Communauté La maladie de Behçet

Discutez ensemble avec d'autres malades touchés par La maladie de Behçet, leurs familles ou dites-nous juste ce que vous avez sur le cœur.

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What helps the skin problems?

I have the red blister looking bumps and then they burst and create a giant ulcer with redness around it. It also seems to drain a lot of clear fluid regularly. The area around it becomes all raised and bumpy. The steroid cream does no good that I am taking. I take epson salt baths and use neosporin regularly. They take so long to heal. I am so embarrassed by them. Please say someone knows something that helps. I am desperate. I am seeing a specialist in the morning. I am so upset about the skin issues.

Thanks guys!! I will def try this stuff! luckily my flare is down.

Enbrel can be helpful. They supply it for about 10 dollars. While it worked, i did
experience side effects.
Small injection of prednisone into the legion will help also.

Fluocinolone cream is a good steroid for topical use on skin lesions. Nothing beats steroid though you don;t want to ingest them unless you really need to.

Facial Swelling, Tinnitus etc in Bechet's Disease

As a treating physician and clinical researcher, I have treated a patie t with otherwise unexplained facial swelling and 'normal' jugular veins who nevertheless had dramatic reduction in facial, tongue, and neck swelling. Jugular venous outflow was the contributing cause. Since then, she indicated that is a greater-than- recognized condition in Bechet's Disease. To that end, I am opening a discussion about this, about abilities to possibly help and treat patients, serve as a resource etc. Ziv Haskal MD FSIR FACR FCIRSE, Prof of Radiology

It may (or may not) be that your jugular veins are contributing to you face and tongue swelling as well, as in my experience with patients. Tongue and facial swelling has improved beyond that seen with steroids etc. Consider if there is an interventional radiologist you might discuss this with.

Z Haskal MD FACR FSIR FAHA
Professor of Radiology/ interventional radiology
University of Virginia

Although it may be autoimmune in nature, this is not a classic part of Behcets Disease, and I have spoken or read about hundreds of cases. Many patients confuse symptoms w other things or other diseases. This would be a highly unusual presentation and I would not consider Behcets a first diagnosis.

true, Behçet's is considered my primary diagnosis but there are other things going on considered a secondary due to the systemic inflammation caused by the Behçet's. I just need a new body.

A Long Journey

Suffered for forty years with this disease. Took a caring cardiologist and a visiting med student from Israel to finally diagnose Behcets.

Tonsils and adenoids remived at age 5.
Have had IBS diagnosis at 16.
Ruptured right ovarian cyst and internal bleeding and surgery at age 20.
Cervical cancer and cone biopsy at age 25.
Right ovary, tube and appendix removed at age 25.
Myocarditis, left bundle branch block, cardiomyopathy at
age 27 after bout with influenza.
Gall bladder removed at 28.
Meningitis while 7 months pregnant at age 30.
Thyroid removal and radiation due to Thyroid cancer at age
43.
Continuous nausea and vomiting for 18 months at age 47.
Esophageal lesions at age 48.
Total hysterectomy at age 49 due to fibroids, anemia, excessive blood loss and suspect cyst on left ovary.
Left side of tongue removed at age 53 due to recurrent mouth sores, severe dysplasia and carcinoma insitu. Always have headaches.
Colchicine did not help mouth sores.
Chronic bladder infection so cannot take immunosuppresants.
Knee, back, wrist and hand pain and flare ups with arthritis.
Depression since age 17.
ANA is elevated.
Thought I was going crazy until diagnosis. Not being
followed up since rheumatologist retired. Had to insist on
new doctor.
I know this disease is rare but I hope there is more research
and knowledge about auto immune diseases so future
generations do not have to experience a lifetime of
suffering.

What a tough journey! I am so sorry you are suffering so badly. A lot of what you have written resonates with me. I can see that your immune system is chronically overworked and stressed, and that may be one reason for several bouts of cancer which is in the end a failure of the immune system to stop precancerous cells (which EVERYONE gets every so often) from surviving long enough to become cancerous.
I do not know if you have gone down the food intolerance route, but it has transformed my life. I discovered that gluten, wheat, milk, and eggs were conspiring to kill me. I was ill the whole time. I had over 40 symptoms. I had cancer. Doctors seem to have a knee jerk reaction against a dietary cause, but I have yet to be shown a decent scientific paper which shows that there is definitely not a dietary cause. I am a scientist. In the absence of any proof from the medical profession I have come to the conclusion that that opinion is an urban myth.
Do your own research. As a starter, look into tests for IgG's to environmental triggers like foods. One company that does these is called YorkTest.

Are there any teens 14-18 here?

I want someone who is around my age(16) who can talk about BD at our age.

I'm 17 & have Behcet's. I got sick when i was 13. I'd be more than happy to talk to you :)

Hi! I'm 18 years-old and Behcet syntoms appeared when i was mere a child (4 years-old) and i was not diagnosted until the age of 9 years- old as it's a really strange disease here in Argentina, where i live. Please feel free to talk to me if you need. I'll will olso like to talk with someone of my age that can understand how it feel to live with this desease.
Pd: sorry if i made any English grammar mistake but i'm still learning :)

Hi! Im 17, and was just diagnosed about a month ago.

Humira & Behcets

Wondering if anyone has been on Humira for Behcets &, if so, how it has helped. My son was diagnosed recently & every medication he's been on has caused terrible side effects. His Doctor is now suggesting Humira. Thanks for any thoughts.

robpleticha
modérateur

Hey Mom,

Humira is the drug commercial name, adalimumab is the compound name.

Here is an article looking at people with Behcet's disease treated with adalimumab. I think its worth a read.
http://www.medscape.com/viewarticle/771740

This article looks at treating uveitis associated with Behcet's disease, so this might be less applicable to your son's case if he does not have uveitis.
http://www.ncbi.nlm.nih.gov/pubmed/25005224

Here is an abstract of a pediatric case and use of the treatment:
http://www.ncbi.nlm.nih.gov/pubmed/20837311

I'll also send you a private message

Thanks so much for giving me this link. It was very helpful. I am hopeful that this drug may be of help to my son. I also hope that I might hear from some others who are actually using adalimumab in treatment of Behcets. Thanks again.

Insurance approval for remicade, embrel humira or orencia

I see people post being treated with some of these newer drugs, which are extremely costly. I have united healthcare insurance and they won't consider any of these drugs because they are not indicated for Behçet's . I have cycled through all the old drugs any they have all stopped being effective. Any suggestions from anyone successful in getting insurance approval?

robpleticha
modérateur

How is it going with your treatment? Any change with the insurance?

Anyone in the Atlanta area with Bechets?

I am from Europe, moved to the US in 96. I have suffered from Pelvic pain which spreads to my feet and have many large mouth ulcers nearly always present. I also have joint pain and an overall unwell feeling quite often with this. It took some 40 years to get a diagnosis and I am finally being believed. This more or less destroyed many jobs and helped wreck my marriage. I now take Imuran and steroids plus Clonazapam to control the effects of this illness. I would be interested to hear from anyone in Atllanta and anyone who gets Pelvic symptoms?