Behcets and strokes

[Marie2169]

Evening

I would love to hear from anyone about behcets and strokes. As o had a stroke back last year and also I have crohns in my small bowel. Would like to no if behcets caused the stroke and if so. What treatment is there so it dont happens again.

Thanks

[CeeJay12]

Hi. My 13yr old daughter had a stroke in May 2015 which was completely unexpected & they couldn't find the cause of it. She was doing very well and then in the October was back in hospital with numerous problems and that's when they thought she might have Behcets. The following March she was diagnosed with it. She also has Colitis. They said the Behcets caused her stroke and was on Warfarin at the time. They stopped that as, with Behcets, the problem isn't with the blood but with the vessels themselves. The vessels become inflamed which restricts the blood passing through and therefore can clot. She's now on Azathioprine to control the Behcets and inflammation.

[Marie2169]

Thank you ceejay for your reply.

Iam on a blood thinning medication. I can not help thinking to will happen again

[B130859 in reply to Marie2169]

Hi

I am 57 yrs old and have also had a stroke last year plus 2 heart attacks at 39 yrs and 47 yrs I was diagnosed with Bechets over a year ago now attend The Bechets centre of excellence in Liverpool under Professer Moots who is absolutely fantastic x

[Marie2169 in reply to B130859]

Thanks

What medication do they give you to prevent you having a stroke again. Did behcets cause it. Are you under a Neuro consultant for it. So is it inflamation in the brain. Do you get any symptoms with it.

[B130859 in reply to Marie2169]

Hi

I'm on clopidogrel and beta blockers statins ramipril and several other meds unfortunately I suffer with acute angina I'm under professer Moots at The Liverpool Centre of excellence and his team he was brilliant and I am waiting my next appointment with his team with himself the nuearologist cardiologist and the stroke team as the problem I think we all have is that our GPs and local hospitals doint know anything about Bechets disease therefore only treat the symptoms that we have as they happen I went through a long assessment and a lot of test to eventually be diagnosed with Bechets disease I was HLA B51 and HLA B27 positive and have suffered all these years before I was diagnosed also I am on high doses of steroids as my liver enzymes where highly elevated by the autoimmune meds but I am gaining weight put 2 stone on in 3 months .

[Marie2169 in reply to B130859]

Thank you take care

[UKADMIN Partner Behcet's Syndrome Society]

Hi Marie2169, We hope you got some good answers to your questions from the wonderful members of our group. If you are at all worried, don't hesitate to ask your consultant or GP for more advice. Write down any questions you have and don't be afraid to ask them. Good luck with your current treatment and best wishes to you.