Diagnosis and blood tests

I sent this email to another member who had more questions about diagnosis:

Your frustration is understandable, but the proposed 2013 ICBD "point system" is actually quite forgiving in that it only requires 4 points for a diagnosis of "probable Behcet's," after other diseases have been ruled out. That means that you only really need two recurrent major symptoms (oral, genital, and/or eyes) to meet the baseline of 4 points. Or you can substitute a two minor recurrent symptoms (skin, neuro, vascular, or pathergy) for one of the major.

And these symptoms do NOT have to occur at the same time; they can pop up over a period of years. In many cases, the only symptom that requires repetition is oral ulcers at least three times a year, during at least one year. And those can be reliably reported by a patient. Even if you only had genital ulcers once (or never), eye inflammation once (or never), and so on, you can still be diagnosed with BD if you meet the other criteria. A few patients have even been correctly diagnosed without ever having oral ulcers.

I would guess that almost everyone in this group meets this baseline (4 points) or else they wouldn't have been suspected of having BD. I realize that I was extremely fortunate in 1988 for a gynecologist to suspect Behcet's after I'd only had recurrent bouts of oral ulcers plus two outbreaks of genital ulcers -- especially since I'm a blue-eyed Scandinavian. Shortly afterwards, I developed arthritis, which would have bumped my score to 5.

Notice that nowhere in the diagnostic classification are blood tests mentioned. That is because it is not uncommon for values for SED/ESR rates and other measures tested for in similar rheumatic diseases to be normal or near-normal in Behcet's. Having a negative HLA-B51 tests means nothing; you can still have Behcet's. Therefore, blood tests are unreliable markers of either presence of disease or degree of inflammation in Behcet's.

I have research links showing that these tests are not useful in BD, so if you need a copy for your doctor(s), just let me know.

Doctors may continue to order blood tests because they do things out of habit, but the results are not useful and should not be used in including or excluding a diagnosis of Behcet's. Lab tests for Behcet's patients are best used to monitor side effects of medication, organ function, and markers of concurrent diseases (anemia, thyroid, infection).

Results of biopsies and scans (CT/MRI) can also be negative or inconclusive. That doesn't mean we don't have BD. However, those tests can be useful to rule out other conditions (herpes, MS, other skin inflammatory conditions, etc.).

Still, we continue to run into doctors who insist that we can't have BD if we don't have _______(fill in the blank), even though this has nothing to do with the diagnostic criteria. Their concern should only be whether we score 4 or more points over a period of time and other diseases have been ruled out.

Anyone who's dealing with doctors who continue to fight against the diagnosis should give them a copy of the full 2013 ICBD paper, available as a document on the Yahoo behcet-support website. I'm certainly giving copies to my doctors even though I have a confirmed diagnosis, in hopes that it can help future patients.

4 Replies

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  • Thanks for the info

    Can you give us the link to the 2013 ICBD paper please

    Andrea

  • Yes thank you so much for all this good info. Too bad my rheumatologist hadn't read any of this because he didn't give me a definitive diagnosis of Behcet's until my blood work had come back showing that I tested positive for the HLA-B51 genetic marker. It really makes me wonder then what would have happened if I hadn't tested positive? Would he still have diagnosed me, or change his mind and try telling me that there was no way it could be? He seemed to be relying heavily on that gene to diagnose me, which really makes me think that he has the wrong info about this disease. I can understand a doctor doing this test just as another criteria to help with the diagnosis, but it cannot be used to give a positive or negative diagnosis of Behcet's. I now worry that if someone else comes into his office with Behcet's, but doesn't know they have it, if he'll do the same thing and rely on the HLA test. I just lucked out and thank God that I did test positive for it because otherwise I could still be laying in a hospital bed screaming in pain, not knowing what was going on and having every doctor and nurse think I'm crazy. Actually, if I was still undiagnosed at this time, I would probably be locked up in a rubber room somewhere...

  • This is really interesting......a link to the paper would be great.......my rheumatologist is still saying no can't be....even though all the other consultants I've seen say otherwise! Would be good to take this to him at my next appointment.....

  • At this time, for patients to get access to the full article, you'll need to join (for free) the largest English-speaking Behcet's support website:

    health.groups.yahoo.com/gro...

    Follow the directions. When you are approved (takes one or two days), log in and click on "Files" on the left. Look through the list of files (they're not in chronological order) for the PDF document added on March 17, 2013, and click on it. Now you can read the full article. It's fairly long with lots of charts, references, and authors. Click on the symbol for "full page" and you'll be able to see it larger and print it out for yourself and your doctor(s).

    If anyone in this group OR your doctor (or his/her office) has paid access to Wiley online documents, then give him/her this link to log in to read/print this article:

    onlinelibrary.wiley.com/doi...

    Also available to paid subscribers at:

    J Eur Acad Dermatol Venereol. 2013 Feb 26. doi: 10.1111/jdv.12107

    "The International Criteria for Behçet's Disease (ICBD): a collaborative study of 27 countries on the sensitivity and specificity of the new criteria."

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