Symptoms of bechets

Hi ,

I have recently been diagnosed with possible bechets and would just like to know about people's symptoms , I get flare up with my eyes almost every 6 weeks watery painful and bloodshot been put on steroid drops /hylo tears and Colchine as every time my eyes flare I seem to get a mouth ulcer, my hair comes out a lot and is getting very thin I feel a bit down in the dumps quite often and have gained about two stone in a year 😩 I also keep getting painful pressure in my head . ( they only way to describe it is as if I took a drill to it to to relive the pressure it would help ) I now and again have also had pains in my tummy and not felt right, is this the same as anyone one else ? I feel fed up as I'm constantly at the docs or hospital but no one seems to really know 100% what's wrong with me ?

can anyone else relate to my symptoms?

3 Replies

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  • Hi I've had behcets for a few years. I know exactly how you feel Dr all the time. I got blindness in one eye,have trouble with my stomach daily, the steroids make you gain weight,you can get spray of Dr for your ulcers,your hair will thin but this will only be short term

  • I've suffered from BD for 18 years now. Mines started out with mouth ulcers then it progressed with the help of oral steroids to my joints and muscles and bones. The steriod side effects can make your pain ten times worse. It's hard having something that no one has heard of BASICALLY. Once you get a diagnosis you get a feeling of relief to at least know what is going on with your body. I just gave birth to my beautiful daughter YES she was and is healthy. My BD was in remission during my pregnancy. The mouth ulcers were no longer there but the physical pain in my joints were. I pray NOTHING is wrong with you at all. I wouldn't wish this illness we battle on my worse enemy.

  • Hi. Yes, most of that is familiar to me!

    How long have you been on colchicine? Tummyache is a common side effect of this drug. Do you know colchicine can take a long time to take full effect? I was on it for 6 months before it fully kicked in! But now my ulcers are fewer, I get less joint pain and my flares and headaches are generally less intense. I have been on it for 18 months.

    So in my case, colchicine works well, but it does make my tummy very sore at times. My flares always affected my intestines before, so I am sensitive in that area. I find if I avoid gluten, dairy and nightshade family (tomatoes, potatoes, sweet peppers, chilli peppers and aubergines) it helps a lot.

    My hair loss was due to me getting scalp sores. I was still getting them even on colchicine, but since I stopped using regular shampoos and conditioners this has improved a lot. I now use soapnut shampoo bars from soapnut.co.uk. It is very gentle indeed - gentler even than baby shampoo or 'organic' products. I still get tender bumps on my scalp but they don't break into scabby sores now, and the soapnut shampoo makes my hair bouncy and shiny, and pretty soft too, so no need for a conditioner.

    I thoroughly sympathise with your frustration at not being fully diagnosed. I have been ill all my life on and off with Behçet's symptoms but was only diagnosed 2 years ago, at age 55! But it sounds like you are on the way to finding out what's wrong, and you are getting some treatment for your symptoms in the meantime.

    Weight control is such a minefield when you are feeling sick and tired a lot of the time. I have had some success with Paul McKenna hypnosis apps - there is one called Hypnotic Gastric Band, and another called I Can Make You Thin. I just play one or the other now and then when I am going off to sleep and I do seem more able to control my appetite. I comfort eat when I am feeling low, and the hypnosis helps me curb that.

    I hope things improve for you soon.

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