Hi guys, at last I had my first visit to my rheumatologist after years of Gps and dermatologists not talking my symptoms seriously... I have not yet been fully diagnosed just need to test my blood to rule out all the other possibilities but she was more than convinced it is Bechets. I think the one thing that she took on board was my picture diary mor so the oral ulcers!!! I will be starting on the colchicine asap hopefully it will get things in control a tad.
So for anyone looking for advice on getting a diagnosis I would definitely recommend a picture diary using your phone it seemed to have a big impact things.
I forgot to ask her about a medicated mouthwash, is there one ?
Kind regards👍
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Hampo81
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The picture diary idea a great one - wish I had thought of it! Regarding mouth ulcers just be careful of any mouth washes, topical ointments etc that contain ant-inflammatory. They will make it worse. I take 150mg of Azathioprine daily - miracle drug. Hardly any mouth ulcers but I have to watch foods etc with anti-inflammatory properties such as pineapple. Good luck. Keep us posted how you get on.
Paracetomol ok as it is a pain killer but anti-inflammatories are exactly that. They reduce inflammation. Behcets is an autoimmune disease, so your immune system attacks healthy tissue. I am not sure why I react to anti-inflammatories this way, but just from experience and what I have googled/read, and especially after one incident, it was enough to convince me that I had a reaction to them. Once I cut it out - I had no genital ulcer problems. I think now I am on Azathioprine I may not get a reaction - but I am not willing to find out! Unfortunately the advice/knowledge about behcets varies greatly. I have been very lucky, but just to try and help and put word out there, I often reply to people with certain symptoms and tell them my experience. Hope that explains. I don't want to come across as a know it all, but getting a diagnosis took years and I have felt very isolated with it all. Not able to talk about it because lets face it - the symptoms aren't something you can discuss in the pub! Hope that answers your question.
Ah, OK, so you mean non-steroidal anti inflammatory drugs such as ibuprofen? I got a bit muddled up as you then went on to mention pineapple.
Personally I find ibuprofen tablets and gels very helpful when used occasionally, as I have a lot of joint problems. I don't get many ulcers.
Behçet's affects us all in different ways, and it is quite a journey discovering what works for each of us as an individual, isn't it?
It took a long time for me to be diagnosed too - 50 years! - mainly because I was told as a child not to complain about ulcers as 'we all get them' so I never mentioned them to anyone again. As a teenager the family doctor said my genital ulcers were the result of too much sexual activity, and as a lively lass, I couldn't really argue with that 😀
My reaction may not be behcets related but I had no genital ulcers after I stopped taking it. I was only confirmed behcets after I got retinal vein occlusion in right eye. Just don't want anyone else to have to get to something like that before diagnosed. Had I been diagnosed I would have been on meds and sight would be ok. But it no-ones fault, just how it is. Been there with the local sexual health clinic! As much as I kept saying that I had been happily married for 20 odd years - always got the " heard that one before" look!! And hubby and I had to have the talk - but neither had any worries on that score as we knew anyway. But I had to ask! Love the lively lass remark!! Keep your sense of humour!
Hi there. Congrats on getting closer to your diagnosis. Colchicine helps many of us, so good luck with that.
The oral health consultant at the Birmingham Centre of Excellence recommended Difflam to me. You can buy it over the counter, and it does help a lot with pain when the ulcers are present. When my mouth is ulcer free I use Original Listerine. It has thymol in it, which is very effective against streptococcus, which some studies suggest is implicated in Behçet's. She also recommended using toothpaste without SLS in it. SLS is a powerful detergent used as a foaming agent, and it is in most toothpastes. I now use a herbal toothpaste called Sarakan which is SLS free. It has a bit of an unusual taste, but not unpleasant, and I have had far fewer ulcers since I switched to the Listerine / Sarakan combo. Some kiddies' toothpastes are SLS free too.
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