Patient Comments: Behcet's Syndrome - Symptoms

What were the symptoms of your Behcet's syndrome?

Comment from: Lily, 35-44 Female (Patient) Published: August 12

I was diagnosed with Behcet's syndrome in 2014. My symptoms consists of ulcers (mouth and down below), erythema nodosum, eye inflammation, stomach pain, headaches, back pain and fatigues. I have been on azathioprine, steroids and vitamins for a year. I am visiting my general physician (GP) every couple of weeks for blood tests and a specialist consultant every 4 months. Still working on getting the right dose for my medication, my white blood cells are very irregular due to the side effects of Imuran. We are trying a new low dose which I am hoping will help. Being a single mum with two very active kids who are below five is a challenge. I was hoping to return to work but I was so disappointed and frustrated when my last blood test in the beginning of August was so low that my GP was worried about my health. She called me and advised me to keep a close eye on my health and that I should watch out for any infection because I will have to be treated like someone who is going through chemotherapy. I am feeling ok and I am getting a lot of support from my family and friends. I am hoping that we get the right dose for my treatment and I can get back to work.

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Comment from: andesign, 35-44 Male (Patient) Published: June 15

I am a 41 year old male with Behcet's syndrome. I have had gastrointestinal problems and external ulcerations. I recently self-started prednisone due to what I perceived as a possible eye involvement. The general physician is suspecting temporal arteritis. I have not been able to get a confirmed diagnosis due to low ESR and CRP in blood and no specialist will do a biopsy with the low blood counts. I had the blood tests on the third day of steroid use. The advice from the ophthalmologist is to stop the steroids and see what happens and retake the blood test one week after steroid stopping. The symptoms I have been experiencing include stabbing pains in both eyes intermediately as if in different spots, pain behind the eyes and in the temples, pain in the jaw intermediately, not necessarily after eating and numbness on the right side of my face. The right eye pains have also been more predominant. The prednisone did appear to dampen the symptoms, I have taken 50 mg a day over the period and am weaning off.

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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: Sharon, Female (Patient) Published: August 19

My gynecologist believes I may hay Behcet's syndrome due to the reoccurring sores on my tongue and the roof of my mouth along with a burning sensation at the back of my throat.

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Comment from: susanrhona, 55-64 Female (Patient) Published: May 07

I started getting mouth ulcers at around 3 years old, and as a teenager the sores got worse, I had joint trouble, and I would sprain my ankle stepping of a sidewalk. The genital sores started after my child was born, I had lesions on my head, and multiple infections. Unexplained symptoms, now I am getting more frequent genital sores. I have always had frequent mouth sores, now I have an unexplained rash between my shoulder blades, small of my back and across my stomach at waist level. It was very red and itchy for 3 days, now the itch has lessened. I am fatigued most of the time. I wonder if these might be symptoms of Behcet's syndrome.

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