I have been told I may have Behcet's I am under the clinic at Addenbrooke's. I have tried to take colchicine but it played havoc will my stomach and I lost too much weight. So I am on steroids at the moment but they don't seem to be helping my ulcers are really bad both oral and genital I am in a lot of pain! I am also now trying Hydroxychloroquine which doesn't appear to be helping either.
Has anyone tried the above and how did it work for you?
Does anyone suffer from chest pain and a random heart rate? I also suffer from breathlessness and have spells of dizziness. This goes along side when I have oral and genital ulcers which I am getting every 2 weeks at the moment. I feel very run down and fed up at the mo! Sooooo tired and warn out!
Look forward to hearing from you and I hope you are all as well as can be!
Thanks Kezzle
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kezzle
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Sorry to hear you are feeling so rotten and your symptoms sound pretty scary and painful. I can however relate to them, I also take Colchicine, Hydroxychloroquine and steroids.
Firstly, have you had investigations for your chest pain / breathlessness and heart rate? I believe you can get forms of inflammation associated with Behcet's and other inflammatory disorders such as pericarditis and also pleurisy which I have had on several occasions but I would like to know you have had investigations to look at the cause of your symptoms. I also suffer from SVT - it doesn't normally cause pain but it has done when really bad, I was more prone to attacks when I was very unwell with Behcet's.
With regards to the meds, it's a shame about Colchicine but I know the gastrointestinal side effects are too much for some people and that it doesn't work for everybody. I recently restarted it but it hasn't made much difference as yet. I've taken Hydroxychloroquine for several years now but it did take a few months before I noticed any real benefit (400mg a day) the first thing it helped was joint pain and fatigue, I'm not sure it really had an effect on my ulcers (sorry that may not be what you wanted to hear.) Prednisolone remains my favourite drug in relation to what works best for the severe ulcers but I do need very big doses where I have been on it long term (40mg currently!) Starting on an immunosuppressant really helped me- especially the oral ulcers.
I go the London COE and I use a triple mouthwash solution which works very well at minimising my oral ulcers and if I do get any, I increase the frequency of it and they go much quicker tan they otherwise would have. I sympathise with regards to the genital ulcers but again at the London COE they teach me to use Difflam (yes the mouthwash!) on them as a douche and it works really well, I apply steroid ointments to them afterwards. I'm about the start a course of Infliximab to help me and my symptoms and wean off my steroids. This disease is so weird and the symptoms are horrid, it's very hard for people to understand - do you have good support?
I hope that this has helped a bit and I wish you lots of luck with your on going treatment - I hope you find what works for you soon and that you feel better very soon too. X
Thank you for your reply CrystalAngel1 it has really helped.
Sorry to hear you have the same horrible symptoms.
I have been seeing a cardiologist but they didn't think it was related, I don't think they have heard of Bechets so I will need to take some info on it to them when I go in a few weeks. I had a bad case of pleurisy before Christmas but again no link was made. The cardiologist said that he thinks I have SVT or sinus tachycardia. I def have more attacks when I am unwell with Behcet's.
How are you feeling at the moment? Do you still get ulcers? I just want mine to go and feel well! (Sorry feeling sorry for myself).
I am going back to the clinic next week so I might ask if I can try Colchicine again I just don't know as my tummy was so upset.
I've only taken Hydroxychloroquine for a few weeks now and I am taking a short course of Prednisolone. I will have to see what the docs say next week.
I use Difflam for my mouth which gives me short term relief but not heard of it being used below. I have a steriod cream which helps but they have been particularly worse this last month.
What is Infliximab? My family support me but its hard. Do you have good support?
Hi Kezzie. Ok firstly for the ulcers lots of us take a steroid Inhaler.. Clenil. Best used at onset to stop a flare but worth trying alongside your other meds. Just a few puffs in mouth, holed for 5 seconds then blow it out. Do this about at least 5 times a day reducing dose as things improve, also same down below. There are also nasal sprays and creams for skin lesions, ulcers.
As to other meds we all react differently and what works for one doesn't do so well for another. Also we have differing side effects. Personally Colchicine was very good for me and I manged to stay on it for 6 years. There are many other drugs but until you have definitve diagnoses it is a difficult for the doctors and impossible for any of us to suggest anything.
I hope this helps and do keep in touch with this site.
Sorry you are having a difficult time. I had that sinus heart fast rhythm too last year and breathlessness. I hated it, so can sympathize with you. I had a clear heart scan. A steroid inhaler improves my breathing problems - but its not classsic asthma either. I had crackles in mu lungs when it was bad at one time. Now i have been on humira (similar to infliximab) these symptoms have improved. Also, as i am generally fitter now i am not working so uch can take daily exercise i think this has helped. i have built up to longer and longer daily walks (not very far but done at a quick pace).
Hi Kezzle. The symptoms you describe are close to my current condition. IE - Dizziness, shortness of breath, run down. I have had chest pains in the past, which put me in the hospital twice. Chest pains went away on their own many years ago and have stayed away for the most part.
Dizziness is actually a fairly new symptom for me and I am contemplating a trip to the doctor. I am trying to figure which doctor to see for this and was going to post today asking if others have this and what doctor they see for it. Rheumatologist? Neurologist? Cardiologist??
Sorry I have no experience with Hydroxychloroquine. Hope you feel better.
Some people with BD have heart problems (about 6 out of every 100 people with BD). Behcet's can affect the autonomic nervous system -- it controls the everyday things that you don't think about, like the beating of your heart, pupil size, sweating, and the widening/narrowing of blood vessels to help you deal with the cold or heat. When the ANS isn't working right, you could have something called POTS (postural orthostatic tachycardia syndrome). POTS causes really fast heartbeats, shakiness and lightheadedness in the first few minutes of standing up. It can also cause orthostatic hypotension (I have that myself) where there's a sudden drop in blood pressure when you stand up. You might feel dizzy, lightheaded, temporarily lose a little hearing or vision, or even faint. I think someone else mentioned SVT, too (supraventricular tachycardia). For some BDers, problems with the autonomic system may even feel like you're having a panic attack. There's a long list of other BD-related heart problems.
You might want to see if your library has (or can get) a copy of my latest Behcet's book, because I cover all of this stuff, and it has references for your doctor. Here's the Table of Contents: bit.ly/1vgpeNM There's NO pressure to buy anything(!) -- I just want to make sure other BDers have the info I was never able to find when I needed it the most.
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