Behçet’s Syndrome Community

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New medication

Hello

After some turbulent months after my first diagnosis with Behcet's syndrome, they found that the Azathioprine and Colchicine did not work on me, I even had Depo Medrol injections every 3 weeks but still no relief from the symptoms. So they consulted a specialist in Behcet's syndrome and decided to start Adalumimab injections 40mg. Today I had my 3rd injection and now I have to inject every 2 weeks for myself. Does anyone have experience with this medication? For myself I do notice the difference a little bit, but that was also with the other medications at first.

Ty in advance, Silvia

Potential Diagnosis and Uveitis Question

Hi Everyone,

I'm not yet diagnosed, but it looks like we're heading there. This is my fourth time with vaginal and genital ulcers. The first time it was only vaginal and I didn't receive steroids for it. This time and the last two, I've been on Prednisone, Dental Paste, and Clobetasol. I was also on Colchicine the first time.

They were afraid to diagnose with the absence of uveitis. I seemed to have my first uveitis onset the other day and it lasted 24 hours. Very scary pain, blur, and wateriness. Is there anyone out there who didn't have uveitis until later? If so, does it worsen?

robpleticha
moderator

Results of Phase II clinical trial for treatment of oral ulcers

The New England Journal of Medicine just published this review from a phase II clinical trial for the drug Apremilast to treat oral ulcers associated with Behcet's disease

http://www.nejm.org/doi/full/10.1056/NEJMo...

Read more about the completed trial for the oral ulcer treatment here: https://clinicaltrials.gov/show/NCT00866359

behcet_spain
moderator

Thanks Rob for the information ¡¡¡¡

This is Celgene's press release:

http://ir.celgene.com/releasedetail.cfm?Re...

May be some more european patients included in phase III? We don't know, but we'll try ¡¡¡¡

Warm regards.

Gon.

Bechets and UTI's

Hello everyone,

I'm new to this and have read most of your stories which have helped tremendously. I'm been suffering from bechet symptoms for over a year and waiting on my first appointment at the London centre for hopefully a diagnosis and treatment.

One symptom I have experienced though which no one can tell me if they are linked or not is recurrent water infections. I've had all urology tests but 'nothing abnormal' to see. Does anyone else diagnosed had any link??

For ages I've had to deal with people calling me a hyperchondriac and after reading all your stories every symptom I've been telling people about is finally fitting into something. So thank you!!

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.

Tjbd; Interferon worked well for me and is healthier than most other meds, though it doesn't work for everyone. Systemic control means not treating oral apthae w something topical when your immune cells are over active and will probably attack your skin, GI or nervous system if there is not systemic control through pills or injection, rather than just using a mouthwash, for example.

I did not follow up w Zinc carnosine bc I had pancreatitis following a steroid injection in my shoulder and was concerned this contributed, though it is unlikely. I work out alot and the Behcets finally got to my joints. Apparently steroids can cause pancreatitis sometimes combined w Valerian, an herbal med.

Remission refers to a quiet period, whether through medication or without meds. This disease always has remissions. Trick is figuring out why and when!

Jane58-
Thankfully, I do not get every bug going around.

Cliff-
I did mention Interferon to my rehum and he said insurace wouldnt cover it. I do want to stick to the autoimmune antiflammatory diet and work on my food journal before I fight the batter to try Interferon and get the Dr to use the right diagnosis code to cover it. I have read so much about autoimmune disorders and diet.."leaky gut'..and so on....i can see how changin gmy diet may help. When I first had an outbreak I had been on a 'health kick' and was eating tons of strawberries, blueberries and nuts.

I know everyone is different, and sorry to go off topic, but how long do your mouth ulcers normally last when you have an outbreak? Mine seem to spread, hard to explain but the sores get larger then the tissue next to the sore starts getting an ulcer. I keep my mouth as clean as possible although brushing tongue is a no go when its covered in ulcers. I also rinse w/ diluted Peroxide. Have tied Peroxidyl, baking soda, have 'Magic Mouthwash' (very temprorary pain relief for me). Wondering if I am doing something wrong or if three weeks is normal to have these #$@#% ulcers.
thanks!
T

Hi Jane 58; Health vocational high school, I work as a teacher Emergency Medical Services. I think you teach biology, despite being close to the profession, we provide information for treatment. Behcet 1985-1988 year in Behcet's disease is very severe wound in the mouth, sores in the genital area, pseudofoliculitis and I had symptoms of a disease characterized by severe symptoms of erythema nodosum. Behcet was twenty-seven years of remission.

bladder and bowel involvement

Hi does anyone else pee or poo blood with behcets? The blood in my pee is microscopic but its been consistent. Had 2 cystoscopies I didnt watch the first one as I had a rather large genital ulcer and was in a heap of pain but the outcome was lots of enlarged blood vessels in my bladder. The second one I had done 2 weeks ago I actually watched it and you could see there was several clumps of enlarged blood vessels. I'm going back to the urologist at the end of the month to see what he says but just wondered if anyone else had this. My colonoscopy showed what they thought was internal haemmoroids but am wondering if thats due to this too?

Tomato, lemon, citrus fruits and vegetables such as eggplant may increase after this will cause irritation in the mouth. In themselves, identify patients who have sensitivity to these foods, these foods should not try to take one as well as with other foods.

I used to get a painful lower back/hip regularly. All gone since I found my food triggers - see food sensitivity posts.

I have to confess I got so frustrated with doctors not doing 'joined up' thinking that I just decided to try to sort it out myself. I really would recommend trying to see if there are food triggers. If it's something you're eating regularly the symptoms might not be obviously connected to intake. Also a lot of the symptoms don't appear for 2 days - [possibly connected with the digesting food arriving in a particular part of the intestine.

colchicine taken as support for the brand does not matter b12 deficiency bemiks use at least a month to add to treatment using a month. vein thrombophlebitis, which should receive routine involvement tomboz bemiks already be complex to acquired thrombophilia due to a lack of folic acid and b12 b6 prevents get the bemiks.

distressed

Hi, I'm a 38 year old mother of 2. I've been struggling with Behcets for almost a decade now with increasing symptoms. Lately, I've been feeling increasingly sad and hopeless. I have extreme fatigue, joint pain, and general malaise in addition to the oral lesions and eye pain during flares. It seems like my symptoms are becoming more systemic over time which worries me. Some days I cant hardly get out of bed cuz I just feel really unwell. I've also struggled with some severe anemia. I guess im wondering how others in this situation cope emotionally. I have a ten and seven year old and I want to be a good and active mom to them. I can feel distress (depression? ) creeping in and I'm finding it increasingly hard to stay positive and enjoy my life. The relentlessness of this disease is wearing me down in every way. If anyone has some advice for me, I'd really appreciate it. Thanks.

Chelsie, I sincerely hope you are feeling better now. I think most of us experience theses ups and downs and it can be depressing. Most days I can be positive but sometimes it so emotionally draining and I find myself teary-eyed and depressed, where I feel like I don't even know why I'm crying at that moment and I can't seem to pull it together. It makes me feel foolish but I guess we're just human and this is frustrating. Helps to hear everyone's else stories. While family is great, they don't understand the same way as others with the disease. Glad to find this forum. Not sure what meds or diet you are on but I'm finding a plant-based, anti-inflammatory diet is helping with many of my joint and inflammation issues.

Thanks everyone for the responses! I wish I could say that I'm doing better but its been pretty grim. I had some Solu medrol infusions to help with the extreme flare up and it helped but my symptoms are coming back. I'm so fatigued I can't function most days. My marriage has been suffering and we're talking about a separation but I dont have any idea how I will survive. I have 2 school aged kids and I feel like a failure as a mom at the moment. My son, 10 yrs old, was born with a cleft lip and palate and has had a lot of medical intervention himself. He's had 14 surgeries so far and a lot of therapies and related problems. I've always been able to care for him until this last year and now I'm wondering what will happen if I continue to decline.
It just all seems so bleak! Right now I take dapsone and imuran daily and treat the skin lesions with fluocinonide cream. If anyone has anything to offer about these meds id love to hear it. Thanks!

Hi Chelsie, I understand how you feel because it all got too much for me when I was about 40 with kids the same age as yours. On top of everything else I had a sick migraine for 3 days every 2 weeks, linked to my cycle. Doctors were really not helpful in my case. Started constitutional acupuncture which relieved many symptoms but only for about a week. Then had an IgG blood test (YorkTest) which tests for IgGs to foods. The research is slowly coming in to support this but the medical profession are very skeptical. However although they all 'know' it is inconclusive no one can show me a scientific paper to support that view, so I wonder how much of that is urban myth.

I encourage you to read the food sensitivities thread. Those of us who have posted have found different triggers so you would need to experiment.