Behcets Syndrome

Der Daspers

Hi everyone.

I have recently been diagnosed with Behcets Syndrome. This is a very rare condition and I am just wondering is there anyone here who has been diagnosed with this syndrome.

Thanks.

Oryx

Moved to Long Term Illness

April1

Hello, I have been diagnosed recently.

Der Daspers

Hi, its great to finally meet someone else who has been diagnosed with Behcets Syndrome in Ireland. I am a 28yr old female and I`m completely Irish, I believe I have no connection to the Middle East or Far east as I have the typical Irish pale skin, blue eyes and brown hair, however I do carry the HBLA51 gene which is believed to be a risk factor in developing the disease. Interestingly my rheumatologist believes there is under 100 people with this disease in Ireland.
I finally got a diagnosis by my ophthalmologist in January of this year following inflammation of the optic nerves which blurred my vision. Firstly I was tested for TB, lymes disease, sarcoidosis, toxoplasmosis which involved an MRI brain scan, CT scan, x-ray and blood tests. All tests came back negative for any of them so I was asked do I have any other symptom's of interest so I informed the ophthalmologist I get recurring mouth ulcers for the past six years which surprising had disappeared since I was put on a high dose of steroids when I initially seen the ophthalmologist previous to all tests in October. Earlier this year following an eye operation my treatment has been an immunosuppressant called tacrolimus and prednisone which I found tacrolimus to be very toxic as I Had constant pains in my kidney area, dehydration, insomnia, anxiety, shaking of the hands and restless legs. However I now think things are looking up as my rheumatologist has now changed my treatment to Enbrel a pre-filled pen injection, Imuran and tapering down on steroids.
Enbrel is a relatively new treatment for behcets and seems to works by blocking proteins that cause inflammation in the blood. I am only on it 2 weeks on the injection but the day before I took it I was having a flare up, my vision my blurred with tender nodules under my eyes, I had swelling of the left foot and mouth ulcers. Surprisingly all symthoms disappeared the day after the injection. Thank you for reading my story and would hope to hear from anybody else's experience and treatments as their is not enough known about this disease like so many other diseases.

livemusic4life

I too was diagnosed with Bechet's, and am completely Irish, had problems with my eyes and eye specialist said he was sick of people being diagnosed with Bechet's who clearly haven't got it. Its left me in limbo as other medical professionals don't believe it either and think its a one size fits all cap.

Der Daspers

Thanks very much for your reply.
I believe that some Health Professionals do not know enough about the disease and may be ignorant to it. Older Health Professionals may only deem it as a disease from the Middle East because that is what they were taught. Its only now that this disease is becoming better known in Ireland with more education and internet etc. I believe that there are probably a few hundred people in Ireland that haven't been diagnosed or misdiagnosed as it may take years for all the symptom's to appear which is what happened to me. I also think that many people may have died by this disease without knowing as the slow progression of the disease can lead to serious consequences if untreated. I think you are the only person that will know if you definitely have the disease and its symptom's. I find my ophthalmologist essential for treating the eye involvement but my rheumatologist has the proper knowledge and treatment for the disease.

LegacyUser

My daughter is in hospital with this condition and I know she would like to hear from other sufferers. She has been ill for years but it was not until she was full of ulcers that it all came together. The hospital has never encountered this disease before.

rich&carrie

New facebook page for Behcets disease. Behcets disease Ireland

Mia75

Der Daspers wrote: »

Hi everyone.

I have recently been diagnosed with Behcets Syndrome. This is a very rare condition and I am just wondering is there anyone here who has been diagnosed with this syndrome.

Thanks.

Hi
Recently diagnosed too