ESR discreted for me? Baffled.: Not for the first time... - NRAS

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ESR discreted for me? Baffled.

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Not for the first time my ESR is a bit high at 58. Previously (2 weeks ago) it got down to a princely 34 but before that it was 50 and 62 (6 weeks ago). Now with both the 62 and the 58 reading of yesterday I bounced into my GP feeling I must surely be in drug induced remission because I'm almost pain free these days. I do feel a little lousy all the time, especially after taking my MTX, and the nausea is back again but this time I'm wondering if it relates to the Hydroxy as the bouts of nausea are daily. But I've not had any bugs, my WBCs are fine and so is my liver and all the other stuff that so I studied this print out from my surgery a bit disbelievingly. My GP has seen these results and written "no action necessary" so he's obviously not worried.

Could it just be that I've got a higher average than normal - could it be meaningless and what will the rheumy read into this when I see him next week? I really don't have any pain in my joints - just some general stiffness and lots of clicking. I am baffled and slightly worried because I have been assuming that I have no active RA just now - surely it's not possible to have active RA and not to feel aware of it? My main anxiety is that there's something going on that my GP hasn't tested for because everything is just revolving around RA and thyroid.

Has anyone else experienced this?

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Hi Tilda,

Its weird how we are all so different. My ESR was 6 but my joints (fingers & toes and feet) are still quite sore, I also have a lot of clicking in my fingers but not much inflammation at all.

I thought after being told I was in remission I would have no pain but that doesnt seem to be the case, hey ho who knows, not me thats for sure.

Mary x

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Yes this is what is bugging me too Mary - there are people like you and Polly who obviously are not in remission because you have pain and visible swelling - and then there's me who feels the RA has done a hike (been chased off by my DMARDs and yet according to my ESR this is not so. That's why I am thinking it must be a meaningless test for you, me and Polly? But I do feel a little concerned that it means something more sinister is going on and that's why I feel so exhausted a lot of the time even though I'm not in any pain? I am hoping someone else here has been in the same boat with a high ESR but no pain?

Tilda xx

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Hi Tilda, I've only had one period of chronic / severe pain in April and May. A protracted flare, I suppose. My ESR was lower then than it was in June when I'd been feeling loads better for a few weeks (but unlike you I was still having trouble walking etc. as well as tiring easily.)

I don't want to be a misery but I have read that some specialists think that RA can be invisibly active. Can't remember the details but I'm pretty sure that was somewhere on the 'RA Warrior' site. I'd quite like to forget having read that but I can't, perhaps because I don't want this sneaky disease to outwit me!

But I hope your Rheumy has good news ... I think that ESR is a bit of a blunt instrument.

Christina xx

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Ps Mary I don't know if you saw on my recent blog but my GP said that clicky joints is gas being released and isn't caused by arthritis or not being supple/ being stiff and brittle but can be caused by inflammation of the joints. I'm clicky in all my joints and I know for some that is hyper mobility (ie double jointed) but I've never been clicky like this before so am wondering if this is the inflammation that my ESR is showing perhaps? TTx

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Hi Tilda

What are your CRP levels like? Are they also high? Apparently they are a better indication of RA inflamation.

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My GP doesn't like the CRP as much - he says he can't see how it's as relevant to RA for some reason - so he doesn't take it routinely. But the rheumy letter asked for it for my telemed consultation so he was forced to take it and 6 weeks ago it was sitting at 13.6 which is almost normal I think. I just don't know what to think really. If I was feeling grand then I'd ignore it but now I keep wondering if the fact that I'm feeling a bit sick and very tired all the time is because of some inflammation that hasn't been identified. I even looked at Lupus (SLR) and wondered if the RA has been wrongly diagnosed and maybe that would explain how I'm feeling and my raised ESR but I don't have any unexplained rashes or migraines so not sure? TTx

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That's confusing because I was told the exact opposite regarding bloods. I would definitely check this with your rheumy team because the last 2 consultants I had were more interested in CRP than ESR so they may want to write to your GP.

13.6 is higher than the consultant I had at Addenbrooks was happy with and he offered me a steroid injection on the strength of that. Having said that, each of us are different so we can't really compare. My understanding is that ideally they would want it at < 5 but I haven't double checked that so I may be talking nonsense (again).

It does make you wonder about diagnosis though doesn't it?

Perhaps you are just amazingly hard-core about pain. Get one of your boys to jump on your toe to see if it hurts - scientifically sound test.

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Hi Tilda,

Yes I did read that about the clicky joints, very interesting!

I also feel very tired at times, normally in bed about half 9, had enough by then.

So looking forward to the school hols, hubby is a teacher, so we can have a few lie ins. He needs a good rest too as he has Parkinsons disease, what a pair we are lol.

I have appointment with consultant in August, so will let you know if I am still in so called "remission".

I think I remember you saying you have an one to one appointment soon, let us know how you get on wont you.

Mary x

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Tilda,

My hubby says to ask, are you a Runrig fan??

Big fans here!

Mary

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Runrig - oh not especially why?! My son is playing in about 2 hours time in the biggest gig his band have had yet in an open air stadium for Stromness Shopping Week so I will be wearing my rock/ blues mamma hat tonight but that's about the height of it I'm afraid! Yes I have an apt with my rheumy a week on Thursday. I haven't got a lot to say for myself to him really except that I'm not feeling very well and always tired but nothing arthritis much at all. Gosh Parkinsons and RA does make you both a double whammy pair - poor both of you I hope you get a really good rest. We broke 3 weeks ago now so only a month left to go of holidays and to be honest I'll be relieved - four youths in the house is quite exhausting I find! TTx

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watson3

Hi tilda

I sent a site info to Paula.

Re ESR interpretation.

Can't find it at the moment, but the C reactive protein test is a much better test. Also more expensive. The ESR is a basic test that can give varible results depending on the environment of The blood laboratory. So may not be you condition but rather the condition of The specimen.

Carole

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Oh that is interesting Watson - ESRs are done in our local hospital lab up here and I did query this at surgery reception - but as I've just said to Creaky - my GP is reluctant to take CRPs and both GPs told me this is because they can't see how it is so effective at monitoring disease activity as the ESR? I can't really argue with both of them on this matter since they always seem to be pretty good at their jobs. But last time it was taken at the instruction of the hospital who require both and was 13.6 - only a little above normal levels I believe? TTx

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caggy

Hi ya, you say you are having Thyroid prob's or checks! seems to be a theme going on here, be interesting to find out who says what about the test results, but the tiredness and weakness seems more likely Thyroid than RA, I'd always put it down to Fibro but now am as confused as the rest of us, my joints arn't as bad as they have been, I mean they are not swollen, red or hot, the wrists are stiff in the mornings and over working any joints asks for trouble the next day, so apart from feeling I'm about to exit this world! I'm good ish....Oh my esr was 23 raised from 9 thats why the GP gave me antibiotics yesterday, so feeling sick but it could possible that as I'm now on 2nd week of MTX again. keep keeping on..Carol

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I don't think my thyroid checks are back yet Carol but my GP lowered the dosage of Levothyroxine about 3 months ago by one tab because he said test results indicate I was taking too much. I don't think the thyroid disease would explain the sickness and the afternoon exhaustion because I am still taking thyroxine so it shouldn't make a huge difference to me. He said he would let me know if the TSH or whatever came back and told him otherwise so guess he would have phoned today if so. I suppose I just worry that there is still inflammation going on somewhere but can\t think where. I will try to stop worrying I think - it's the rheumy's job to work it all out not mine so no point fretting. I was so hoping my ESR would keep going down is all. TTx

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I checked out RA Warrior, a lot of scepticism there about ESR & CRP as indicators of disease activity. Found a link to an article that suggests not just that low ESR & CRP aren't good indicators of remission but also that high values can occur when disease is inactive: jrheum.org/content/36/8/156...

Can well understand you wanting to stop thinking about it now but passing on the link know in case you feel curious about it later.

Christina x

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Don't worry Christina I am hoping to be able to discount the high ESR that's why I posted this question! Having heard several people saying on this forum recently that their low ESR readings are meaning that they can't be put on anti-tnfs when they plainly need them I feel really cynical about these as measures of disease activity.

I just wondered if anyone else has it my way round with raised markers but very little pain? I am using iPhone just now as working in studio but will check out your link soon as I'm back home - thanks for that. I'm probably reading far too much into these results because my rheumy did say "it's important that we treat the patient not their blood results" so on that basis sure I'm going to be deemed fine - which I probably am. Tilda xx

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Okay I've read it and from what I understand this method of assessing a patient's disease activity needs rethinking by the med profession. The bit i understood best was the last para where he says "Learning how each individual patient responds to RA inflammation in terms of ESR/CRP enhances the value of the tests. Learning when to ignore a test and when to rely on it lies at the heart of good medical care.". This is exactly in line with what my GP said about the ESR test when I asked him about my results a few months ago. He said each person with RA has their own levels of acceptability and levels which indicate that disease is active and this has to be viewed in terms of a pattern - so a series of raised markers over a period of months may take on meaning if it is significantly different to the pattern of the same patient when taken a year ago let's say.

Mine is always taken first thing in the morning - usually on a Monday - but he also said it can vary a lot throughout the day. So these tests might be useful to work out if a person has inflammatory arthritis to begin with but "normal" readings go out the window from then on and it's certainly no use comparing RA patients with each other because readings so greatly from RAer to RAer.

It is therefore ridiculous to have a cut off point in deciding whether a patient is eligible for anti-tnf for example. It does give me addition faith in my GP and rheumy because I don't think they read too much into it and if I'm feeling fine in my joints still a week on Thursday I don't think he will make any changes at all. I was just fretting that it might not be RA - especially when I read that SLR can also give pain in the knuckles and fingers in a similar way to RA and cause similar damage only usually without the visible inflammation. I suppose because I've had so little by way of visible swelling I get paranoid that it's something even more systemic and pervasive than RA is - sorry people I'm just being a tad neurotic I know! TTx

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watson3
watson3
in reply to Hidden

I'm impressed by your GP and Rheumy. Looks like you have a good.team looking after you.

Hope Thursday goes well.

If I find that ESR site I'll message you.

Carole x

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Thanks Carole that would be useful although I think I looked it up when you posted it the first time and got the idea of how variable the ESR reading is from person to person then. I think I will take a very brisk list of questions and things I need him to include in the picture or give me some answers to if he can. It all gets very geared towards the mechanics otherwise and I want him to know about the Reynauds, and about the mood swings and the general sickness I get all through the week just in case they relate in some way to the raised ESR and are significant. Hoping very much that they aren't but as I probably won't get to see him for another 8 months I don't want to feel I've been useless afterwards! TTx

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