Behcet's Syndrome Society
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After 16 years I've made it onto the treatment ladder

Hi all, yesterday I paid a visit to my local hospital in Ayr and met a senior rheumatologist who spent some 50 minutes talking everything through...something I've grown tired of doing but this time I think it was worth it.

I'm to start a course of sulfasalazine and I'll be changing my Celebrex to a more recent COX-2 inhibitor.

I was offered hydrotherapy but said that I felt that it would not be much use... much like taking a car with a broken engine to a car wash... It may come out nice and clean but it still has a broken engine.....

Before I was I'll I was a long distance cyclist in addition to being in a physically active job and I've never been afraid of exercise even when pain or fatigue is a factor.

If anything I tend to do too much when I shouldn't.

As I've already tried physiotherapy - hitting my glass ceiling fairly rapidly - faced with a Physio who knew little about Behçet's - I'm not going through that again either.

The rheumatologist did mention the regional centres for a later date should the treatments I'm about to try - fail.

It's taken 16 years to get this far....

Whilst there, I also spoke in defence of the "invisible" Behçet's patients - those in the majority who do not necessarily display easily examinable visible signs.

A paper I read some time ago stated that again in men, recurrent epididymitis was an indicator over severity regardless of other absent signs.

The doctor knew what I was getting at.

Have to say that I now have an excellent doctor for the first time in several years.

Just wanted to share this with you all here.

Until later,


7 Replies

That's brilliant Stephen....just shows what perseverance can do even though you shouldn't have to finght so hard to be heard.

Hope you can now turn your focuses to your condition and hopefully give your treatment time to work for you.

Good Luck


Fantastic news Stephen. All your fighting to be heard has finally been worth it. If only the first doctor you had seen had listened to you and taken the same approach as the one you saw yesterday. Good luck with your treatment. Clare x x


really pleased for you stephen ,its about time someone took you serioulsy ,it was easier for me as my father also has behcets but i understand your frustration ,good luck with your treatment


That's great news Stephen, I hope the treatments work for you, I am also under a fantastic consultant at Ayr Hospital, he has been absolutely brilliant and I have been doing ok, I was about to give up until I was finally referred to him, I'll keep my fingers crossed for you, Jackie


hello stephen yes it is wonderful to finally find that DR who stop's and looks at as a hole and not just this bit that bit like a lot do . but may i ask what treatment and drugs you were on be for you found this amazing new DR .......if you do not wont to talk about it that is fine to ........good luck with ever new wonderful day of your new life .xoxox


Hi there, just wanted to say thank you to everyone who has replied to this message :-)

I presently have 10 items on my repeat prescription including Celebrex 200mg twice daily, Colchicine (100mcg twice daily) Pizotifen (0.5mg) 2 to 3 times a day, Tramadol, Domperidone 20mg 3 times a day, Fucidin H cream as and when, Dosulepin and Paracetamol.

I also use Germoline cream as it has a mild anaesthetic in it that helps tolerate the skin problems I get routinely these days.

Before my GP suspected Behçet's I was only being given Dosulepin, Colpermin and co-codamol and I was 75℅ bed bound and 95℅ housebound for 8 years.

People with severe ME are pretty much in that same place that I was in.

My curtains were pretty well permanently closed as my severe headaches lasted for days on end and the pain was agony.

This is why the correct diagnosis at the start is so important and why I'm now working on a misdiagnosis project.

Hope this answers your question.


Stephen - I missed this! I am so pleased for you. A real cause for celebration xx


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