New to Bechet's

Hi Everyone,

This is the first time I have been on this site, I suffered with a few symptomes related to BS a few weeks before Christmas, I had Ulcers both down below and in my throat & had a flu type fever at the same time. I have had 3 swolen joints over the last 8 months or so but still very fit & active and playing competetive sport.

I have seen a rheumatologist who is the closest qualified person to know anything about the syndrome in any depth.

I had the ulcers in my throat one more time since & have had random swollen glands in my neck a few weeks ago. The doctors are sure I have BS, can they realy be so sure so early on.

If I have it then at the moment I am very lucky so far to not have suffered like other people have I have reasd about.

The rheumatlogist wants to put me on Sulfasalazine & I am happy carrying on as normal for now but she insists it's a good idea.

Any comments or advise would be very much appreciated...Thanks Ads.

7 Replies

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  • Hi Adam, you certainly have some of the symptoms of Behcets but it does seem early to have a definite diagnosis. Part of the problem is that we can all tell a different story of our journey with thiis disease. The diagnosis is very important with regards to the best medication for your symptoms. I will tell you a little of my story to give you some idea. It all started over 26 yrs ago with mouth, nose and throat ulcers then skin lesions and later genital ulcers. No treatment would stop these symptoms including steroids upto 120mg daily and a list of other meds as long as my arm to no avail. Also being ushered from doctor to doctor and several hospital stays. You must remember that back then very little was known about this condition.after 12 yrs I eventually got my diagnosis and within a couple of years the right treatment for me. During all this time I have managed to have 2 more children, remarry and go back to teaching. Also 7 good years of remission whilst on Colchicine meds and 3 more after stopping it and without any meds. Sadly just now the disease is beginning to reappear and I go to see my consultant next month. My point is though it isn't all doom and gloom, as in all life we all suffer differently and all respond differently.

    A couple of tips that have helped me to get through flares without heavy meds......for some reason when I can't even take water I find coca cola very soothing and it keeps me hydrated. Also using a straw, blending food and using a baby spoon ( this at home of course..lol). Most importantly, especially at the start of an outbreak...Clenil steroid inhaler, spray and cream. The cream is good for skin lesions, the spray for the nose and inhalers for mouth and genitals. If you attack the little devils aggressively at onset with say, 3 puffs each areas about 4 times a day you can keep a bad flare up at bay or even stop it.

    I hope all this info helps and please, please make sure you get the correct diagnosis.

    Good luck

    Hugs billi

    Ps feel free to contact me if you need more help or info.

  • Hi Billi,

    Thanks for your reply it's much appreciated you spent the time to share your story, the information I have got from this forum has been very helpful to me, hope your consultation goes well, all the best x

  • Hi adam

    Welcome to the forum. I hope you find it as useful as I do and we are a friendly bunch.

    It is very fortunate that your rheumatologist has experience in Behcets as it is very rare and still people find it difficult to get formally diagnosed.

    I would sumise that lots of tests were done to exclude other conditions which manifest like behcets, before the diagnosis was given?

    There is lots of info on the Behcets Society website and some fact sheets which may help you if you haven't already seen them the link is

    behcets.org.uk/menus/main.a...

    I have had the symptoms possibly all of my life but mostly for the last 25 years or so. I wasn't diagnosed until 12 years ago and had been miss-diagnosed with many other conditions before that. I didn't really have any treatment until 5-6 years ago when I was diagnosed with Neurobehcets and very ill indeed. I feel I wouldn't be suffering half as bad now if I'd had medication sooner.

    It seems your Specialist is advising an immune suppressant but as billi say there are other medications that can help. The link I gave you above gives advice on specific medications.

    I am not saying that your condition will get worse without immune supression but it is something worth considering and disgussing with your Specialist as behcets can be quite unpredictable.

    Hope you find this useful

    Andrea

  • Hi Andrea,

    Thanks for your reply, the advise is much appreciated as all this is new to me & I find more information on here than any of the Doc's can give me. I had the few symptoms I listed and a number of blood tests were done at the time of the flare up and they came to the conclusion I had Behcets, the only on going symptoms I have been getting lately are swolen glands in my neck but they go fairly quickly and thankfuly don't realy bother me much. So I guess I'll see how I go! Thanks again

  • Hi Adam,

    Your symptoms sound pretty much the same as mine. I had some bad mouth/throat ulcers in the fall as well as some 'down below'... which is what led to my diagnosis. I have had mouth ulcers for about six years now, and I've had bouts of body aches in the last few months, but have not suffered to the degree that many on here have, and I am thankful for that.

    My Rheumy right away put me on Colchicine but I didn't find it helped very much and just upset my stomach. As I'm not a huge fan of taking meds if I can help it, I went off it and changed my diet instead. Through an anti-inflammatory diet and the use of a mouth paste called Oracort (which can be used directly on the sores) I have been able to manage my BD very well.

    It's awesome that you're still playing sports. I think keeping fit and doing the things you enjoy is a huge help in staying healthy and positive.

    You just have to monitor your own health and do what works for YOU. Which you will figure out as you go.

    Take care :)

    Kat

  • Hi Kat,

    Many thanks for taking the time to reply to my question your possitive outlook can give hope to many I'm sure, it's great to hear you don't suffer too much & that it's perhaps not all doom & gloom. I am in the mindset that I want to carry on with out meds as at the moment I am not suffering like some unfortunaltly are, so that's my plan! Take care too

  • Welcome Adam

    I think you will find this site very friendly and informative. Everyone on here has varying degrees of BD. I still work and although I used to be a fitness fanatic I can no longer participate because of my aches and pains.

    Once again welcome

    Hugs

    Angela

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