Behçet’s Syndrome Community

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Looking for everyone's experience with Imuran?

I have a doctor's appointment in a few weeks and the Doctor wants to put me on imuran. Currently I take colchicine and prednisone and I am still experiencing oral ulcers and cold sores. I am interested in everyone's opinion as I've read some scary side effects. Thank you! I am so happy I've found this group.

I am under colchicine treatment: 1 tablet / day, only hlab51 negative. I concealed from my doctor that I had joint pain, afraid to take anti-inflammatory since my diseases that started from uveitis I caught homeopathy. No white sugar, less salt, no fruit peels, no coffee, no milk, no pepper, no green leaves, no tangerine. All day tea with ginger and turmeric, my situation is stable for the moment, joint pain disappeared. I feel better now in my skin when I crouched before. I cannot get up now, I easily get up thanks to turmeric. I hope that my testimony can be useful to you. Good health to you

Thank you so much for your advice! I really need to give up coffee and sugar, I know that will help. Thank you!

HELP inflamed tongue!

My daughters tongue seems as if the taste buds themselves are swollen and painful. She said they feel hard as well. Anyone experience this? We are waiting for call back from doc! Thanks!

Thank you so much for that tip! I will definitely give it a try! God bless!

There are some really good steroid creams for mouth ulcers. I'd ask the doctor for some. It's not a replacement for oral meds but it can really, really help with mouth ulcers, swelling, lesions, etc.

The skin of the fruit causes ulcers and canker sores. It is written in the book of Pierre Godeau (medicine treaty)

eye pain

Hi all, I've never had the serious eye problems but have sometimes had eye pain/fatigue. This week, though, my eyes became very inflamed. Turned red and swollen and watered like crazy. After 2 days, the redness and most of the swelling has gone but I'm still having pain. Is this an eye flare? I cant decide if its a big enough change to go into my dr. He is 1.5 hour drive from me. Can anyone tell me if this sounds like how Behcets has affected their eyes? Thank you! I've gotten so much from everyone here!

I am francophone I will try to do my best for my comments i have had pains with my eyes in the last years but not very much somtimes with a little yellow grain like in one side of the eye at a size of one semoulina this is before. I have behcet until this last novemder i had an uveïtis (uveïte anterieure)it comes without pain you but the eye was red as medecin i took atrpine indocollyre tobradex and virgan for three weeks after that my my eyes were recovered and my vision too but the pain comes and goes for three months and i had this little yellow grain againmy ophtalmo gave me (dicloced)if i have this trouble again especially I should travel now iam ok no trouble no pain check up twice a year my doctor (the internist)told me to do my self exercice at home to check my vision after you have pain if you notice some change go to the ophtalmo i forgot to tellyou that since my uveïtis i take curcuma and ginger with some saffran petals because they are good for eyes in short and long terms i hope tthat my experience was helpfull and have a nice eyes

Hospitalized?

I've been hospitalized due to ulcers getting infected. My body does not respond to antibiotics and I always require emergency surgery. It's getting worse every year, and this last time I was hospitalized 16 days. Has anyone else experienced this?

That's awful. I had TERRIBLE sores several years ago (before I was diagnosed) on my vulva and in my mouth. None of the doctors I saw could figure out what was wrong. I lost about 50 pounds because I couldn't eat. Luckily, I went to an ENT that had seen Behcets once before and he referred me to a specialist. By that time, I did have a serious secondary infection in my mouth. But this is where my story is different because, although I had to go through several rounds of very strong antibiotics, the infection was cured and I didn't end up hospitalized. And then the docs were able to treat the Behcets. I havent had a serious secondary infection in a sore since then. I can only imagine what you're going through. That was a very dark time in my life. I will say that I'm pretty diligent about trying to keep a good bacterial diversity in my gut. Meaning, I'm pretty keen on probiotics. I eat a healthy yogurt with live strains. And I make and drink my own kombucha (a probiotic tea based drink). I think this has helped because good bacteria can fight bad bacteria. Its made a very big difference for me.

Thank you for your advice. I eat a lot of yogurt, and have been hesitant to drink kombucha as I read it's not good for people who have compromised immune systems, but I think I will try it. It's been exactly a year since I was in the hospital from the secondary infection from the vulva sore's I've had. I've had at least 10 surgeries over the last 15 years and it doesn't matter what I do, each and every time the ulcers abscess and need to be removed. I've suffered my whole life (40 years) and last year was the first time they figured out it was Behcet's. (I too lost a lot of weight from mouth sores) It's been a tough road, and I am praying that with the medications I am taking, it will never happen again. I honestly felt like I was going to die last time. Thank you for the info Chelsie, it's good to know I am not alone!

I don't fit the "profile"

Although my doctor is hesitant to give me an official diagnosis, I had a positive pathergy test. I have oral ulcers, muscle pain and weakness, sores on scalp, extreme fatigue, episcleritis, extreme flushing up to four hours, dysautonomia, blurred vision, constant headaches, migraines, and joint pain. I have been tested for everything under the sun. I have extreme vitamin D deficiency. I had a false positive Lyme test and been cleared by pulmonary and cardiology. I once had a positive RF test, but every time since has been negative. I always have negative ANA tests so Lupus, Sjorgens, etc has been ruled out. Once I had elevated C Reactive Protein, but not since. Doctors look at me and say, "You look like your are northern European. How can you have Behcets? You don't fit the profile." But then they see that I have had a positive pathergy and I respond quite well to steroids. Two of my doctors say they have no explanation other than Behcets. Am i crazy? Are my doctors? I just don't know what to to think anymore. i have such bad brain fog and pain at the moment I cannot even function.

All, I can say is it took years for my daughter to get diagnosed. We knew she was different from the time she was 10 and from there it went downhill. Rashes,joint pain,ulcers in her mouth,genitals, rectum,and cervix. She has beg. Ana beg. Rh, positive pathergy, and positive hla b 51. It is really just a process of elimination. If you feel you are not getting the attention and treatment u need. Doing be afraid to switch doctors. Never give up and though it feels you may be crazy and doubting yourself you are not! We got our diagnosis when she was 14 after numerous doctors and false diagnoses. So dont stop pursuing your diagnosis! Best of luck! Keep us updated!

Behcet disease is difficult to diagnose for the doctor, he has to have a lot of confidence in himself and because it is idiopathic, this disease doesn't follow rules, for me all my analyzes were negative and a lot of doctors said it wasn't behcet except one who had the courage to tell me I am at 80%. In spite of the fact that I hid some information during the diagnosis, today I take colchicine only and I feel better than better, congratulations to my courageous and competent doctor

Hi, I didn't fit the profile either. I had atypical Behcets for years. Didn't get diagnosed for years but I responded to treatment. Recently, I've started having more of the typical experience. I'm not a doctor, but your description sounds very similar to mine was at first.There are docs who know Behcets and docs who don't and its a world of difference. Find a doc that has dealt with this disease before. That's my advice.

behcet_spain
moderator

Share the official 2015 Rare Disease Day video

Hi everyone,

Another year, here you have the 2015 Rare Disease Day video.

Spread it out ¡¡¡

"Day by day, hand in hand"

Best wishes for all.

https://www.youtube.com/watch?v=zQIeiQ7S6tQ

Gon.

Mirta
moderator

Thank you! Great job!!!

Ringing in the ears

I have a permanent ringing in my ears; what to do?

I am unable to stop the whistling and buzzing in my ears. I need a solution please

I did some research as my mother in law had the same thing its called tinnitus! Best natural things to try are cutting out caffeine, and not smoking as much if you are a smoker! My kiddo actually just listens to music at a lower volume with ear buds! I know this may not be of much help but I to have had that before and it is quite annoying! My go to is relaxation cds or sounds of nature! Good luck and god bless!

Hello; Ear to squawk; You have to take on an empty stomach in the morning and once in the evening grapeseed powder day.

Thank you , I will try this . merci infiniment