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Your average ESR/SED rate? Any help...please.

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Posted 3/9/2008 3:55 AM (GMT 0)
My SED rate flies up, tens of points at a time whenever I go into flares. I have FMS and I am under testing for SLE. My PCP and myself truly believe I do. (For extra info, message me. I need help, so I don't mind)

It was 38 two weeks ago, and it is 52 now. I just want to know if this really is nothing in the world of Lupus and inflammation....rheumatologists refuse to consider Lupus,because:

1. They have done ONE ANA months ago that came back negative.

2. I am 18 years of age.

They have looked at everything else, and nothing else fits what is going on.

What is your average ESR? Normally? During a flare? Do you have ANY help for me....?

Posted 3/9/2008 4:23 AM (GMT 0)
Hi KAnne,
Welcome! I have lupus with multi organ involvement and have never had a positive ANA. My ESR is usually elevated. Many things can affect the ESR. I really don't understand why your age would be a factor and a neg ANA doesn't really mean that much. Lupus is usually based on the whole picture of labs, physical exam, and very importantly you symptoms! Someone will be along with information/criteria for diagnosis. Hang in there. There are alot of helpful, smart and supportive people in this forum. I hope your mystery get unraveled! God Bless You, Judy
Posted 3/9/2008 4:56 AM (GMT 0)
Hi KAnne,

 

FMS won't register an elevated ESR.  Fibromylagia isn't an inflammatory condition. I have it.  It's an enhanced pain condition.  So the fact that you have an elevated ESR is pretty indicative of an inflammatory process going on, like lupus or another connective tissue type disorder.  Your ESR is quite high.  Even when I'm in a flare up, I don't see it go past 30 very often.  When I have the disease under control, my ESR ranges from about 5-15.  Normal ranges for ESR levels are 0-20.  I would definitely get a rheumatologist to re-run that ANA test, along with a complete lupus blood panel.  Those test results can change quite quickly.  If lupus is suspected, it's most common to run these tests about 3 times a year, until a trend is noticed.  Keep a diary of all your symptoms, take pictures of any rashes, etc.  Make sure your rheumatologist has as much information as possible. I wish you didn't have this to deal with at such a young age.  Keep in touch with us okay.

 

Ginny

Posted 3/9/2008 1:12 PM (GMT 0)
KAnne, I agree with the others. I just want to second what ginny said about fibro. People with fibro do not usually have abnormal labs and an elevated sed rate means you have inflammation somewhere. My sed rate usually ranges from 20-35. I hope you get some answers soon. Please feel free to ask any question you have here - that's what we are here for. I'm glad you joined us.
Posted 3/9/2008 1:43 PM (GMT 0)
My SED rate is usually 20-25, not bad. But my C-Reactive Protein (CRP) is usually 3 or 4 times what it should be. It seems to be a better indicator for me.
Posted 3/9/2008 4:56 PM (GMT 0)
SED rate (ESR) can be all over the place.  Mine was very high initially but has been in a normal range for the past two years as my AI diseases were brought under control.  The test only indicates that an inflammatory process is taking place in your body and is not a test for lupus or any other disease.  It is just an indication that some type of inflammatory process is active.

Lupus itself is so difficult to diagnose.  Tests can be negative or positive and vary from test to test and yet you can have lupus.  That is why so many do not get a positive diagnosis for years.  My doctors deduced I had it several months before my first flare and confirmation by tests that I had lupus.  My platelet count had been low and went even lower and I had mild anemia for years.  My internist sent me to a hemotologist and after months of tests he deduced that I might have lupus. 

Bill

Posted 3/9/2008 9:38 PM (GMT 0)
I always have a normal SED rate and C-reactive protein- even with highly visable inflammation. I also have a negative ANA. Take a look at my dx list though and you will see that blood work doesn't always match what is wrong. I had 4 of the 11 criteria when I was in my early teens. I didn't get dxed until 2005 a few months before my 29th birthday. I say find a second opinion and ALWAYS make sure the doctor is an actual lupus specialist. Take pictures of rashes, see as many different specialists as you have to but insist on answers.
Posted 3/10/2008 12:11 AM (GMT 0)
My sed rate is often really low (2 or 3) even in the presence of obvious disease activity. I've only had my C-reactive protein measured once, but it was 3 or 4 times the upper limit. My dh who is a scientist who researches lupus says that the ESR is an old test, that is subject to lab error and not a reliable indicator of inflammation. It certainly shouldn't (in my opinion) be used to diagnosis or r/o an entire condition.

Amy
Posted 3/10/2008 8:10 AM (GMT 0)
Hello Kanne, The others have given you some great advice. ESR is way different for each of us. Mine is running around 25 now but was 55 for a couple years while I was feeling really poorly. But it really doesn't indicate Lupus . . any inflammation can cause it to go up. Check out the link at the end of my signature "4 of 11 Criteria" . It is a link containing the criteria for diagnosing Lupus. There is also some good information for new members in the link "Lupus Resources". I hope this helps. Blessings!
Posted 3/11/2008 4:23 AM (GMT 0)
So funny reading this. My PCP just diagnosed me with Fibro because my lupus blood work and ana were both negative. My sed rate was 48, up from 31 a month ago and my WBC 15. He said fibro would cause that. lol! His reaction to abnormal labs is to keep testing me saying it's probably a flook. Over the past 5 months i've had blood drawn five times with each result more elevated than the last and still he says it's probably fibro. My platelet count is 555,000 so he set me up with a hematologist and I asked him to please send me to a rheumatologist. He agreed. He put me on 50 mg of elavil and said the rheumatologist will do the same for my firbo because that's what's wrong, he's sure of it. lol. He actually told me my sed rate would be 70 - 100 if I had lupus or R.A. Don't you just love docs?
Posted 3/13/2008 3:24 PM (GMT 0)

Hi KAnne,

   Mine is 57 right now and I feel pretty good other than my eyes. I'm just in a mild flare right now otherwise. When I'm flaring bad it can go really high. I hope you get better answers soon and start feeling better. Keep us updated and hang in there. You will be in my thoughts and prayers.

                                                           Babs

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