Patient Comments: Behcet's Syndrome - Symptoms

What were the symptoms of your Behcet's syndrome?

Comment from: Lyra, 35-44 Female (Patient) Published: December 17

I have finally been diagnosed with Behcet's and lupus by a local rheumatologist. I suffered from constant rashes, horrible infections, multiple hospital stays, genital and rectal lesions that were huge and so painful that would get infected (MRSA and staph) and I even had sepsis once. I have started on a course of treatment that is working well for me. I am back to work, just finished my PhD, I am back to running marathons and feel I have been given my life back. I thank my doctor for a good diagnosis and proper medicine dosing.

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Comment from: 35-44 Female (Patient) Published: October 26

I have suffered with Behcet's Disease since I was 19 (I'm now 43). It began with oral ulcers, extreme fatigue, and erythema nodosum lesions on my legs. After having a hysterectomy my Behcet's caused me not to heal internally allowing my intestines to prolapse into my vaginal canal twice. I ended up having multiple surgeries and spending 90 days (3 hours a day) in a hyperbaric chamber to induce healing. I have also had small vessel vasculitis of the foot and hand as well as genital ulcers that are relentless. Any kind of stress or trauma causes me to flare.

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Comment from: Squaw227, 45-54 Female (Patient) Published: October 28

I was diagnosed with Behcet's syndrome. I've been suffering with migraines. Recently I went to my ophthalmologist and he explained my problem. The pain is always behind my left eye, then it goes to my ears and then wraps around my head. He said what's happening is my brain is swelling behind my left eye and hence the beginning of the migraine. But, lately I have ringing in my ears and it drives me crazy!

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Comment from: Carole, 55-64 Female Published: June 04

My mother had Behcet's Syndrome. My younger sister and I were so young we don't remember how she got it or when she actually got it. She initially went blind and suffered from severe headaches. She also had ulcers in her mouth and on her genitals. It was horrible watching her suffer for the 12 years that we were aware of the disease. My mother died at the ripe old age of 53. I have three siblings and none of us has Behcet's but my older sister has primary progressive MS and I have ulcerative colitis.

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Comment from: female Davis , 35-44 Female (Patient) Published: February 07

I am 42 years old and I have suffered with behcet's since the age of 6. I had mouth sores almost always as a child. I had my first vaginal ulcer at age 12. My symptoms stopped with the pregnancy of my first child. I was 18 years old then. My symptoms returned one year after the birth of my last child. I was 32 when the symptoms returned. All four of my children have been diagnosed with behcet's syndrome. To my knowledge they are the only siblings in our country. We were all diagnosed by the doctors at pediatric hospital in Nashville,TN. I no longer have mouth sores. I still have vaginal ulcer. I suffer horrible uticaria, and have psoriasis. I have suffered with migraines my entire life, and am very photosensitive. I am unable to work because of the painful hives and painful swelling above and below my joints. I have a very good MD THAT'S been very supportive. I worked till the age of 41,' and am now afraid it is time to file for disability. This scares me. All of my children so far are striving, and I've always tried to make this disease work around them.

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Comment from: katty, 25-34 Female (Patient) Published: June 04

After spending 25 weeks straight in hospital they diagnosed me with Behcets, I suffer from mouth and Genital Ulcers, joint swelling and server pain, rashes, skin nodule's, and skin ulcers. This has now been going on for 19 months and no remission. I'm frustrated, but hopeful a mix of medications will work soon. I'm 28 year with 3 daughters they are all being tested for it now.

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Behcet's Syndrome - Effective Treatments Question: What kinds of treatment, including medication, have you found effective for Behcet's syndrome?
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