ESR what is normal for you?: Hi Guys What should I be... - NRAS

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ESR what is normal for you?

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Hi Guys

What should I be hoping for in terms of ESR levels? is there a range which means that we are starting to control our disease or is it not really significant?

I cant seem to get mine below 40 at moment but I think many people run at alot higher?

Thanx xx

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Hi Fiona

Normal is regarded as between 1-7mm but it increases with age. My 'normal', when I'm fairly okay, is anything about 20mm. Currently its about 40mm which is not so good for me. However that could be a level for some people that is very acceptable. ESR varies hugely from person to person and is not a particularly reliable tool for assessment of disease activity. CRP is a much better test.

Lyn x

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Thanks Lyn ( Smiley face )We are the same at the moment then ( dont know how to do the smiley faces on my PC yet ! ) I can always count on you to give me the info I am looking for. Whats the CRP test then? why is it more reliable?

Fiona xxx

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Ive just read wickapedia re CRP it says that a high level is linked to heart problems and hardening of the arteries. Its not known what comes first.

maybe thats the link with Heart Disease risk, high levels of CRP and RA?

Just speculating here.

Hope your knees a bit better

x

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Hi Fiona. mine's about 20 at the moment as I am doing well, had my Rituximab about three months ago so it's really kicking in now. like Lyn said though everyone is different before I was diagnosed my ESR hardly moved so as I was pregnant too was very difficult to get a proper diagnosis. Shortly after-wards though it went well over hundred.You get to know your body more than anything I feel, I generally know when a flare is starting and then my ESR will start to go up later on.

mand xx

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Thanks Mand Im in a bit of a quandry at the minute as my consultant wanted to go straight for the Rituximab but listening to good advice from others Im not so sure I should go for something quite so strong yet. Going back on the 28.4 for the second part of my Biologics assessment. Past the first bit apparently.

I thought I wouldnt but the nurse said lots of my joints felt " boggy " whatever that means !?

Yu must have felt pants on an ESR of over 100 I feel as stiff as anything on 40.

How do you know when a flare is starting? Last two times for me it started with me feeling extra abnormally tired.

Take Care

Fiona xx

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Hi Fiona, I know my RA so well now(and so does my hubby) that I can tell when a flare is looming.Fatigue gets worse,it tends to start in my hands they generally get lots of fluid around the nodules and find them even harder to bend.They do go like that normally if doing to much but with rest they go down, if however a flare is starting they stay the same and then every other joint starts until they all feel so painful all day every day.I get a horrible heavy feeling in my body like I cant move ,it's hard to explain really unless of course others get that symptom they will understand.

I'm one of those that no matter what I take the RA never gets completely under control, in all the 17yrs I've never had a remission either. But, the treatments do give me a better quality of life and I've just learned how to manage it now.

It's the fatigue more than anything for most people it seems to get a grip on us all, but you will learn to manage you have to I'm afraid.

mand xx

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yep , tired.. re flaring. a flare at moment

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emandedmum

Mine is 11 but sayng that I'm still in a flare...not sure if that means my RA is milder than others? Doesn't feel like it to me though :)

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Sure its not, as lyn has said on previous blogs RA does not always play by the so called rules. ie Sero negative supposedly being less aggressive than sero positive forms of arthritus. Im sure that many people with Sero negative have some very challenging effects of RA to deal with !! Pain is so subjective isnt it.

Now my train of thought is leading me onto whether anyone has attended a pain clinic in their area and whether they are helpful? I havent as yet.

Take Good Care of yourself

Fiona xx

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Hi Fiona, I did attend a pain clinic many years ago but i felt it was too late by then. they were trying to show me ways of managing my pain but it was things I had already learned for myself over the years.

If you get the chance to go at early diagnosis it would probably be worth it.

mand xx

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I too attended a pain clinic but, like Mand, I had already found ways of dealing with pain and the advice was mostly common sense anyway. I'm not really sure of the value of these sort of clinics as we all have very different needs particular to our problems and what suits one doesn't suit another. Things like hot/cold packs, Tens machines, relaxation techniques all have a place in the pain cycle but appropriate pain meds should be a priority for a long term condition.

Always worth trying if you get an opportunity and can go with an open mind.

Lyn x

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TaiChiMan

Hi Fiona, mine was 47 the last time it was tested, (they have stopped testing ESR and do CRP every time instead now) but that was heading down from 123 late last year. I have always found that under 40 I feel Ok but higher I can feel myself "slipping" into grumpy mode !!

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Tricia-P

Hi Fona

my lowest is 3 with humira weekly and MTX, plus 2.5mg steroid, worse ever pre anti TNF 128 CRP they have stopped testing ESR i must ask why.

Since coming off Humira and MTX i have gone up to58 thats in 3 weeks shows how we rely on these drugs. I'm sero neg by the way

best wishes

tricia x

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I know what you mean about Grumpy mode GRRRRRR

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sparkle.. in going back to your earlier ,blog.. came across something on the internet,. still seems that life expectancy can be cut by up to ten years>?

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What are you doing up at 4.30 am in the morning ?????

Im guessing a big flare ???? if so poor you. Hope you are ok? Yes Ive looked into it all a bit more and I think that there are certain variables that make some of us more at risk.

Im definately not smoking, luckily I dont anyway. I just have to get my weight down some and then try what ever I can to control my inflammation levels. Also my ask for a cardio vascular risk asseement from my GP.Guess it will be trial and error and a mismatch of hard drugs and alternative complimentary strategies. The more aggressive the disease is apparently the higher the risk. Hope you get some kip later........

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yep has snooze from 61m til 830am then from 3pmish til 345pm ish off to bed at 930pm ish and hope for a better night.. might hit the amitript tonite x, have jyst taken painkillersx

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YES THE FATIGUE GOD DAMN IT !!!!!!! ( LOL)

Been looking at the research on Enterecept and fatigue. Their is a paper on it by NRAS. Its supposed to get a good result. Also Cimzia which NICE have just approved. Think im going to ask to try one of those as I have failed on Metho due to suppression of lymphocytes. Apparently theres some new reseach about being able to predict which anti TNF we will respond too so that we dont keep cyclicing on different drugs before finding the correct treatment. Reports say alot of joint damage can be done when we are not tightly controlled in the disease and Rheumatology take ages to sort out the right drug combination..

xxxxxxxxxx Sorry about my typoing ( case in point! )

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Hi Fiona

I am on Enbrel and still get some fatigue but overall results with the drug are pretty good in terms of disease progression, especially when used with Methotrexate. Cimzia is further along the drug regime usually after Enbrel and Humira.

The current BRAGGS research programme hopes to be able to link certain genetic and genome material to appropriate biologic therapy in order to eradicate the current 'hit and miss' approach. At the moment the only way of achieving this is to consider the blood profiles of individuals along with presenting symptoms and hope to find the drug that is most suitable. That said our RA disease pattern changes with normal bodily changes and hence the need for constant review.

Such a game!

Lyn x

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Hi Lyn

What im puzzled about is why my consultant said mabthera straight away and then when I saw the Rheum nurse a week later she said the trust was saying to prescribe Cimzia to everyone unless they especially said no. I trust what you are saying and am not sure why my health authority is doing it differently.

When I go bacxk on the 28th I have to have a view about what drug. Can you tell me about the antibodies again. What different antibodies can we have and what do they show? What is an positive to antibody RA and LO ? Is RA literally RA and what is LO? I need to look it up somehow.

Thanks Lyn xxx

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still waiting for pain clinic... almost two years in............

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