Just found this site, we live in the US. My daughter is now 20 and has had Behcet's for 4 years. She was diagnosed last year by chance at her college by a fabulous dermatologist. She began with a genital crater at age 16 that was so painful she could not void and ended up on Percocet 2 tabs every 3 hours with topical lidocaine that barely touched the pain. She sat in an oatmeal bath for 3 days, and voided in the bathtub. It was the only way to avoid the screaming pain. We were told it was systemic herpes type 1 and was put on acyclovir. She caught mono at school and was horribly sick again. she has been hospitalized twice since the first breakout. She continued with multiple genital and oral sores to the point she couldn't eat or swallow. I cried as much as she did. Massive steroids finally helped and she was finally diagnosed. I am a nurse in Boston and never heard of Behcet's. I went frantic looking for info, asking all my doctor friends, they had never had any cases. Great. Ended up on the US Behcet's Association website and found a specialist in NYC, Dr. Yazici. Have seen him several times, and combined with her diagnosing dermatologist, she has ended up on Plaquenil and Minocin to control her sores. She cannot take Cochicine, it made her debilitatingly dizzy. She has been on this combo for 6 months, and she has only had one breakout since, which short term prednisone took care of. She also has not been sick,she got the flu shot and has been spared. Not sure if due to meds as well, but Dr. Yazici is very pleased with her progress. So we are wondering if anyone else has tried Plaquenil and/or Minocin therapy and what has been the response? I hear Plaquenil is not very accessible in other countries(?)
Good results with plaquenil / Minocin combination - Behçet's UK
Good results with plaquenil / Minocin combination
I'm quite new to the site and not had my diagnosis confirmed but Dr Yaziki has a marvellous reputation so I'm so pleased that your daughter has access to him. I often say thanks that I have become unwell with this and not my college age daughters...it must have been awful for you too watching her suffer like she has.
I am gaining some relief from colchicine, though it can really disrupt my intestines.
It's just great when people post with good news to pass it on....I am sure there will be a lot of interest in this post.
keep us updated on your journey, if you have time
Love Jill xx
Thanks for your story. Plaquenil is commonly tried here in low level cases. We call it hydroxychloroquine.
Thanks for the feedback. Our major question is whether the plaquenil (generic hydroxychloroqhine) will slow down or hopefully halt the progression? I know everyone is different in their response, which is the answer we always get, but has anyone had any experience with this???
Hi. How is your daughter? I see this is an old post and i hope she is so well that you do not even check this site, but if so, please let me know how she is...her story similair to my 13 yr old
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