Patient Comments: Behcet's Syndrome - Effective Treatments

What kinds of treatment, including medication, have you found effective for Behcet's syndrome?

Comment from: MD, 35-44 Female (Patient) Published: June 10

I have been a patient of Behcet's syndrome and SLE (systemic lupus erythematosus) since I was 18 years old. Nobody could understand the disease till about 10 years ago. Now I am 40 years old. Bruise marks, ulcerations, body aches and photo sensitivity made me lose my mind but since I am on colchicine, I have been able to lead a normal life. Thanks to my doctor, I had to be on steroids for a very short span and have been able to control it on regular medication.

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Comment from: Lyra, 35-44 Female (Patient) Published: July 07

My current medication list for Behcet's is as follows and appears to be working well for me. Enbrel (50) IM weekly, Colcrys .6mg (3 x daily) Prednisone 7mg daily, Plaquenil 200mg (2 x daily). I am extremely sensitive to UV sun rays, particularly on my face. I will swell quickly (eyes, lips, and face) with very minimal exposure and the Plaquenil does appear to be helping some with that particular symptom. Genital, rectal, oral and nasal lesions are minimal. Joint pain is helped by Enbrel and prednisone. So thankful to have found medicine that is working well for me.

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Comment from: Theresa, 45-54 Female (Patient) Published: October 15

I am now 52 and I first had symptoms of Behcet's syndrome in my late teens. I had mouth ulcers before that. One doctor told me to use 1 tablespoon Mylanta + 1/2 capsule powdered Benadryl. I had to mix them together and swish in mouth as needed and then spit out. This worked for me. I also had a doctor cauterize a large ulcer under my tongue and that worked too. Sometimes my genital area burns and I slather it with mayonnaise and that works too. Today I put a lot of Mylanta on the outside of my almost golf-ball sized lump near my groin.

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Comment from: Amelia, 45-54 Female (Patient) Published: August 21

Me, my daughter, and granddaughter, all have Behcet's syndrome. I was probably born with it but all of my other family relatives i.e., parents and sisters have it. We also have under active thyroids and I was diagnosed a few years ago with non-Hodgkin's lymphoma and a suggestion that my Behcet's has now presented more lupus symptoms. The best overall treatment I've found to cope for ulcers is dissolving 6 Disprin/aspirin in 10 ml water, use as mouthwash holding in for 5 minutes, never swallowing. Sexual relationships suffer as skin contact just encourages ulceration. I wish there were more awareness and understanding of Behcet's.

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Comment from: Bev, 55-64 Female (Caregiver) Published: May 28

My sister has been diagnosed with Behcet's. She constantly needs blood transfusions and doctors have been unable to find bone marrow. She also has the other problems listed in these articles. She had to have part of her foot removed. She sees many doctors but has yet to find one who can help her. She is 60 years old and lives in constant pain.

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Behcet's Syndrome - Symptoms Question: What were the symptoms of your Behcet's syndrome?
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