Behcet's Disease Support Group
Behcet's disease (also known as Adamantiades-Behcet's disease), is a chronic condition due to disturbances in the body's immune system. This system, which normally protects the body against infections by producing controlled inflammation, becomes overactive and produces unpredictable outbreaks of exaggerated inflammation. This extra inflammation affects blood vessels.
Hello everyone, I am new to this. I just recieved news that I have Behcets after I was told that it was SLE first. I have the HLA B51 Gene. Last year I had a bad neurological attack and a pychosis episode and thats what lead them to think I had lupus. I was put on Plaqunil and then got pericarditis and they put me on prednisone and now a few weeks ago I was put on Imuran. I thought we were treating lupus, I got a second opinion from another Rhumatologist who did all the genetic testing. He called me just a few hours ago to tell me thats what he found. I also still have quite a lot of inflamation going on so he said that he will write my rhumey to tell him that I should be on a higher doseage.
Honestly I feel like I am reliving the first diagnosis, I dont even know what to feel except for scared. I dont know what to expect I just got used to the idea that I had lupus and now its not.
I dont have vaginal ulcers, never did. I have had foliculitits since I was 12. I dont have heart issues except for the pericarditits. I have had mouth sores but nothing like Ive seen on the internet. My eyes they hurt so bad and I keep complaining to my eye dr who says he dont see anything. He gave me some eye drops for inflamation. My biggest issue is the eyes. I thought I had sjorgrens because the schwimmers test was zero in both eyes. I dont make tears at all. The restasis helps some but if I use it twice a day my eyes leak.
I have had nerological issues but a clear MRI, when my attack happened they first thought I had MS, did any of you get that? I couldnt walk straight, think straight, I had to quit school because I couldnt form a tought that made sense.
I felt so alone with the lupus thing and now I feel even more alone because this is more rare. I dont know how I have the gene for this. My moms family is from Ireland and my dads Germany.
So am I gonna die? (I know one day I will but will this shorten my life) What should I expect? I have four small kids will they get it? I am on prednisone 5mgs, Imuran 50mgs and Plaquinil 400mgs does that sound like the right treatment? Does Behcets cause a positive ANA? I had a 1:160 a positive SSA which is why they thought it was lupus. UGHHH I dont know what to think! Please help :(
Jen
Honestly I feel like I am reliving the first diagnosis, I dont even know what to feel except for scared. I dont know what to expect I just got used to the idea that I had lupus and now its not.
I dont have vaginal ulcers, never did. I have had foliculitits since I was 12. I dont have heart issues except for the pericarditits. I have had mouth sores but nothing like Ive seen on the internet. My eyes they hurt so bad and I keep complaining to my eye dr who says he dont see anything. He gave me some eye drops for inflamation. My biggest issue is the eyes. I thought I had sjorgrens because the schwimmers test was zero in both eyes. I dont make tears at all. The restasis helps some but if I use it twice a day my eyes leak.
I have had nerological issues but a clear MRI, when my attack happened they first thought I had MS, did any of you get that? I couldnt walk straight, think straight, I had to quit school because I couldnt form a tought that made sense.
I felt so alone with the lupus thing and now I feel even more alone because this is more rare. I dont know how I have the gene for this. My moms family is from Ireland and my dads Germany.
So am I gonna die? (I know one day I will but will this shorten my life) What should I expect? I have four small kids will they get it? I am on prednisone 5mgs, Imuran 50mgs and Plaquinil 400mgs does that sound like the right treatment? Does Behcets cause a positive ANA? I had a 1:160 a positive SSA which is why they thought it was lupus. UGHHH I dont know what to think! Please help :(
Jen
Welcome to this support group. Having this disease does make you feel very alone. It is a very rare one, but you now have a diagnosis and a rheumy who should know how to treat you. You have won ar least half the battle. Kowing what you have..
It has been a long road for you and l do not feel surpized it has been mis daignosed. It is a hard to both treat and diagnose.
There a few menbers on this site ( take note Astro ) who have had eye problems, perhaps you ,can get suggestions from them. I have been fortunate and not experienced the eye problems.
Immuran and prednisoline are also used to treat behcet,s. However you dosages amy need to be played with until it siuts you. I am on methtrexate and prednislone. Fairly similar to what you are takeng. The dosage for the prednisone has been as high as 150 and as low as 1. Methtrexate is on 20.
You will not die, as you are beint treated.
Take care and sorry it has taken so long for answers.
Lorna .k.c
Again welcome to the support group :). As Lorna said, just because you have a rare disease that doesn't mean you have to be alone. As far as I've read, Behcet's very very rarely affects the life expectancy of a patient. As for your eyes, do you have vision problems or only pain? Do you have floaters? Is your central vision (reading vision) distorted or blurry? Or is it just the pain? From my experience, given that I have had many problems with my affected eye, your doctor should be an ocular immunology specialist who has a good experience in Behcet's disease and other inflammatory disorder. Finding a good ophthalmologist is vital. Do not settle for any recommended eye doctor, unless they meet the criteria required in someone who can handle Behcet's. As for me, I have suffered from a brief episode of uveitis followed by a prolonged episode of macular edema. Unexpectedly, my uveitis was very easy to control; while my macular edema was not. I have been on Steroids, Imuran, Cyclosporine, and local Injections. However, nothing worked for my Edema. So, now I am waiting to start Interferon soon. My advise to you is that to ask your doctor about the kind of tests he has done already and maybe you should ask him whether he has given you any OCT scan. Ask him if all possibilities have been considered? Anyway, I understand that it is very frightening when you are first diagnoses, but we have no other option but to pull through. Take care and never hesitate to ask or share whatever on your mind. Finally, follow your doctor's orders closely. After all they are the ones to treat you, not anyone here on the forum. All the best.