Differences in Lupus and Behcets?: Hi! I was... - Behçet's UK

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Differences in Lupus and Behcets?

nicz profile image
nicz
11 Replies

Hi! I was just wondering if there are any clear cut differences between Lupus and behcets? I have no diagnosis as of yet, i'm simply interested to check out all options because I'm getting to the end of my tether with being ill!! I gather symptoms are well similar. Does anyone know what the possible differences are?

Thanks xxx

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nicz
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lesleyg profile image
lesleyg

Hi Nicz not sure myself but was talking with a doctor a couple of days ago and apparently to an immunologist there is pretty clear cut difference.

Lesley

andreafm profile image
andreafm

Because there isn't a clear cut test for diagnosis the Doctors have to rule out other possible condition and Lupus is one of them.

One of the differences is that many people with Lupus have a positive ANA blood test [although some don't] and this is not the case with Behcet's.

Other conditions that mimic behcet's are on this link from the Behcet's Society Website

behcets.org.uk/menus/main.a...

The main thing for me was to get the right medication for my symptoms.....There really isn't much difference in treatment with a lot of these autoimmune disorders.

I hope they get to the bottom of it soon for you as it really is frustrating and debilertating

Good Luck

Andrea

AusBehcets profile image
AusBehcets

I have Lupus-like symptoms, but my ANA is always Negative. Something like 3% of Lupus patients don't have Pos ANA. So it's still possible I may have Lupus, though my dsDNA is also Neg. There's also something called Drug-induced Lupus. I mostly get a Lupus-like rash when I have a severe drug reaction eg to Plaquenil and Low Molecular Wt Heparin like Clexane. I also get delayed photosensitivity reactions on my arms after taking certain antibiotics like Keflex.

So the Drs aren't sure I don't have Lupus. They aren't sure I do have Psoriatic arthritis (I don't have skin Psoriasis but do have a similar spondyloarthritis. My brother has skin Psoriais.) I'm Neg for HLAB-27.

Behcet's is being considered but my presentation is a little different.

I DO get the headaches, migraines & have had one tonic clonic generalised seizure. I don't have epilepsy b/c I haven't had 2 seizures!

I get other Neuro symptoms that are like Neuro-Behcet's.

I have eye inflammation & Dry Eye but not been diagnosed with Uveitis. I test Neg for Sjogren's, Polymyositis & Rheumatoid Factor.

I do have food allergies. Biopsy for Coeliac Disease was Neg but I still seem sensitive to wheat & gluten.

Have to see a Professor of Immunology/Rheumatology/Opthalmology to explore whether I have Behcet's & what the options are for treatment.

Lyme disease & co-infections are also possible diagnoses...so am looking into that too.

washuuchan profile image
washuuchan in reply toAusBehcets

There is no correlation between Behçet's and HLA-B27. I don't know why so many doctors are so poorly informed but the main genetic marker is HLA-B51. Another has been found that is associated w/neuro-Behçet's but it is not HLA-B27. That is for spondylitis. I forget the name of that allele but if you dig, you can find it (it has a longer ending) - might be worth looking into.

Hello,

Just as Lesley has mentioned, the biggest and most significant differences between the two diseases are seen immunologically. With Lupus, there are specific detectable antibodies that are found in the bloodstream (like the antinuclear antibody/ANA that has been mentioned and the antiDNA,,Anti-Ro,Anti-Lo, Anti-SM, LE cells, antiphospholipid antibody, Ccp, etc.), where as with Behcet's there are no known antibodies that can be detected. Some people with Lupus may also have a false-positive test for syphilis, and may also test positive for the Rh factor and antibodies involved in Sjogren's. Even though there aren't necessarily any true definitive tests that can be done to give a "positive" or "negative" diagnosis of Lupus, because there are always some degree of antibodies that will be found, it makes Lupus a much easier disease to diagnose-- Lupus is usually tested for when considering Behcet's because it can be easily ruled-out.

Behcet's is much more difficult because of the fact that there aren't any detectable antibodies, and often times tests that show active autoimmunity and inflammatory markers (such as Erythrocyte sedimentation rate/ ESR, low wbc, c-reactive protein/ CSR) are often negative or within normal range. However, sometimes when Behcet's is very active and there is tissue damage occurring, a test called "HDL" may be very high (this shows active inflammation/ tissue damage occurring systemically in the body), and is often used once a diagnosis of Behcet;s is made to help monitor disease activity.

With Lupus, these inflammatory markers may always be positive for showing inflammation, and other serum findings may include high IgA level, low complement C3 and C4 levels (especially during flares), low platelate count/ thrombocytopenia, low wbc/ leukopenia, and low rbc/ hemolytic anemia. Also, kidney damage is very common with Lupus which often manifests itself as high level of protein in urine (proteinuria).

Behcet's really only has one single blood test that is sort of disease-specific (the Behcet's genetic marker called "HLA-B51"), but the problem is that this is sometimes found in healthy individuals also and some with Behcet's may actually test negative. This is primarily a genetic marker for the disease which means that if a person has it, along with other predisposing factors (genetic and environmental), they are at an increased risk to develop Behcet's.

Other things that often differ between them include the ulcers-- Behcet's ulcers are painful and can occur anywhere, even inside the body; where as Lupus ulcers tend to be painless and usually only occur on the roof of the mouth or just inside the nostrils. The skin rashes/lesions tend to differ as well. Lupus has more disease-specific rashes like the "malar or butterfly rash" and discoid rash/lesions. Behcet's can cause any number of rashes, lesions, blisters, ulcers, etc. and they can differ so greatly from one person to the next (even in the same person, they may experience several different looking rashes overtime).

Another thing is that weight-loss is considered a symptom of Lupus, where as, Behcet's tends to cause weight gain because of severe, chronic swelling throughout the body.

I am so sorry Nicz to hear that you are still suffering without a diagnosis-- that is a very tough time to go through, just wanting to know exactly what is making you so sick.

Although many autoimmune diseases share similar treatments, some do differ-- Behcet's tends to be more difficult to settle down and often will require a combination of different strong meds, such as immunosuppressant, steroid, and a biologic drugs. They often use less toxic drugs like Sulfasalazine and Hydroxychloroquine with Lupus, but not so much with Behcet's. Also, TNF inhibitors like Remicade is now commonly being used in Behcet's, especially when other less toxic meds have failed, but it isn't used in treating Lupus. It is still a good thing to know exactly which disease it is because they each have their own specific risks-- like with Lupus, the kidneys are often the target organ and with Behcet's, the eyes are the target organ (although any part of the body in both diseases can be attacked at any time).

It also provides you with peace of mind once you know for sure which disease it is because then you know for sure (and so does your doctor) that you really are sick. I went a very long time (nearly 8 yrs) being sick and having no diagnosis, and there were many times that I was ready to give up on finding a name to call my mysterious illness-- but the problem with that was that I wasn't on a proper treatment plan or being monitored for complications, and often doctors (and myself) would decide that it didn't exist because there was no physical/ clinical proof of my illness. Once I finally got my Behcet's diagnosis, it really helped to lift so much excess weight off me and really gave me more strength to truly begin fighting back. So just keep on fighting :) and don't let the doctors discourage you and try to convince you that you aren't sick-- you know that you are very sick and that's what matters.

I hope that you get some answers soon,

Take care :)

-Jenna

I have SLE (lupus) it varies from person to peron.I get ulcers on my inner eyelids which is terrible painful to be awake all day I also get ulcers in my mouth and around my hairline and when that happens a lot of my hair falls out.Lucky i have very thick hair and its not very noticeable so far.. It has taken 30% of my vision from my right eye from plaqnile. I have to be on it because my tendons get attacked the worse. As far as organ damage I have a kidney problems (glomerular disease) that is from lupus but also chronic kidney stones cause by my parathyroid.Lupus arthritis causes pain, stiffness, swelling, tenderness and warmth in your joints. The joints most often affected are the ones farthest from the middle of the body, such as fingers, wrists, elbows, knees, ankles and toes. ... Muscle atrophy (wasting away of muscle strength) may occur if arthritis becomes chronic.My niece who is 10 had an appointment today and they believe she has this Behcets and she has not been tested yet.But her doctor thinks she has this.She has all of the symptoms.But for me having lupus they seem hard to tell so very similar.Maybe she has lupus like me.I wish she did not have anything but something is going on the poor girl is in pain.She lives with me and I notice she complains about the same exact thing that I have or have had.But then when I read about this on web md I was shocked by how similar they are.

AusBehcets profile image
AusBehcets

Do you mean LDH instead of HDL?

Oops.. you are right. Thanks for catching that. Yes I didn't mean the cholesterol, I meant to say LDH... two completely different things!

nicz profile image
nicz

Thanks for your replies guys, your kind words mean a lot..i am currently on the final strait of my degree and my illness is making it all the more difficult, so your kind words are much appreciated! Even my parents think im imagining it! It interesting what you say about weight loss/gain behcetshurtsbeyondwords because last week i went to get weighed for my contraceptive pill and the doctor was shocked when she said i had put on over half a stone since january!! I had thorough blood test for all immunity, bone marrow problems etc and the results came back all normal this morning! Will keep you informed how it all goes, thanks again! xxxx

5631205st profile image
5631205st

Don't know if you'll see this but here's a little input: My son diagnosed with Behcet's. My daughter diagnosed with lupus and fibromyalgia. Onset for both 40ish. I have fibromyalgia and am disabled because of it. I believe I have lupus but have tested negative. My mother was tested for lupus 7 times!! All negative, but her pain was awful too - not as tortuous as mine. I insist there is some genetic link...perhaps an exposure to something unknown somewhere in our history. The lesions in the mouth are similar. One gets it in the nose as well. One gets the sores in the area below known to be affected. It is a nightmare. We all get lumps in scalp. At this point we are still running to professionals and not getting anywhere. Prednisone used and then weaned onto colchicene. (colchicene has had good reviews). My dog's vet attended a seminar and told me to consult with a toxicologist and geneticist to seek causes leading to possible treatment. Hope this helps a little. We sympathize with this true curse upon our lives.

Herbiv4 profile image
Herbiv4

Hello there. This is a subject that interests me. I've seen a study paper about HLA B27 and B51. It has been known for a Behçet’s patient to be HLA B27 positive but B51 negative. It's also been known for a Behçet’s patient to be HLA B27 positive and B51 positive. Also B51 positive (most common) and B27 negative.

I've also seen it said that a Behçet’s patient can be both B51 negative and B27 negative.

Overall, the HLA Bxx markers are not seen as reliable.

This interested me because I'm B27 positive and it took 12 years before my Behçet’s was formally diagnosed.

The Centre in London confirmed I've been living with active Behçet’s for 20 years now.

Hope this is of use.

Stephen.

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