Sedementation Rate : No diagnosis & no meds other... - LUPUS UK

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Sedementation Rate

Sheole profile image
6 Replies

No diagnosis & no meds other than pred a few times in last 18 months. Also frequent Naproxyn.

Labs have been all over the place. No Positive ANA but it has been borderline. Anyway Sed Rate has been consistently 65, other than 125 a couple of times in the last 18 months. Never drops below 65.

Is this consistent 65 dangerous. Should I be getting a second rhuemy opinion. Thank you

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Sheole profile image
Sheole
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seanto profile image
seanto

I cant offer you advice on the blood work as i dont know much about that stuff. However if you dont feel that you current rhuemy is doing enough to help then I would suggest getting a second opinion. Theres nothing wrong with going for a second one and can be easily done through a gp if you have one whos happy to help you.

PMRpro profile image
PMRpro

i wouldn't say it is immediately dangerous - but it is a sign there is rampant inflammation going on somewhere and they really should be trying to identify what and where and doing something about it. If you don't feel the current rheumy is up to the job - then you need to find another. Do I gather you are in the USA?

Sheole profile image
Sheole in reply to PMRpro

Thanks for response. I am in Canada.

I have Lung Dr & Rhem Dr, along with fam Dr. However family Dr is just out of med school. The others seem to be very competent. They continue to do labs & try to figure out cause.

I just don't want perm damage from this sed rate as is consistent.

Are you in USA.

Thanks again.

PMRpro profile image
PMRpro in reply to Sheole

No - Italy actually - don't ask! The sed rate per se doesn't do damage - the question is - WHY is it high.

Most of us here are in the UK but that doesn't matter at all. I had diagnosis of seronegative RA five years ago but the joint pain and swelling disappeared along with the disease modifying antirheumatic drugs. Eventually I came off them all and the pain and swelling didn't return. However I started to get worsening symptoms like MS and my ESR/ sed rate remained similar to yours and my CRP steadily rose once off steroids.

My gp was baffled by high ESR and so were all the doctors I saw. The rheumy said autoantibodies were also negative in January of this year so I couldn't have Lupus or Sjogrens

Finally, once off all pain meds and fully clear of steroids, my ANA came back a clear positive, but other antibodies negative apart from IgG, IgA and the usual high sed rate. My new rheumy asked me to get a lip biopsy done and this showed up a very clear positive for Sjogrens Syndrome, which is the disease I've now been rediagnosed with.

The rheumy explained that my blood has been extra intense for all this time because of the lack of moisture it carries leading to high protein levels - so this is why I've had such consistently high ESR, as is often the case with Sjogrens he said.

Worth thinking about even if your symptoms don't yet tarry.

Hello,

It sounds like you might want to seek a second opinion if you feel that you haven’t been given a clear diagnosis. You can ask your GP for another referral. We can also provide you with a list of lupus specialists in your area. Don’t hesitate to email me at Fabienne@lupusuk.org.uk

Erythrocyte Sedimentation Rate (ESR) is a test doctors commonly use to check for inflammation. Most people with active SLE have an elevated ESR.

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