Is anyone suffering cardiac problems due to behcets or alongside? I have developed calcium build up in my LAD and have been prescribed bisoprolol, clopidogrel, a statin and a vasodilator by cardiology. I have told them about the behcets disease but they don't seem to take it into account as the statin clearly states on the information leaflet that it should not be taken with cyclosporin or colchicine and I take both. I have stopped taking the behcets medications as I have been told of the dangers of a full blockage in that particular artery. Also when taking the vasodilator and clopidogrel I am getting severe headaches which feel like pressure all over my head and face and behind my eyes. I am also getting pain in my ears. This has not gone away since I started these medications and I am feeling anxious as I know both medications can cause hemorrhaging in the brain. I told the cardiac nurse of my fears and was told if I noticed any bleeding from anywhere I should see my GP. Obviously if it was a bleed in my brain I wouldn't notice any external bleeding. Could anyone offer any advice please?
Cherie
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cherie1w74
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I have heart problems but are different to yours as its a mitral value prob and calcification of a main artery. I am still undergoing tests as they are not sure of the severity. I have been referred to a cardio dr who has special knowledge of behcets its meds and the possible twists and turns this disease takes. I think I would first establish how much knowledge your cardio dr has regarding behcets.
Thank you for replying. The best thing is I've not even seen a cardiac doctor yet, just the specialist nurses. They've just put me on the medication and said they'll see me in a month at which point they'll decide whether I have an invasive angiogram to determine whether I need a stent or a bypass; or they'll continue with the medication long term. Whichever they decide it will all happen before my next c of e appointment which is in August. I've made an appointment with my GP for next week who is quite clued up on behcets to see what he recommends. I just don't know whether to carry on with the vasodilator in the meantime. I hope all your tests go ok and you get the correct treatment.
Can I ask which c of e you are under? For myself I would not be taking anything a specialist nurse gave me until I had seen a cardio. Behcets is such a difficult disease to deal with at the best of times and if you have found medicine that works to control it I would not be messing with it. You are completely within your rights to ask for a 2nd opinion might be worth a go. Gp sounds like a good place to start. Let us know how it goes.
I go to Liverpool c of e. I only started taking the medication as they scared me saying that the area which has calcification is the most dangerous place and a full blockage due to a clot can result in sudden death. I thought it was better not to had around and start straight away. With the risks of hemorrhaging though, I feel like I'm being told to choose the way I want to die...heart attack or brain bleed....I'm dammed if I take the medication and dammed if I don't!
Thanks for speaking to me about this. It's good to be able to talk to people who understand. I'll keep you posted.
I Think health professionals can over state the problem making us feel bad if we don't take the medicine. As you say dammed if you do dammed if you don't. How was this problem found what test did you have? Can I ask what does LAD stand for.
Liverpool CoE has a helpline and email that you can contact them on anytime and if there are complications in your care for Behcets or the other issues you have with your heart I would suggest you contact them today or first thing tomorrow about this current health problem.
They may ask for you to come in to get appropriate care that deals with your heart issue and the Behcets with medications for each that will work together. Tell them all your symptoms when you went in and new symptoms, what you were told you have, what they have put you on and how they have recommended you stop your Behcets medication.
If they don't need you to come in, or it is too far they will definitely be able to give appropriate advice to your GP about what you need now.Tell them you are going to your GP and ask if they can contact you and them with immediate care recommendations. If you do not hear from them by tomorrow afternoon , keep calling until you do, this is not a time to wait and see or delay. You may be better getting an emergency appointment with the GP after speaking to them tomorrow.
The nurses may be specialists in their field but they are not doctors with experience of Behcets , how it changes and how changing medications could affect your health. Realistically, they have given you the immediate assistance required for what they have seen in their field , which, appropriate in the majority , may not be right for you with Behcets , at the least you should have been seen by a cardiac doctor with experience of auto immune patients when you presented with Behcets before changing or administering medications .
Your reactions could be to do with a sudden change in your medication as well as the coronary issues.
Unfortunately, many medical professionals don't know about Behcets and it's seriousness and so don't account for its affect on you while experiencing other conditions. If you are in Liverpool area , it may be a good idea to go to Aintree, if not , and you feel so bad, I suggest you go back to A and E , and ask them to look again and contact the Behcets team to check what is appropriate.
Don't panic, it will make you worse, but you should get more help now.
has anyone ever mentioned Sarcoidosis to you? Or the reason for the calcium build up? Its a common finding in Sarcoidosis and some of the things I encountered at my first CofE consult got me thinking about either not Behcet's or possibly Behcet's and Sarcoidosis. my problem is I am not flaring so... good in a way for me but no big ulcers to show, apparently no big flat ulcers, which i really don't want to let happen, not even sure they happen anymore, millions of small ones, which don't count!. Years of nasty rotting tongue cankers, but no evidence, maybe it will be different when I see the oral person. Thus I started thinking for when I go back what else they are likely to say, I have lumps in my throat and on my tongue and all over. I came across the calcium build up and heart problems and remembered your post.
Hope you are doing OK and your dilemma is getting sorted.
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