Behcet's Syndrome Society
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Jut diagnosed

Hi I'm new to this forum just looking for some advice please . I've just been diagnosed with behcets at the age of 49 have had symptoms since I was 22 !! Is this the most delayed diagnosis ever ??!! Am going back to see consultant next week to discuss medication she is recomending a combination of immunosuppressants and topical steroids for ulcers , I have used steroid eye drops for uveitis since I was 22 . Just wondering if anyone is familiar with immunosuppressants ? Do they put you at high risk of catching other illnesses ? Can you continue to Work whilst taking them ? I'm struggling to hold down my job as it is with this horrible illness . Would really appreciate any advice . Thanks

2 Replies

Hi there I can relate to your account of your illness, I started when I was eighteen with a swollen very stiff knee and then the bad back, hips, uveitis and mouth ulcers. I am 52 now and have spent the last 30 odd years on anti inflammatory tablets and steriod eye drops, the doctors were always scratching their heads with me but settled on a diagnosis of ankylosing spondylitis due to me being hla b27 positive, although I have always leaned towards behcets but felt the doctors didn't want to stick their necks out on a rare disease!

Anyway after all these years I have recently started on a immunosuppressive drug called methotrexate, this following a bad flare up that needed more than naproxen!! I take 8 tablets every Monday and have so far been the best I have been in 30 years. My aches and pains are bearable and my eyes haven't blown up in 8 month's!!! These drugs are powerful and they have to be monitored with monthly blood test due to possible side effects but for me it's worth the risk and if your body doesn't like them you can try another type there are lots of different ones!

Good luck with everything and hopefully you will see a big improvement with your condition.


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Hiya thanks for taking the time to reply 😊 It's good to know this medication can be effective and this gives me hope for a symptom free future maybe . I've been prescribed Hydroxychloroquine and methotrexate and am really hoping for a more normal life after decades of not really knowing what's going on with me ! Probably lots of you can relate to those feelings !! Staying positive and keeping smiling is what I'm gonna be doing 😀 Thanks again for replying

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