Behcet's Syndrome: What treatment has worked for you?

Hello Sheila (@mrmaind11), Welcome to Mayo Connect - I'm glad you found us. Thank you for being an advocate for your daughter. I am not familiar with Behçet’s disease other than to know it's very rare. The National Institutes for Health has a little information on it but you may already know about it:
https://www.niams.nih.gov/health-topics/behcets-disease#tab-doctors.
The UK's NHS website also has some information that may be helpful here:
http://www.nhs.uk/Conditions/Behcets-disease/Pages/Treatment.aspx
I'm tagging a few Connect members who have mentioned Behcet's disease along with a few others hoping they may have an answer or suggestions for you. @onmylastnerve, @linditz, @kanaazpereira, @hopeful33250

If you are comfortable with it, can you share what kind of treatments your daughter has already tried?

John

Hello Sheila @mrmaid11

Let me add my welcome to John Bishop's. I'm glad that you found Mayo Connect! I am not familiar with this disorder either, but I see that Mayo Clinic has some information on their webiste, http://www.mayoclinic.org/diseases-conditions/behcets-disease/home/ovc-20178984. From this description, it appears that the symptoms can include the eyes, the digestive tract, the skin and even the brain.

I also have a rare disorder, neuroendocrine tumors, and I certainly understand the frustration of having a rare disorder. If you or your daughter are comfortable sharing about her experience it would be helpful to know what kind of symptoms she has had and how this diagnosis was reached. How long did she have the symptoms before she was diagnosed? What type of specialist does she see for treatment? We look forward to getting to know you better!

Teresa

Hi
Tough deal for your daughter. I know someone with that disease, complicated by a combination with another equally rare and more difficult disease.
I wish I could tell you there's a simple answer, there's not though.
It's truly a systemic disease and many of the treatments given are more for pain management. There are some steroids that are sometimes used.
Prednisone colchicine Topomax Toridol, are some of the prescriptions involved in the past. Remicade was also considered but not attempted. (very expensive and again the treatments can sometimes be worse than the disease) I'm not an expert on any of them, and like you'll likely hear that effectiveness will vary on each individual. Some of those are pain management.
( What I'm going to say next is not meant to sound like a horror story I'm just being honest, and I hope it will be taken in the way I intend it, although it's hard to express in text)
Accept the fact it is incurable, don't go to a doctor thinking this one will cure, there is no cure.
Don't have a false hope that this doctor will "do it" the up and down emotional ride from that can be the hardest part, for the supporters of the affected, and the affected.
Some symptoms can be controlled/or minimized. You will likely see Neurologists and possibly Dermatologists, and Rheumatologists, one we saw was considered a local expert because he gave a speech on it once as part of a Paper he delivered to his peers.
Your area may have doctors with more familiarity than this area, you may need to explain to doctors what it is if you need to ie go to Emergency Room.
It's not fun to watch someone go through a bout of this. In major flare ups it can last days or weeks, but it will pass, and things will return to normal in between flare ups.
I wish you and your daughter all the best it's not a death sentence! It is life altering, but a reasonably normal life can be expected. Inform yourself when you can.
It's hard to explain it all in text, but it's ok to contact me if you wish. If you post here with my username I apparently get notified.

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.

It sounds like you're well into it, I thought maybe you were new to the situation. It's a long haul for sure. Doctors in general don't know much about it for sure. Glad your daughter has been able to get back on track, to a certain amount. Having a strong spirit and not giving in can go along way with this.

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

Thank you for your response. Hopefully the future will. Bring some more sussessful treatments for this illness. In the meantime we must learn to treat our bodies kindly and carefully listen to the messages they send us. During flares the optimism wanes but returns once the flare is over.

Hi @onmylastnerve

Welcome back, @onmylastnerve! Thank you so much for answering our shout out to you. Can you believe it's been 5 years since you wrote about Behçet’s on this forum? Do keep in touch and thank you for all the support you've offered.

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 💙

Hello @senlw, welcome to Mayo Clinic Connect. Thank you for sharing your story and joining in the discussion. It really helps when members with the same or similar symptoms are able to share with each other and know they are not alone. I don't have Behçet’s but do have several other autoimmune diseases and have found that I just have to take it one day at a time. Is there anything that helps you get through the bad days?