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Old 05-01-2010, 10:07 AM   #1
Join Date: May 2010
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4info HB User

Hello! When I was at the Dr. Monday she sent me to the rheumatologist to be checked for having Bechet's disease, due to genital blisters and a history of recurrentRecurrent cystitis mouth ulcers, on top of the lupus she had diagnosed me with about 5 years ago. The rheumatologist said that since the ana was negative on the bloodwork my Dr. did a few weeks ago, that it means I don't have lupus. He said the ana can never be negative with lupus. I told him my Dr. Internist said after it was originally positive, and you have the other criteria, when it later becomes negative that means the plaquenilPlaquenil sulfate is controlling the lupus, that once you have been diagnosed with lupus you will always have lupus. He said I obviously have arthritis and seems to think I have a different auto immune disease or diseases and Bechet's, that bechet's has a lot of the same symptoms as Lupus. He is doing more bloodwork. Does anyone have any experience or information, I am confused and don't know what to think. Thanks!

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Old 05-01-2010, 05:22 PM   #2
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Re: Lupus/Bechet's?

4info, hi & welcome. I was told ANA can be negative in lupus for at least these two reasons (there may be more?)
(1) The very low-odds form defined as ANA-negative and Ro-positive, called Ro-lupus. (I found this out the HARD way! )
(2) As you wrote, I was told that meds also can push ANA negative.

I had recurrent cystitis, sporadic genital ulcers (biopsied to no avail), GI problems, migraines, and a whole lot of other things. The only autoantobody I ever tested positive for was anti-Ro---p,lus I had MANY years of the photosensitive ring-shaped, nonscarring rash called SCLE (subacute cutaneous lupus erythematosus) that correlates strongly with the anti-Ro autoantobody. I was fianlly Dx'ed with Ro-lupus, by a rheumie affiliated with a metro teaching hospital.

I know very little about Behcet's, like what tests suggest it, and how its symptoms distinguish it from lupus. Has your rheumie explained anything about it? Anyway, I hope you post more soon. Meanwhile, sending my best wishes, sincerely, Vee

Old 05-02-2010, 01:15 PM   #3
Join Date: May 2010
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4info HB User
Re: Lupus/Bechet's?

Thanks Vee!

Old 05-13-2010, 07:26 AM   #4
Join Date: May 2010
Posts: 1
lalan HB User
Re: Lupus/Bechet's?

I have Behcet's...It is sometimes very difficult to get a diagnosis because there is no one confirming test and it is rare in the US and many doctors (including rheumies) know very little outside of their medical school books...The disease also presents a little differently in western cultures than the more commonly diagnosed Eastern cultures.

I was finally diagnosed with Behcets after biopsies of my mouth and genital ulcers...I think the biopsy shows differences between lupus and BD. I've also had a negative blood marker test for Lupus, so it was ruled out.

The biggest symptom with BD is the mouth sores. If you think you might have BD, you should see an eye doctor to see if uveitis is or was present. (50% of BD pts have eye problems). I don't have eye problems, but have had weird skin (zit-like) issues as well as genital ulcers (looking like canker sores) and arthritis (which in BD is due to inflammation and not degenerative . All 4 issues (which can come and go for years before reappearing): eye, skin, mouth, genital issues can give a complete diagnosis for BD. However, many BP have what's referred to as an incomplete diagnosis if they are missing one of the main symptoms.

Anyway, the treatment for BD might be a little different than lupus, but is a trial and error process with drugs and each pt is different. I am now working with a naturopathic Dr who has found that I have had extreme IGg sensitivities to certain foods that may be triggering my symptoms and also have abnormal neurotransmitter levels....I'm hopeful to keep my flareups under control with the right diet, supplements, and stress levels instead of meds...

Good luck with your diagnosis and symptoms! You have my sympathies!

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