Recently diagnosed with Behcets - living in Ireland

Hi All,

Im delighted to have found this site/forum. There is nothing like this in Irleand and no specialists in Behcetsonly only seems to be rhuematologists with an interest or know the symptoms to be able to confirm diagnosis.

I was diagnosed about 6 weeks ago after 7 months of feeling unwell. in the 7 month period had 18 tonsilitis's, 2 reactive arthritis and regular mouth Ulcers. Finally decided to get my tonsils removed as felt this was the main problem but having them removed was the catalyst to getting diagnosis. Still felt unwell after tonsilectomy and then started to get blurred vision. Got the Uveitis confirmed in the eye and allowed the diagnosis to be made.

I feel lucky to have got the diagnosis good and early and hope this might limit the severity of this disease.

I am on methatrexate and steroids to reduce inflammation in the eye. I have noticed a rise in my energy levels in the last few weeks, as have my anxiety levels, I have returned to work, have amended my diet and rest when I can. I have appointment on thursday with rheumatologist and have been hearing great things about TNF's, enbrel and Azathioprine as being better suited in the treatment of uveitis in the eye,

Has anyone any positive/negative experience of these drugs, I just want to make sure I am taking the best medication to stabuilise the vision if at all possible.

Does anyone know if they are available through the HSE in Ireland?

I would love to hear others experience of this disease/syndrome, particularly in Ireland.

Thanks for reading,

good luck

Darran

19 Replies

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  • Hi Darre sorry to hear you cant find a specialist in Ireland, ive come across this arthritisnorth.com/patienti... not sure if its of any use. Good luck. x

  • Hi Tamirra,

    Thanks for the information, it looks useful alright- I'll probably end up seeing specialist in the UK though to get the best advise on medication.

  • You will find that this is a great place to find support and info from fellow sufferers.

  • Thanks

  • Hi Darran,

    You are on the correct treatments for now. When you said you were more anxious, what did you mean? Steroids can cause increased anxiety, and after being on them for seven years I have now been clear of them for nearly four years!

    I am currently on Infliximab and have had wonderful eye disease management for six years. My eyes (uveitis) were very serious but Infliximab anti-TNF has worked wonders. These groups of drugs are also considered more effective with eye management than other immuno-suppressive drugs. Mention this to your doctor. Saying that, infliximab does not work for everyone, so be prepared for some trial and error.

    Remember to come on here with any questions you have and people will be more than happy to share their experiences.

    Good luck mate, solidarity, Tim

  • Hi Guevara,

    It was actually a typo about the anciety levels , they have reduced in the past 3 weeks a lot. I will ask rhuematologist tomorrow about infliximab as want to get the best drug treatment.

    Thanks for your advice.

    Darran

  • Hi Darran

    I've also found this to be the best forum by far. In a way you were 'lucky' to be diagnosed so quickly.

    Just remember you can always make the posts 'visible only to this community', if you don't want the whole world to read it, and also send messages if you want to make the conversations even more private.

    I'm just saying this from experience - I've recommended this site far and wide and then lately wondered who was reading this. A lot of us have been bottling up a lot of things and as another member mentioned it is 'like a dam being burst'.

    Just out of interest sake, within the past two years I was combing the internet looking for information and came across a study done in Ireland a few years back. From memory they estimate at the time there were about 24 sufferers (apparently it worked out pretty close to the right statistic population wise). Of course this might have changed - if I find it again I'll let you know the site, otherwise you might try googling Ireland and Behcets and see what you come up with.

    Lesley

  • Thanks Lesley,

    I'd be interested in the name of the study if you come across it. I was told at the clinic I attend that there have about 30 Behcets patients on there books in the west of Ireland!!

    Darran

  • Hi Darran pretty sure this was it

    Primary association of HLA-B51 with Behçet's disease in Ireland

    ncbi.nlm.nih.gov

    It was written in 1997 (!) so it makes sense that the numbers have increased.

    Lesley

  • Hi Lesley,

    That's great, Thanks. Ill have a read this evening.

    Darran

  • I'm an Australian however it was a visting Irish Dermatologist who diagnosed me (on the day he saw me) - which was after 10 years of misdiagnosis.

    Heavy reading (I'm an ex-medical secretary) - interesting if you come up with anything interesting.

    Lesley

  • Hi Darran I also have uveitis.The other drug you should consider is Interferon Alpha,it has kept my eyes quiet for three years.The only downside is that can make the fatigue worse.

    Good luck

  • Hi,

    Thanks for your comment. Out of interest how long after getting Uveitis was it before you started on Interferon Alpha and does it depend on the severity of it in the eyes?

  • Hi Darran, I'm pleased you've found the forum and glad you're finding it useful. If you're still looking for a consultant in Ireland, the Society keeps a list of consultants who are or have treated Behcet's patients previously. We're aware of consultants in both Belfast and Dublin. If you'd like to obtain a copy of the list, please contact our Admin Office, details of which are on our website behcets.org.uk

    Thanks

  • Hi Darran, I am finally getting round to answering you, I am in Galway and I have Behcet's, I have a dermatologist, neurologist and rhumatologist here it was the dermatologist who diagnosed me after me having spent years looking for an answer! Last week I was with my GP who told me that he now has 2 more patients with Behcet's and he must have been reading up on it - at long last - cos he seemed a lot more informed. I would be happy to share my doctors info with you if you want it!

    Take care.

  • HI Cailin,

    Thanks for finding the time to answer. that sounds great- id be happy for any information.

    thanks

  • Hi it took me about that long ie 7 months to get a diagnosis and nearly had a painful biopsy due to my GP's ignorance. At the early stages I could not get out of bed and had ulcers top to bottom all the time. I was referred to Chesea and Westminster Hospital and I have been able to lead an active life as a very succesful professional running around the world, have a third child and enjoy life to the full. I have not had an ulcer for 12 years. I started off on trental and then Azathiorpine. I am a long way from where I was prior to diagnosis and very thankful to my doctors who have been great. I hope you also are able to control your symptoms.

  • Mpitt that is so comforting to hear, thank you so much for posting. I have been convinced for some time that the solution is finding the right medication - and we all react differently so it's a difficult one.

    Up until a year ago, my BD was well controlled and I was out and about and quite active. For the past twelve months though I've been on a downwards trend and I have no idea why - nor do my medical team. We'll get there though, I'm certain of it!

  • I hope so. I was suicidal at first and so it was a great relief to find medication which works. I had to add Azathiorpine to my meds after 9/10 years because he Trental stopped being as effective but I have over the last 12 months weened myself off the trental. I have to remind myself some times that I have BD. When i get tired I take iron and that helps too. Good luck.

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