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Did you know that exercise increases inflammation in systemic sclerosis?


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#1 debo_92

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Posted 26 May 2010 - 09:07 AM

I realize that no test can definitively say you have an autoimmune disorder. I am however wondering about the results of a couple of my tests. My doctor has already said that everything came back "normal", but after getting my test results I am not sure I agree.

My ESR is 16 (according to the lab normal range is 1-15) and my CRP is 1 with normal or negative being considered anything <1. I realize that neither of these numbers is very high but they are out of the normal range.I know that last year my ESR was 14. I can't see where they ever did the CRP on me last year.

I feel like the test results seem to show that I have some inflammation going on at this time.

#2 Margaret

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Posted 26 May 2010 - 02:32 PM

Hi Debo ,

Just for comparison, my son's ESR was in the 80's when first diagnosed. It was only 17 when diagnosed with pneumonia last Dec. Of course, everyone is different.

Take care, Everyone.
Margaret

#3 Shelley Ensz

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Posted 27 May 2010 - 09:57 AM

Hi Debo,

I can understand your concern. As it happens, even normal ESR's do not mean there is no inflammation or disease. The tests are just a tiny part of the huge overall clinical picture. That gets back to the issue of why scleroderma is diagnosed only on symptoms, and not on blood tests. There are also many medications and even things like taking vitamin A that can elevate ESR; even menstruation can do it.

That's why usually they would look for a "higher high" for ESR. My ESR is typically over 60, so it is pretty much a useless test to even run anymore; it was more helpful in the initial stages of diagnosis, but it only indicates inflammation which can be from anything, even infections, and not necessarily autoimmune disease.

I may be wrong (I often am!) but in the case of autoimmune diseases, they might be hoping for higher highs than that on ESR and CRP. I am quite sure my doctors would report out levels like this as normal even though they are a titch over the lab standards. Some of the test abnormal ranges are more meaningful than others; it depends on what type of test it is, and what it is for.

Some illnesses similar to rheumatic diseases do not elevate ESRs or CRPs, such as fibromyalgia (FMS) or chronic fatigue syndrome (CFS).
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 CraigR

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Posted 28 May 2010 - 01:58 PM

I would not be concerned with an ESR of 16 - in fact, I think up to 20 is considered normal for men. There is also the CRP test for inflammation (c-reactive protein).

Having dealt with this particular number for so many years, I've gotten to where I can guess the value pretty close from how I feel. If it less than 25 (rare), I feel terrific. A value in the 40s is most common, what with sclero and Sjogren's. When it gets into the 70s, 80s or 90s, I do not feel like getting out of bed or chair. Rather like a bad case of the flu, but without respiratory problem or a fever.

Thus I would jump for joy (and get a lot done...) if mine would go down to 16!

Craig

#5 mando621

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Posted 29 May 2010 - 02:21 AM

Hi Shelley,

It is so interesting that you state that scleroderma isn't diagnosed with blood work, but with symptoms. I have many symptoms and yet to have a diagnosis because my blood work comes out fine for the most part. Yesterday I saw a different rheumatologist in my insurance plan, and he seemed even more confused than my current doctor. Well, the good part of it, he said that while I don't have abnormal blood work and thus can't be diagnosed, we should treat the symptoms that I have. He also seemed to admit without saying so, that this is a little confusing for him and he is going to push for a referral to a university hospital with a scleroderma specialist!!!!!!

So, I don't know how this is going to work with seeing a specialist if my insurance does what they did in the past and dictate which doctor I can see, but there is hope that I might finally get some answers.

My latest EGD didn't show strictures, as a matter of fact, the lower esophagus is stretched and the doctor couldn't dilate it with the largest balloon he was willing to use. This seems consistent with scleroderma damage to the esophagus from what I read.

Mando.

#6 CraigR

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Posted 30 May 2010 - 06:02 AM

Good that you have been recommended to see a sclero specialist. It seems rare that anyone but the specialists understand this disease - especially how it can vary among individuals.

It's not unlikely that your insurance company may fight you. I've always found that if you stick to your guns and get good recommendation from your doctor (insisting that this is the only effective course), they will usually give in.

If you haven't already, you will have a blood test that checks for many signs of autoimmune disease - including antibodies for specific conditions. As Shelley mentions, these are not conclusive. But as you come to understand them, it is likely that some abnormalities will show up in an individual prone to autoimmune disease. With this disease, you really have to be your own doctor to a major extent (as, no doubt, you are discovering)

Good Luck

Craig