Hi my name is Lesley, I'm very pleased to have found your group.
After over 10 years of being told there is nothing wrong with me I was finally diagnosed at RPA in Sydney Australia 2 years ago.
Have tried Infliximab, Colchicine, Cyclosporine.and Thalidomide. I'm not tolerating the Thalidomide very well (3 - 4 capsules a week) and probably will go on to something else in the next couple of months. I've been on Prednisone as high as 60mgs and am back down to 10mg, although I think it might have to be increased soon. One of the specialists told me that intolerance of drugs was part of the disease (which I had suspected).
I seem to have some very unusual lesions, even for Behcets sufferers - granulomas that very slowly work their way to the surface - takes months to heal. My other main symptoms are generalised muscle weakness and pain. I seem to have been in a very long flare (almost since diagnosis). I mentioned this to the specialist and he just nodded and said I had 'spiralled') - I was starting to wonder if it was psychological.
Just out of interest sake I am a 55 year old female from an Anglosaxon background.
Lesley
PS Photo was taken 15 years ago - pre prednisone
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lesleyg
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Hi Lesleyg Behçet disease first go to this day about the disease related articles and articles. Get the target, indicating that the disease is insidious looking operation to create an even more mysterious disease and My yangilar disease teshisim Dermatology doctor front was also diagnosed with a definitive diagnosis and treatment of the Faculty hospital in Istanbul. Oral Aphthae, psödofolikülit, Erythema Nodosum, genital sore. findings I haven't used the drug since 1988 to the present. Beyond the control of meds should be offered. Mouth hygiene, Beslenmene attention to factors, Stress will open a new page in the remote kalmalisin lives. I Health/Emergency Medical Service at over the task.
Healthy living with you to discuss, regardless of the remote.
So at the moment you aren't taking in drugs? Just using natural medicines and avoiding trigger factors? I agree with you regarding the mouth - not taking anything that irritates it. The worst thing I did was accidently eat some Chilli (didn't know it was in a dish at a restaurant). I was on a cruise and went to Guatamala which was active volcanos (a lot of ash and sulphur in the air) - the combination gave me the worst attack of ulcers in the mouth and throat yet.
Photo new; disease began in 1986. diagnosed in 1987, a definitive diagnosis. Oral aphthae, genital ulcers, pseudofoliculitis, there were signs of erythema nodosum.
It was your comment about your pre-steroid photograph that tugged at my heart. My photograph is pre-steroids too. It seems so unfair that we get this wretched disease and then have to take meds that make you feel ugly on top of it all!
I have been weaning myself off the steroids after taking them for well over a year. I have developed sever cushings disease from them. So, I managed to get myself down to 2mg a day, reducing at 1mg per month - then today my new consultant tells me that to get everything back under control I need to increase the dosage to 5mg a day. I know in the scheme of things 5mg a day is nothing - especially considering I have been on as high as 50mg - but it is very soul destroying after all that hard work. The thing is, they seem to be the only medication to help the joint pain. That and methotrexate that I take once a week - 60mg, which he's just increased to 80mg
I actually queried my diagnosis with him today - I thought Behcet's was a disease of flares but for the past 6 months I seem to have one continuous flare. He just shrugged and didn't really give me an answer - but your 'spiralling' thing sounds interesting.
Sorry - I've waffled and vomited my despair all over your board! Forgive me - and you can do the same if and when needed.
How's things? I know you haven't been well. My fatigue has come back however I think it was too soon. Also virtually no nausea, but this could change with the dose I guess.
I'm finding a lot of support here that I couldn't get in Australia (mainly because so far not too many people have been diagnosed with it).
I managed to get down to 10mgs prednisone but have gone back to 15 over the past few weeks. I was on as high as 60mgs - they couldn't believe that I could be inflammed on that dose.
I feel that i have basically been in a two year flare (I've heard of others being in long flares). I'm not complaining because I'm very grateful for being diagnosed and treated, however one doctor suggested they may have changed things from the large flares (about 4 a year) to milder almost non-stop.
On Tuesday I have to go back to the hospital and may go on Methotrexate - how do you find it?
Yes it's not fair. I've always struggled with my weight and now have added another 4 kgs.
It's Friday third day after dose (and third week). Hardly any nausea. Yesterday couldn't believe how well I felt, today not as well but still pretty good compared to usual.
I'm new to this site and still on the treadmill seeking a diagnosis. Seems I tick all the boxes: painful mouth and genital ulcers active 3 months now; 3 years ago a rheumatic flare, now general severe and migrating joint pain with swelling; recent flu put me in hospital with suspected clot in lungs due to chest pain, shortness of breath and a positive D-Dimer blood test. CT showed nothing wrong!
The list goes on with nausea, burning pain in upper abdomen, etc. I have also tested positive to cardiolipin antibodies and the doctor who saw me in hospital 2 days ago said I need to be on warfarin for the rest of my life (2 positive incidences of thrombosis 10 years apart, the last one 30 years ago). He tried to scare the daylight out of me.
Neither he nor any of the many specialists I've seen in the past 5 years has offered a diagnosis.
I'm in Australia and desperate to find someone who can pull all this together. Still working full time but the fatigue, daily intense throbbing headaches on top of everything else nearly has me beaten. You mentioned RPA. Do you have a name I can follow up?
Sorry such a long rant. Life has been a downhill roller coaster for too long!
My son & daughter are in the process of being diagnosed with Bechets & we live in Sydney. Whereabouts are you two? Both my children are attending Concord Immunology Dep & the people the (some of them) are open to the idea of The Bechets. I've also been doing some research (this is how I discovered your group (-: ) anyway have any of you heard of Interferon Lozenges? I read a very long blog by a Bechets sufferer & she has had incredibly great results with these. If anyone wants the info contact me & ill look for her blog etc. Meanwhile the questions continue. Does anyone know how many people in Australia have Bechets Disease? Look forward to reading the posts everyone has & learning more about your experiences.
I’m a 55 y.o. Anglo male (but only claim Scots/Irish 😇) First symptoms appeared 16 mos ago, pain (from lesions) deep in my throat sent me to an ENT (ear, nose and throat in the States). He sent me to an Infectious Disease specialist attached to a teaching hospital as is my Rheumatologist . She, the ID doc identified my disease before my wife finished telling the symptoms and progression (I could barely talk) having seen it once in seventeen years of medicine and requested my Rheum doc see me “yesterday”. I’m still having sometimes debilitating symptoms but at least we know what we’re fighting. I can’t imagine having our symptoms and no one knows what it is or they tell you it’s psychosomatic!
You mentioned spiraling and a long flare. I’ve missed six months of work in three two month episodes and probably went back to work too soon. From the first onset of symptoms I’ve had two days with no pain from mouth lesions. Four or more months ago the first lesion on my (genital lesions. Don’t want to be crass nor offend anyone but also understand that specifics might help someone else. Do I just use common language so everyone easily understands? Suggestions?) I now wear a panty liner due to weeping and bleeding lesions.
Fatigue is a near constant. My wife tells me I recently began to whimper in my sleep when I move due to a work/Behçet’s injury. In the normal duties of my job, actually the lighter of those duties, I was lifting, reaching and stretching. My back is now spasming horribly. Does your body way over react to excersion?
This happened on 4 July when I walked my second 5 mile jaunt of the day. I had been building up strength as I recovered from my last flare and decided to push myself because I felt good. Those muscles in your low back that generally respond well to walking decided that I went too far, pun intended, and responded as if I had lifted a heavy object in the wrong manner. Both times the pain made me sick to my stomach. Both times I missed work (glad my foremen {I was in a different part of the plant this time from the last} were compassionate and the opportunity was there for me to take a day without pay). I hate this disease but in the midst of it I’m thankful I have really great private insurance, physicians that put their personal pride in caring for me above their ego. Each are most confident in admitting their lack of knowledge regarding Behçet’s. My Rheumatologist’s nurse reminds me that she prays for me, by name, daily during the work week. She’ll tell anyone that she prays not because she believes in the power of pray or good thoughts, though there is something to that but because she believes in the power and love of YHWH who spoke cosmos into existence. (That's a confidence builder for someone with a disease process like ours) Show me the one person who knows the most about this disease and the treatment thereof and she or he will tell me we know little compared to what we need to know to treat if effectively or even know the breadth of the symptoms.
Well I’ve run on. Been in bed all day and the pain med I finally took is working so I’m chatty.
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Terrible Flare
Diagnosed with bechets 3 years ago still suffering symptoms even though I'm on treatment.is anyone else the same?
Is emotional coldness and heartlessness a common symptom??
