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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
moderator

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
moderator

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

Food sensitivities with Behcets

After having Behcets for over 20 years I have realized that certain healthy foods like berries, nuts, mint, and alcohol trigger outbreaks predictably.

Have others noticed foods triggering Behcets outbreaks, how long after eating do they occur, and to what foods?

I did a study 10 years ago (I'm a dentist) asking Behcets patients what triggered their outbreaks, and many indicated nuts, but I didn't believe it. I used to eat a lot of pistachios and can not eat them anymore, perhaps a developed sensitivity.

But this is not the typical allergy manifested within hours, but takes one or two days where I get skin lesions, erythema nodosum, and oral apthous ulcers. This could be IgG mediated because it is a delayed sensitivity unlike an immediate one, though this mechanism is controversial.

I have done food sensitivity blood testing with totally inaccurate results, and other scientists have told me there is no good science behind those non-MD administered blood tests.

Have others noticed foods triggering Behcets outbreaks, how long after eating do they occur, and to what foods?

Thanks.

Im sorry... i have done it one way which was 0 meds involved, and was simple but hard for my life style, however was: Drinking water 1.5 litter a day + Drinking Mate (south american herbal tee 1 litter a day ) + consuming 0 alcol + very little sweets (a week 1 dark chocolate ) + a lots of vegetables + blue , black , red berrys + almost any fruits (no bananas and anything like bananas ) no red meat and lots of cold sea food + no tu much bread + 2 eggs every 2 days .... (result no meds 7 months no problems at all ) + found that at list 8.5 hour sleep + a little running ... 7 months no problems but was very hard for me to do and 0 mc donald or anything like that ... (if any one try it out do not forget vegetables include many different typ specially carrots .

Re: pitted fruits.....my Gastroenterologist has me trying a FODMAP free diet...to help alleviate the GI issues, (ulcers) which create IBS like symptoms. FODMAPS are a group of carbs (there is a great APP that can help guide you) that become osmotic in the small intestine and disrupt the bacterial growth and cause issues. I have had a decrease of symptoms, although eliminating the list of foods is not easy. Also, I paid for the HemeCode blood test, which tests your blood against 250 foods, results give you a list of moderate and severe intolerances. I have eliminated my intolerant foods and foodmaps now for 6 weeks with incredible results. Decreased .6mg Colchicine 3x dy to 2x dy, All BD symptoms has decreased -few to no ulcers, intensity & length of stay.

I was diagnosed with Behcet's almost exactly one year ago when I presented every symptom all at once. A few years prior to this I started developing a (seemingly random) symmetrical rash. Eventually I figured out that this rash was due to a gluten intolerance, which has gotten worse over the years. Now the smallest amount of gluten brings on a rash on my sides, the back of my neck, the backs of my arms, and now the inside of my elbow. Since being diagnosed with stupud Behcet's disease, I've figured out that once my body reaches maximum capacity for gluten intake, I start to present my Behcet's symptoms, generally in a very specific order. First I'll become unbelievably fatigued (we're talking ten hours of sleep followed by a nap), then I develop folliculitis in the form of painful nodules on my head, then a fever, and occasionally vomiting. There are also migraines sprinkled throughout this whole process. All of the women on my mother's side of the family have a gluten intolerance as well, but none of them have Behcet's.. Guess I just got lucky

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

Behcet's disease wound in the mouth, sores in the genital area, with pseudofoliculitis and Erythema nodosum symptoms I've had severe symptoms of a disease. Remission in Behcet's not impossible.

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.

15 years with Behcets...now they think it is herpes???

I was diagnosed 1999 with Behcets. I have oral and genital ulcers, joint pain, headaches, fatigue, IBS, and sores on my skin. It was horrible at first but slowly got better with outbreaks evey so often. Then I went 2 years without medication. Then back on medication because I was having outbreaks again. Then 2 years without outbreaks but still on medication. Now, 5 months of on and off hell and so I went back to Rheum. and of course my sores are gone ,and they say...'I don't think this is Behcets. Maybe herpes' Then sent me on my way and told me to touch base with my primary care doctor.
He said I should get a biopsy done during my next outbreak and take pictures of sores so they can see them.
Sigh...I went through all of this in 1999. I was on really high doses of acyclovir and seeing an infectious disease doctor. She was the one who finally sent me to Rheum. with the mention of Behcets. I had the biopsy, the DNA test, the blood tests, etc.
I am so depressed. After all this time? All these medications? Basically revolving my life around my illness and now you think I have herpes??? And if I have herpes ALSO, why are the symptoms exactly the same as all the other times before? Why not take a blood test? Why not do something other than send me away bawling my eyes out?
I read online to search for clues. One site said that ulcers will go away completely over time with Behcets. Is this true?
I am a Caucasian female so my doctor also pointed out how rare it is for me to have Behcets.
I just don't understand after all this time and seeing so many different doctors...could they all have been wrong? Or were they just depending on the previous doctors diagnoses?
So sorry for the rambling. It is still heavy on my mind from my appt this morning and although my family is supportive, they don't understand...
Any insight would be helpful.
Thanks
Lisa

I am so sorry for the problems you are having with your diagnosis. The problem with Behcets (as you know) is that there is no definitive test for it, so it is left to exclusionary opinion of doctors that may have spent little time studying or understanding this disease process. I have suffered for 40 years and it took a doctor who flew to a local clinic from Israel to finally diagnose me. He has extensive training and experience with this disease. Once I read more about this disease it was like a lightbulb went on and what has been happening to my health over the past 40 years finally made sense. One rheumatologist said he didnt know what was wrong with me, but when I died they would finally test and find the answer
and then my family would finally know what was wrong with me. I dont care if I am female
and living in Canada and not from Mediterranean descent. I finally have a diagnosis that
explains my forty years of suffering and I thank God for the knowledge and visit from a doctor
who has seen and treated this disease back home....and for answers that have taken 40 years
to get.
Your symptoms are just like mine.
It is 6 a.m. in the morning and I havent slept all night because I am experiencing a very painful
flare up and cant sleep due to the extreme pain.
One day, because of those having suffered with this and other auto immune diseases, doctors will understand more....throw away the stereotypes....and researchers will develop tests that will end years of suffering with a quick diagnosis and effective management of this disease.
If I was dealing with this situation I would find another doctor that either understands this
disease or is willing to learn and work with you to try and provide the best quality of life
possible.
Do not give up hope. You will have to educate those that dont know and learn from those that do. All your perseverence and hard work will pave the way for others to get the proper help
and prevent them from experiencing what you and I and others have gone through.
Remember, doctors once thought bloodletting cured serious illness. Look how far we've
come...and we have so much further to go. It is because of sharp minds and those that have gone before that we've come this far.

I was diagnosed with Herpes for over 10 years and took Acyclovir like yourself for years with no positive effect.. This was not Herpes although Bechets has some similar symptoms. Getting correctly diagnosed is almost by chance and I always knew myself that there was something quite seriously wrong. My main issue is with pain in the Pelvic area and ulcers. I am on Imuran and Plaquenil which is starting to get this under control. I believe that it is also connected with Urological and depression issues that I have.

Thank you so much for your support. It means a lot to not be alone.

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?