Patient Comments: Behcet's Syndrome - Symptoms

What were the symptoms of your Behcet's syndrome?

Comment from: Sadie, 55-64 Female (Patient) Published: January 25

I had many the symptoms of Behcet's disease, oral and vaginal ulcers, bowel problems, joint problems, skin rashes, blood vessel problems and fatigue, as well as nervous system problems for about 20 years before I was diagnosed. By that time I was very ill but had been told I was suffering from stress. Fortunately my eyes were not affected. Now I take imuran, (aziatropine) corticosteroids as a maintenance dose of 5mg rising with an acute flare up, nexium, ideos, difene, thyroxin, and multi vitamins as well as fish oil. I feel less ill but still this illness impacts greatly on my life. It is difficult to exercise, ot do more than one thing a day, to plan events etc. I also need to have an urgent operation but the surgeons are loath to operate on account of my condition. The statistics on prognosis are not good.

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Comment from: p, 35-44 Female (Patient) Published: October 19

I have had Behcet's syndrome for the past seven years. I had mouth ulcers, headaches, vaginal ulcers, joint pain, lesions on my legs and eyes, but doctors never put them all together. At 27, I had my first stroke and lost my eyesight. I was left in a wheelchair. Then I was in the hospital for four months until everything came around six months later. I had another stroke and was in the hospital for four months again. I've had a few relapses since then, but none as bad. I am just getting better. I've even moved into my own house, and I am getting stronger every day.

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Comment from: Smudge, 35-44 Female (Patient) Published: June 22

With my Behcet's syndrome, I experienced mouth and genital ulcers, fatigue, stomach pain, weight loss, stiff neck, headaches, swollen knees, and eventually going blind. This was temporary and lasted for six months.

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Comment from: patty, 55-64 (Patient) Published: October 27

I suffered for very long time with mouth ulcers and genital ulcers headaches stiffness in my joints tiredness and my body always felt like I had the onset of the flu. It took a very long time to find out what was wrong, but eventually I was told it was Behcet's syndrome. I am treated with medication but Inever really feel well.

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Comment from: wheezer, 35-44 Female (Patient) Published: August 17

I have Bechets' syndrome with uveitis, oral and genital ulcers and protein C deficiency hypercoagulable state and lower extremity hyperesthesia. This is very painful. I have to go to the doctor 3 to 4 times a week because of my condition. I have been hospitalized so much until I have lost count. I have been paralyzed and I have had a stroke.

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Comment from: fellow sufferer, 35-44 Female (Patient) Published: August 09

I was diagnosed 16 years ago after several years (from the age of 12) of being ill with recurrent genital ulcers and suffered severe joint pain for years but the two were put down as seperate medical problems until it attacked or appeared in my bowels then it was considered as a behcet's case. At 35 I now have a good understanding of how my symptoms work and how to manage them but mainly through one extremely understanding GP who pushed my case and helped me research the subject.

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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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Comment from: Cooly, 35-44 Male (Patient) Published: December 02

I was diagnosed of having BD about a year ago. Prior to that l was attending a dental clinic to help the recurrent ulcers in my mouth. Later, l have to see a specialist who told me there was more to that than a dental problem. I am currently on 10mg prednisolone. I feel better now but the recurrence after a brief remission is a real bother. I ache in the eye and the mouth ulcer is threatening to be back. Hope l can get better.

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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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