Health problems: Hi just wondering if anyone has... - Behçet's UK

Behçet's UK

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Health problems

bobthomas1962 profile image

Hi just wondering if anyone has multiple organ problems I now have heart problems lung problem which may be terminal if my tests come back positive I have a d v t plus all the other problems that go with this awful condition just want some advice on any thing or meds that may help thanks

4 Replies

Hi, I was sorry to read your message, what a difficult time. I’m afraid I don’t have anything to offer of use, but I just wondered if you are under the care of one of the Behcet’s centres of excellence? If not perhaps consider if it might be worth you being referred to one for fuller care?

I’m seeing my consultant on Friday my care is through the freeman hospital in conjunction with the Liverpool centre my consultant is brilliant hopefully she may come up with something I’m having a rough time at the minute it’s a horrible condition thanks for your repy

It sounds like you are in good hands. Hang on in there and hopefully your consultant can help you more when you see them on Friday. It’s small consolation, but remember when it’s tough like this, you’re not struggling alone and we’re all warriors surviving together each and every day 💪

Im sorry to hear things aren't good for you. I've got heart issues, I have cardiomyopathy and the inflammation from BD is causing calcification of my arteries, mainly my LAD artery which is partially blocked and is fatal in most cases if it becomes fully blocked by a clot etc.. I took ciclosporin for quite a while and the doc thinks this may have started the issue. Cardiology are keeping an eye on it and will do a stent or bypass if it becomes necessary. I also now have lung damage left by covid but it's being made worse by the BD. I've recently had a steroid injection and been put back on colchicine to try to calm down the inflammation and slow the progression. I take bisoprolol, nicorandil, Clopidogrel and atorvastatin for my heart. I hope the test results show your issues aren't terminal and can be managed with surgery and medication. Keep us informed and we are all here for support.

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