Possible Bechet's

Hi all my name is Zak I'm 32 years old and currently having a severe flare of pan uveitis which has practically not responded to treatment and bucket loads of steroids. Started immuno suppressants myfenax and having some success although still active inflammation has reduced. I stumbled across Bechets as a cause of pan uveitis and was shocked that throughout my life at various stages had almost all the common symptoms. As a child had a severe mouth ulcer outbreak and since have the odd sore on my lip very painful always put down to a coldsores even though looked different. At 17 had a major flare up of what was told eczema however was circular and small blister like spots and it spread all over had big patches on back of legs knee area and arms. Had flare ups of iritis from around 17 and every couple years since but never pan until now. I always have a rash on either cheek that never bothered me much. Putting all these pieces together has me convinced I'm suffering with a mild version as my skin is all but ok since the flare that lasted a year or so in my teens my eye has always been acute and treated with drops within a couple months. Just worried what the future holds if I do have this and is it now becoming more serious in its nature.

Sorry for such a long post this is all new to me :)

12 Replies

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  • Hi Zak,

    Are you in the UK?

    I would get a referral to a Rheumatologist who has experience in diagnosing and treating Behcets so that you can get a proper diagnosis and expert treatment. If you are in England there are 3 Behcets Centres of Excellence ( C of E's ) in Birmingham, London and Liverpool. They are nationally funded so referrals don't cost the GP anything.

    behcets.nhs.uk

  • Yea I am in the UK! My eye dr has me an appointment with a rheumatologist on the 12 Dec for poss AS but I hadn't discovered Behcets at this time. I'm due back at Manchester eye hospital on the 9th of December so may wait til then to discuss the possibilities of me having this disease. My wife is telling me to go to my GP before hand but I feel like I want to tell my consultant first as she's been dealing with my pan uveitis and treatment of pred and myfenax which I believe is a possible treatment for behcets also?

    Since my treatment started the numb hands and sore wrists has completely gone. My cheek rash has also gone. I sometimes get the odd small blister down below and had nothing. So treating my eye has had some positive effects elsewhere so I'm not presenting any other symptoms apart from my eye at the moment and think they may not diagnose unless I have more symptoms? Had 3 seperate attacks of a big blister on my lip this year tho and uveitis and before treatment my wrists were a mess and affecting me at work I thought was Carple tunnel but docs said unlikely at my age.

    I think I will talk it over with my eye dr on the 9th and hopefully get a referral to the COE. Just a worry as see from this forum that this illness can be far worse than anything I've experienced.

  • Hi Zac,

    It's important to note down all the symptoms you have had over the years such as the ulcers, rash etc. Taking pictures of them to show the Dr's are a good idea as well.

    The problem with Behcets is that the symptoms can present over a number of years so any Consultant should take a thorough history going back years. The fact that you are responding to treatment is also another diagnostic clue. Quite often Behcets presents without any rise in inflamatory markers such as ESR or CRP although not every Consultant realises that!

    It's interesting that they are going to rule out AS as I have a Behcets/AS crossover but no eye involvement. It is so very important to see a Consultant with experience in Behcets as its a complex, rare illness which is difficult to diagnose but there are very good treatments out there including biologic drugs.

    Be aware that potentially having a rare disease is a game changer, sometimes we need to push, ask awkward questions and not give up in our quest for answers. Good luck.

  • Hi ZacStuttard

    Thanks for your posts. Keyes raised some very valid an interesting points. Please email us for more information info@behcetsdisease.org.uk and details of your nearest Behcet's Centre of Excellence, which may be in Liverpool. It will be good to see your specialist on 9th armed with as much info as possible and they will be able to refer you, if necessary to them. Lots of further info on our website too. behcets.org.uk Good luck with getting the correct diagnosis and treatment. All the best to you.

    Julie

  • Thanks! I have been reading over the website found it very informative. Liverpool is the closest centre to me. I live in blackburn in the north west. Just wish I had pictures of all the symptoms over the years but if anything flares in future thats the first thing I will do. I will post back after the 9th with how it all went. Hoping my gp will have records of my appointments regarding my wrists all the steroid and creams I had whilst my skin was bad and the numerous eye problems so if they need a bit of history it is there!

  • Good luck this week.

  • Thanks I've thought about it a lot this last week or so and I'm looking forward to discussing with my eye consultant on Friday. Bit worried it will be dismissed as not presenting anything other than pan uveitis. Hopefully they will listen to my medical history and look further into it.

  • Good luck.

  • Keep a food diary.

  • You think diet can make symptoms worse? I cut caffeine as sleep was hard with the pred. My diet is relatively healthy but could certainly be better. Not drank much since all the meds as well. My consultant dismissed diet when I asked about my uveitis saying my immune system was at fault. Also i stopped my supplements b vit and omega 3 and stuff as was worried I was boosting my immune system would you recommend any vitamins supplements I have to take calcium daily but that's it at the min

  • Hi Zak

    I have bilateral posterior Uveitis and am under treatment at the Bristol Eye Hospital. I have just come off a run of Humira (Adalimumab), quashed the Uveitis totally with minimal side effects, though not work for everyone. Perhaps look it up and go armed with a bit extra knowledge when you see a specialist. The most likely reason to resist giving it, other than suitability, will be the cost factor.

  • Thanks for the reply! I told the eye dr about behcets and symptoms id had over years and they said not typical of behcets and dismissed it. I was referred to a rheumatologist who couldn't find anything wrong with my movement and he just started me on more bloods and x rays with a follow up in 3 months.

    My rheumatology dr said he had access to better drugs and I have to be under him for 6 months to be eligible and also possibly need to present more symptoms before Id get access. Not sure if this is humira as he never mentioned names but said it had good results with uveitis when they had used it to treat arthritis as well as eye inflammation.

    Thanks for the info il mention it at my next app in Jan. As it stands my eye dr is keeping me on 2g daily myfenax and very slowly tapering my oral pred and pred eye drops. I still have active inflammation in my eye so would be keen to try a new treatment.

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