Inflammation : Anyone else's inflammation doing... - LUPUS UK

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Inflammation

Awwy profile image
Awwy
10 Replies

Anyone else's inflammation doing this and docs not doing much? ESR?

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Awwy profile image
Awwy
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PMRpro profile image
PMRpro

Although it looks very dramatic, 20 is only the top of the normal range and 30 isn't greatly raised. ESR will rise in response to many things, many innocuous like colds. Now I would look at that and think, hmm, something going on, wonder what it is. But too many doctors think that someone whose ESR is running up to 20 has nothing - even though they can see there is a rising trend. The normal range is the range that includes 95% of a large population of nominally healthy subjects. It isn't a range that applies to each patient.

Have you any SYMPTOMS to go with that rising trend? Did they do any other blood tests that might give some indication of what is underlying the ESR going up?

Awwy profile image
Awwy in reply to PMRpro

Hi

Yes I have normal blood tests. I have been anemic since I was 17. I have swelling and my body aches. Whole body with fatigue. My iron levels for the past year have been fine. (That hadn't happened before. Red blood count hasn't been right for last 6 months has been getting higher than normal.

I have mixed connective tissue disease and Hashimoto's. Didnt want to post too much because of the guidelines not been on here long so not sure what you can and can't post.

I've asked for a full thyroid panel. So I shouldn't be too worried by this?

I havent a cough/cold or been ill other than my endometriosis and AI conditions for 3 years.

Thank you for your response. 💜

PMRpro profile image
PMRpro in reply to Awwy

Endometriosis can cause raised ESR and CRP (a protein that contributes to ESR and sometimes more reliable).

On my home forum you can write pretty much anything - admin will tell you if it is not acceptable - but anywhere knowing some medical history is really helpful for members to reply whether with advice/suggestions or founded knowledge. Much the same as going to the doctor.

Awwy profile image
Awwy in reply to PMRpro

Thank you. 💜

OldTed60 profile image
OldTed60

my ESR was always 80-90 plus in the days where it was taken. Now no longer thought to be useful as a marker so they only run CRP and that was only ever elevated until I had a couple of rounds of IV immunoglobulins and quit all refined sugar - now normal range and going down - although I still get feeling of pain in peripheries when my gut flairs. I have overlap systemic sclerosis and sjogrens disease rather than lupus. We all have our normal range and for my raised to very high was my normal. With ESR 0-20 was normal range and my rheumatologist and GP only commented with over 80 or 90. I think PMR pro is completely right to say these graphs are useful mainly to us rather than our doctors X

PMRpro profile image
PMRpro in reply to OldTed60

They should be important to doctors in monitoring some disorders when the aim is to contain inflammation - as in GCA and PMR - when they should look at the graph to establish if there is a trend, But the pure figures really aren't very meaningful. It is all about context.

OldTed60 profile image
OldTed60 in reply to PMRpro

yes they should be if in context of PMR and GCA and Vasculitis - but for sjogren’s and scleroderma they don’t seem to use these to monitor disease activity much. I mean not part of the disease activity scoring system for these - don’t know about lupus though.

PMRpro profile image
PMRpro in reply to OldTed60

I think it really all depends on the individual patient - and the context is key. All the a/i disorders are idiosyncratic and they have been a bit brainwashed about lab results and don't really understand them. But the numbers are SOO attractive - they want them to mean something!

OldTed60 profile image
OldTed60

😂 I like the idea of our docs finding blood-work “SOO attractive” - they deserve some fun?! ! But I also know my rheumy pays little heed to mine now as I have to ask her what my newly normal range CRP might signify and she had to look and didn’t say much just shrugged. She told me once she dislikes the ESR as a marker because it’s so vague. “Let’s be guided by your symptoms not your blood” - and yes she’s great and I’m lucky!

PMRpro profile image
PMRpro in reply to OldTed60

Yes - she is right. I was being sarcastic - too many want nice solid numbers and just don't understand that that isn't how it works, they aren't written in stone. She obviously does though.

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