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Behcet's Syndrome: What treatment has worked for you?
Autoimmune Diseases | Last Active: Oct 7, 2019 | Replies (22)Comment receiving replies
My daughter is 58 years old and was finally diagnosed
with Bechets at the Mayo Clinic 15 years ago . After a dental procedure she .
developed little painful sores in her mouth, thinking it was Herpes . As it got worse she went back to the dentist who said it was not Herpes but didn't know what it was. Developing severe headaches she saw a neurologist who suspected Bechets but wasn't sure. For some time thereafter the various doctors were puzzled, tried prednisone which helped reduce some of the inflammation. Her mouth cleared up and she then developed the same kind of sores in her vaginal area which were extremely painful..along with the ulcers she had severe joint pain and GI problems. Fatigue became a major problem. She is a professional but had to stop practicing and did so for 10 years during which time she tried methotrexate and Embrel. The Embrel helped some but it was off and on because the Embrel compromised her immune system and she got sick often which required that she be off the Embrel during that time. She is now back to work, tries to pace herself but continues to have periodic flares, breaking out, headaches severe fatigue, with no warning at all.
An interesting fact: when she was 16 she had encephalitis. When she in her first year of law school, right at exam time, she had encephalitis once again and was hospitalized. Much later on we found out that having encephalitis more than once was symptomatic of Bechets. Right now she takes meds for the pain for whole body arthritis like symptoms which cause inflammation through her body. There is no cure and so far she doges the best she can.
Replies to "My daughter is 58 years old and was finally diagnosed with Bechets at the Mayo Clinic..."
I definitely feel for your daughter I'm going on 13 years with this my best friend Behcet's Syndrome. Unfortunately you are no longer you it becomes you and it has made learn to live each good day to the fullest that's for sure. It's so hard to find anyone to talk to who understands nevermind a doctor. I've had it all still have it all as my doctors say we treat not me but the symptoms. Everytime someone tells me they are sorry for me I say why there are others so much worse off I wouldn't wish this crap on my worse enemy lol. I can't help but think i was made this I was made strong enough to handle all of this pain and misery so that someday when that 13 year old child gets diagnosed with this horrible unbearable at most times thing that just keeps trying to take over, but look at us were still here, there will be a cure and they won't go through one day of what we have to go through. Please do not get me wrong I lay in bed and cry and hurt nevermind move more often then not with the pain 1 md says stay on prednisone 1 says OFF there definitely is NO magic pill that's for sure and of course 1 pill turns into 3 and 3 into 10. Xrays MRIs blood work like I mean blood work!! I felt like a pin cushion for so long I am now seeing a new set of MDs so we will see how this goes....those of you on here who know how that it please wish me luck.....oh and the fun part they just found 1 round spot behind each eye and yup I'm 41 years old!! So if there is anyone out there who gets this like really gets this I would love to hear from you!! Please reach out to me 💙
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Hell @mrmaid11
It sounds like your daughter is dealing as well as she can with this disorder. I like what you said, "She is now back to work, tries to pace herself" that is a real important factor in living well with chronic illness - being able to know your limitations and pace yourself. That is great that she is able to work again as well.
While there is no cure for this disorder, she has definitely made progress. I'm glad to hear that Mayo was able to come forth with the diagnosis. It certainly helps to be able to put a label on problems, doesn't' it?
Teresa