Patient Comments: Behcet's Syndrome - Symptoms


What were the symptoms of your Behcet's syndrome? Submit Your Comment

Comment from: Victoria, 55-64 Female (Patient) Published: October 01

My symptoms are complex. My main source of current pain is the advanced viral keratitis in my eyes. I suffer from keratoconus, but after 2 successful corneal grafts in the 1980s, they're now in breakup mode. My Behcet's syndrome was only diagnosed in 2008, no treatment, but I saw the internal medicine specialist yesterday and am now at a loss. He has no relief to offer, given that steroids have been excessively prescribed in the past. He doesn't recommend it, due to my weakened eyes.

Comment from: Princess, 55-64 Female Published: May 01

I had severe pain on my upper left/middle part of my belly around my ribs through to my back. I went to the emergency room (ER) and got a Zofran; No pain medications. I got a CAT scan. I am in severe pain still. Finally I got 2 Vicodin tablets. I was in the hospital for hours. Finally I was told I had stomach ulcers and small intestine ulcers. I was sent home in pain still with 4 prescriptions for stomach stuff to last one week, no pain medicines. I also had a referral to a gastroenterologist. I was supposed to be seen 4 to 5 days later. This was 3/31/18. I have no medicines left. There was a mistake from the primary care physician (PCP) on referral. I get a new PCP 5/1/18, thankfully. I have had pain since, but was treated poorly in ER. I need additional tests. Don't know what to do. I have a painful, burning, stabbing sensation. The doctor in the ER thought I was faking illness until he got CAT scan results. I am waiting patiently for PCP appointment. I have having ulcer attacks, and no medicines.

Comment from: Vacation, 35-44 Female (Patient) Published: October 27

I was diagnosed with Behcet’s syndrome 2 months ago. For the past 10 years I have had different degrees of eye inflammation, swollen joints, mouth sores and cramps/spasms everywhere. Now for the past 2 plus months I feel like I have the flu, cannot clear my eyes up, fatigued, cramps that are debilitating all over my body with no relief. I am on 60 mg prednisone, 0.6 colchicine TID and methotrexate 15 mg once a week.

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.

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.

Comment from: Bela, Female (Patient) Published: April 12

The level of potassium still remains low after 4 days treatment of the patient on drips for hypokalemia.

Comment from: Abdominal pain hedac, Male (Caregiver) Published: November 17

I have pain in lower chest area, in the middle, and heavy headache and vomiting. Now I am 39 weeks pregnant. Yesterday night I had some cottage cheese food and after eating within 2 hours pain started. I am concerned it is pancreatitis.

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.


The term arthritis refers to stiffness in the joints. See Answer
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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

Comment from: AuntS, 25-34 Female (Caregiver) Published: July 12

Our nephew was diagnosed about 4 years ago. His ulcers were so bad in his mouth and gentials, and he became blind. He suffered a lot in the last 2 years and this last out break was really really bad. He died July 6 at the young age of 28. We will miss you and loved you so very much.

Comment from: Colorado, 55-64 Female (Patient) Published: July 05

I was diagnosed with Behcets a year ago, after suffering from the red blisters on my thighs, that ulcerated and would not heal. I was also extremely sick, headaches, dizziness, and unable to stay awake for more than a few hours at a time. I have always been very physically active, but had no energy at all, I felt at one point that I was dying. I was fortunate that at this time I was actually living in the middle east, and went to a doctor who is familiar with Bahchets and its treatment. I was put on a large dose (shot) of penicillin and colchitrane for 4 months, at which time the disease went into remission. Unfortunately, it is now back, and I am no longer in the middle east. I now have some of the sores or blisters around my mouth, outside and inside and my joints are very sore.

Comment from: Nebraska, 19-24 Male (Caregiver) Published: March 18

Our son has Behcet's Syndrome, which we already knew but had to go the the emergency room because he was throwing up blood. After being scoped he has a bleeding ucler.

Comment from: Stevo, 35-44 Male (Patient) Published: March 15

I was diagnosed with Behcet's Syndrome about 2 months ago. Had 3 horrible episodes and having #4 right now. Awful sores in my mouth that would bleed for over a week permitting me to only drink smoothies. I would also get an awful rash which would go away after 2 weeks. Always got the outbreaks when I was sick or under the weather. Last one was so bad went to Emergency Room. Taking Colchicine now but obviously that didn't work. I have a team of doctors looking into this problem for me but honestly it simply feels like I'm on my own ( although I know this isn't true). Anyway, going to see the Dr. today and hopefully he'll give me some good news. I am frustrated and tired.

Comment from: anonymously, 25-34 Female (Patient) Published: March 14

I was diagnosed with Behcet's syndrome on January 2010 after 5 incidents in the hospital. I usually got it after menstruation every 3 months. Symptoms: my whole body was very painful, my wrists were sore and my lips got swollen. My cheeks got red and usually after 5 hours my whole mouth was covered with blisters, sometimes I got it on my vagina also. It usually lasts a week.