologist who is considered best in his field made the following comments (these are specific to my case, but I'm sure will apply to others on here.) "Controlling the inflammation of RA is important in preventing the joint damage that occurs due to RA. However, the fact that anti-CCP antibodies are present puts her disease in a category associated with likelihood of joint erosion. That the inflammatory markers are normal is a good sign and makes significant joint damage less likely but that she has continued joint swelling indicates that there is still synovitis. Synovitis is the swelling due to the presence of inflammatory cells in tissue around the joints. It is those inflammatory and immune cells which cause damage to joints and bones." The long and short of this is that despite my excellent blood results the swelling I still suffer from means that I am still in danger of joint and bones damage and my current drug mix isn't on top of the RA.
So for me, I will continue to be "Tenacious" until my RA is in Remission.
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This is interesting Alice.
For me things are the other way around. When tested a year ago I had a negative anti CCP despite a low positive RF and it was only because my ESR was still pretty high and my CRP was also significantly raised that I had any attention paid to me really. I have had swollen fingers and knuckles and the odd hot and swollen joint but really hardly anything visible at all. I guess this puts me in the mild category now as even the pain is very little and mainly in my hands. And yet my ESR is still up at 54 despite having taken MTX for ten months and Hydroxy for 5 months. I am told by my rheumy that this isn't something to focus on and my GP says the same - but my rheumy also said he wouldn't be happy for me to take any less of the DMARDs than I'm currently on because of it so I guess they are covering their backs in case there is active inflammation and the ESR is telling a story?
I find it very confusing and I try to believe that the ESR is unimportant and doesn't mean I have underlying inflammation but it does niggle at me sometimes I admit. Does the irrelevance of these markers for some RAers mean that these markers are irrelevant and misleading for everyone I wonder? My rheumy says it's important to treat the patient not their blood and I agree but when I read of conditions such as Lupus where visible inflammation is often non existant and the destruction is going on in a more internal I start fretting again. We are all different and I would agree about being tenacious but I need to know what exactly constitutes remission before I know whether I'm in it or not?! Tilda xx
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Hi Tilda, From what I gathered on my last visit to consultant that remission means, when the body starts to repair itself. He said the longer that I am on the present treatment, will mean the body will begin to heal itself and this was where he wanted me to be. I took that to mean I would then be in remission without the actual word being said.
My understanding was that if you do get changes in ESR then it IS significant - its just that some folk don't get changes. I would be wondering why you aren't being offered anti-tnf drugs to see if they bring your ESR down further, because if you do have obvious inflammatory markers circulating in your blood there must be something uncontrolled going on.
Hi thanks Earthwitch this is what I'm getting at too - I do get a bit fed up with everyone just dismissing my high ESR counts as meaningless but at the same time telling me that I can't drop any further on MTX or call myself in remission until they drop?! I don't feel nearly serious enough in terms of RA pain to warrant being on anti-tnfs yet and they haven't been offered although another GP to my own did tell me that my GP felt that was the most likely outcome in the end. But he's never mentioned this to me if this is what he thinks! Tilda x
I have always thought that looking at your lumps and bumps, as I call all the inflammation is abetter indication of what is going on with the swelling. The blood tests may tell a different story for white cells etc. but not necessarily on swelling.
But some people with RA don't show up with lumps and bumps Georje just as some people don't show inflammation in their blood? i know this because I asked on here over a year ago when my RA first raised it's head and quite a few replied saying that they had never had visible swelling but still had RA.
That's interesting. I asked my consultant what would constitute remission. She said no visible swelling in any joints, and this would seem to fit with the the idea that the synovitis fluid needs to be present for bone and joint erosion to occur. I would be interested to know how many people have sustained bone/joint erosion when they've never had any joint swelling.
But I dont mean those with no swelling around their joints Alice I mean those whose swelling doesn't show much or at all. Just as some people show up as blotchy when they cry where others are just dewey eyed for a while - some people had red hot joints with clear swelling where others show very little but if you ultrasound their joints then there is clear inflammation. I've told he story too many times of my sons with broken wrists - both of whom week's dismissed initially because of lack of visible swelling - but when finally x-rayed they had sustained full breaks. This is why inflammatory markers and ultrasound exams are important for some people because otherwise there is no evidence of inflammation. I might be wrong about this but if I am I don't know why someonike me would have been put on MTX and Hydroxy.
Some bruise easily, some swell visibly and some have high ESRs where some don't. This is presumably what makes rheumatology such a complex field? Tilda
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Sorry about all the dodgy spelling I'm using my iPhone!
I want to know more about my disease, possibly a lot more. It seems essential. Apologies if you've read my blog about this or other references to it but x-rays 3 and a half month apart showed that a whole lot of damage occurred in my knees in that time. (Exactly how much is one of the areas I want to be much clearer about.) My Rheumy seemed to think that the speed at which it happened was faster than he'd expect for RA or PsA. However they were extremely swollen and had been for quite a while which might partly explain it. Your American Rheumy does seem to explain why Rheumatologists are so obsessed with swelling rather than painful but normal looking joints.
I can absolutely see why you want to 'get things done' to reduce the risk of damage. Let us know how you get on.
My Rheumatologist made a point of saying that the current swelling of my knees (not as bad as it was) is the synovial tissue, not fluid. So if your American Rheumy is correct I should not be at great risk of further damage just now - thanks for the info!
The woman who runs the 'RA Warrior' site complains convincingly about Rheumys dismissing 'unimpressive' swelling. She writes that as she is naturally very thin, joints which she knows are swollen get overlooked. I bet there is something in that. Given the importance of swelling you emphasise here, sounds as if any swelling should be checked out even if it doesn't look like much. That makes me more determined to wave my persistently slightly swollen wrist around till someone takes notice.
I share your "type" of RA as at it's worst my ESR made it to the heady heights of 21, which probably has others with ESR's towards the 100's laughing in the aisles, but I couldn't crawl out of bed as my joints were so bad! And tho' I have had quite impressive swelling of some joints, quite a lot of the time they don't ballon out but just go bright red and hurt. But that doesn't seem to have prevented joint damage as I have a couple of fingers now that don't bend anymore and are visibly weird shaped (but not swollen....) and ultrasound shows eroded bones in both my feet, which have never swollen by so much as a millimetre.
So my conclusion is that tho' puffiness and lots of synovial fluid increases liklihood of damage, you can still get bone erosion without it. Which means that people should pay attention to all symptoms...not just the classic stuff in the text books. Pollyx
Yes I agree with this Polly - of course inflammation is the enemy here but how it manifests itself is as different as are skin types or blood types or people's physiques. So all these indicators need to be observed initially and then each individual can hopefully be assessed by their own criteria rather than those of some generalised patient who it seems, going by all of us here, probably doesn't exist! And this is a systemic disease after all. My husband came off a nightshift this morning and was telling me about 2 people at work with badly swollen and painful knees who doctors here keep dismissing or giving steroid injections to. He said "surely if they are very swollen that means rheumatoid?" but it doesn't of course - both are very overweight and have diabetes and OA. OA can still present as swollen but isnt systemic. TTx
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But they should have blood tests and symptom check if that's not happened already. If they tick the boxes for OA it's all too easy to ignore the possibility of inflammatory arthritis & they could easily have both. Are these elderly people?
Christina x
No Christina they are work colleagues of his. It's just in one knee for each and they have been diagnosed as having OA/ wear and tear and are okay with that - but just want to be referred to have their knees treated or operated on but the doctors don't want to spend the money on this so they drag their heels.
My point in saying this was to remind ourselves that RA and PsA aren't the only forms of arthritis that have inflammation - OA can do too. I would love to consider myself in remission - and largely do - but the doctors say that until my ESR comes down I can't be so what am I supposed to think? And if you read up about autoimmune conditions such as Lupus that are very closely related to RA and are often misdiagnosed - one of the features of lupus is that joint inflammation is rarely visible although it is still potentially destructive.
So it's very confusing and Alice can say that for her visible swelling is the main feature therefore remission would be for this to go away. But for me it's not that obvious and therefore my blood markers are a way of assessing disease activity I guess. I don't know if this is right but assume it must be or I wouldn't have been diagnosed with RA - I've never had any ultrasound scans of my joints so can't say but it is a worry because I know this disease can be systemic. My rheumatologist explained at my last consultation that RA is probably actually 3 or 4 different inflammatory diseases and is just a term coined by a bunch of rheumatologists so be tenacious for yourself only - the ESR and CRP can be a very useful tool for some. Tilda x
Im not sure u can read blood results as a whole mine are always high esr of 50 normal crp 34 but my joints normal tell the story and when higher blood results come back i can feel good but tired just to confuse issues. You need the whole picture for each person.chrisx
There is actually a new series of blood tests they are doing a bit in the US that tests for about a dozen different inflammatory markers at once - not just ESR or CRP. I believe that is far more useful for some folk anyway, as long as it is done regularly so results can be compared. From what I have read there are only a couple of different disorders where raised ESR is part of diagnostic criteria and where it is always present (and RA isn't one of them). I think there is far too much obsession on blood test results and far too little emphasis on full clinical examination (by the same doctor, regularly, so they can see changes) or on patient reported symptoms.
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