I understand an elevated ESR rate can indicate Lupus amongst other conditions. What do you call high?

[smarty]

I have POTs syndrome, pernicious aneamia, and what has so far been referred to as Post Viral Syndrome. I have had this phase of illness for about 3-4 years now and am not improving. I asked my GP for a referral and he carried out some more tests, including ESR. I am 41 years old and my ESR has remained at about 49 for around 2 months. My GP (not to criticise, he is a good Dr) does not seem to know what to do next and it has been left that he is phoning haematology for some advice. I am not trying to talk myself into an illness which has not yet been diagnosed but wonder if this forum thinks the brief profile might suggest lupus? I do not have a rash unless I go out on the sun in which case exposed skin is plastered in blister-like raised, angry rash which can take months to completely disappear. Comments/advice to take back to my GP would be appreciated.

Kind regards

[Sue2803]

Certainly sounds like some Lupus symptoms, if your GP is good, ask him to refer you to a Rheumatologist, they can diagnose Lupus.

Good luck

[smarty in reply to Sue2803]

Thank you - I will do.

If I can get a diagnosis other than the vague 'post viral' one, it might open up access to other treatments. If I can do anything else to help understand and treat the debilitating fatigue and aches/pains it will hopefully go some way towards getting me back to 'living' again!

Thanks again...

[medic1969]

Esr at high levels can indicate infection as can a raised crp, what were your white cell counts, crp should be less than 2 esr levels in females is age+10 divided by two. Constantly high esr is potential indicative of auto immune disorders.

[smarty]

Hello

Thanks for your time. Do not know white cell count - will ask

I understand CRP 'slightly' high...

normal ESR for me based on this calculation should be 26, it has remained elevated for a couple of months - at latest retesting is 49 which I gather is not drastically high.

Between tests was given a course of B12 injections.

Recent blood tests also show up the glandular fever I had when I was late teens... could this be it?

I'm not yet understanding cause and effect - is the ESR rate high because I have aches and pains, or do I have aches and pains because the ESR rate is a bit high!? When there are a few things going on, I'm not sure what the domino effect is... POTS/Post Viral syndrome?/low B12/above normal ESR/glandular fever markers/Pains etc... its been almost four years of illness and at this stage I'm still not sure where it starts and ends!?

The thing that struck me reading on this site is the photo-sensitivity which I had not thought to be connected to anything else (just thought it was more bad luck!), but is something I suffer with badly in the summer and cannot go abroad. I wonder whether this irritating and sometimes painful (but manageable) symptom is the missing link!?

[doobie]

hi i have just been diagnosed with lupus my esr is 55 and goes up and down, but never goes under 30 . i have severe joint pain if i sit out in the sun i get blisters that look like chicken poxs, on the start of a flare i have mouth ulcers and ulcers up my nose,i am in pain all the time fatige is unbareable . it is now affecting my fingers and toes , maria