[greenhaggis]

Hi,

It there anyone out there that have the problem or continually very low ESR but still flaring!

I do, and now the Gastrologist and Immunologist are looking into other problems other than Lupus.

I had more blood tests inluding two that I could not read (badly handwriten) that both began with 'a' (1st word) and the 2nd word was cells (in both instances!

I have read that low ESR does not normally get investigated, but as I have Lupus it needs to be.

As always, I'm finding life after Lupus more puzzling than before the diagnoses.

Lesley

 

[wifajax]

Hi Lesley!

Could the poorly written word be atypical or abnormal, perhaps?

My ESR levels are typically quite low, even when I'm feeling like I've been hit by a truck. A "normal" range for me is between 5 and 10mm/hr. I get single-digit results when my rashes are flaring, too.

My rheumy has been wavering on my diagnosis in part because my ESR has never been higher than mid-20's. I know there are others here whose ESR remains within the normal range, as well. It can happen in lupus, although it isn't necessarily what docs expect.

It sounds like your doctors are being thorough, and that is always a good thing. Investigating other avenues cannot be a bad thing.

Good luck!

Terri

 

[Nutty]

I don't know much about the ESR test, but i had a real bad case of pricarditis and all my blood work was normal. Since then I was at the hospital for the nerve pain in my knees and muscle weakness. I found out later that my ESR was 12 (don't know what normal is) but went up to 44, which is high. So when i was the sickest in a flare, it was normal. So, I'm not sure how much we can rely on the blood work. I think the doctors should focus on the symptoms.

This is probably not very helpful, but i thought i would share.

Nutty

 

[cmfinnis]

hi!

Yep I have ESR problems too. Mine is really low and baffled doctors for quite a long time. Usually it's 1 but has been a max of 6!!! Even when in hospital pretty ill from the lupus. Initially I was told that some people with lupus don't actually get an increased ESR but that doesn't mean anything really, just that in those people there's no real point in keeping testing it. Having a low ESR does not mean you don't have lupus.

However, in me, I then found out I have a rare problem with my immune system called CVID - low Immunoglobulin G and A - this in turn leads to the fact that my body cannot produce an ESR when it's having a lupus flare or an infection because my body cannot produce normal antibodies . . . . have you been checked for this?

Hope they get to the bottom of it soon for you

Cathy x

 

[nicky00]

For what seems like centuries the ESR debate has gone on.

It is just so frustrating to be told that your ESR low but you feel ill despite that.

I have read posts here that say not to worry about ESR as any indicator in general. There are some very obviously ill people here who dont worry about their ESR rate being related to how ill they feel.

A good Rhumie will go on blood tests and symptoms anyway.

Finally I was told by my rhumatologist after a long time asking him why if my ESR is getting lower do I still feel ill.
Although he related a high ESR to being symptomatic he did eventually say 'antigens' still cause symtoms despite ESR being lower.

In other words there are more things going on that they are still coming to realise in a medical sense.

That is my handle on my experiences for what it is worth.

Nx

 

[Maia]

I frequently have an ESR of ZERO, or 1 or 2. I don't think it has ever been higher than 4. My ESR is very low - always - no matter whether I am flaring or not. For a few years I had more than a few doctors telling me that my lupus couldn't be "active" since my ESR was normal. Sure felt like a lupus flare to me all the while! I now have a doctor that says you don't need a high ESR to have lupus or to have a lupus flare.

So I know exactly what you are experiencing with doctors and this life after lupus being so puzzling! I went through the exact same thing (yet interestingly enough there was no problem diagnosing lupus in the absence of a high sed rate due to long term low grade fever, malar rash, pleuritis, positive ANA, joint pain, joint swelling, positive anti-cardiolipins, sun sensitive rash, mouth ulcers, etc.!)

That is interesting about the CVID and low sed rate Cath. I do have IgA deficiency, so I wonder if that is part of why my ESR is always so low? There are many factors that are known to artificially raise/lower the ESR, it is far from a perfect test. I'm sure they don't know all of the things that affect the sed rate test.

 

[Raglet]

what is your other bloodwork like when you are flaring ? My ESR doesn't change much, but my anti-ds-dna rise, wbc and compliments drop, etc.

ESR is only one test, my flares show in all the others so we pretty much ignore my ESR.

hth

raglet

 

[Maia]

Good point Raglet... my c4 drops when flaring although at it's highest it is at the lowest end of normal anyways. My doctors still tend to only run ESR and CRP to assess inflammation even after 6 years of normal values. The only times c4 has been tested has been at my request actually...

There are other blood work indicators of a flare, but really a flare should be treated based on symptoms/signs rather than requiring any sort of blood work evidence first.

 

[mumsy613]

I have had elevated esr twice in 12 years. I always wondered why Drs keep ordering the darn thing...has nothing to do with how sick I am. I have been told that prednisone (at any dose) suppresses esr. That would make sense for me since today is the first time in 12 years that I am completely free of prednisone. Celebrating! :yes: Fran

 

[LolaLola]

Dear Fran, Special day for you. Well Done on being pred. free. I am so happy for you.
x Lola