Firstly, do your ulcers 'downstairs' always reappear in the same places? If you get them around and in the bottom, do they bleed when you go to the toilet?
Secondly, do I have to accept this is it? I have SLE and Sjorgens possibly MCTD, I am on plaquenil and Azathiaprione along with a cocktail of other meds. The ulcers 'downstairs' have only started since being off the steroids. So I am supposedly on effective treatment for my illness.
The ulcers are continual since October, and no sign of stopping, I may get a couple of days free, but that is it. You have all been great giving me advice on topical treatment. My brilliant rheumy nurse is stumped as she says it is so rare. I spoke to a registrar who wanted to change my diagnosis and was more concerned with my heritage ( Did I have middle eastern family?, I don't ).
It is all very depressing really, I think I have behcets as I have positive lupus bloodwork. Anyone any advice? I am not supposed to go back to rheumy till 3 months despite my symptoms. I am thinking of going to the gp to see if I can make progress.
Any thoughts greatly appreciated, and thank you everyone for all your help so far.
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dizzy2
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Just been reading info from the behcets society. I also discovered when I stopped taking steroids that my balancewas severely impaired, along with increased vertigo, tinnitus and deafness. This led to a diagnosis of menieres disease. Also my eye sight decreased, and my eye problems intensified. It has made me wonder.
Also, my nerve pain has intensified to the point walking hurts as the soles of my feet are soooo painful. This is new for me, feels like the feet are clawing and I can't stand anything on my feet. Bit like when I can't stand tight clothes on me.
have you thought of asking your GPs if you could be referred to one of the centres of excellence, there are three;
Birmingham
Liverpool and
London
I have had Behçet's for thirty years and as its rare advice can be quiet patchy, occasionally you can get a great consultant and usually with Behçet's you have to see more than one. I have a brilliant eye surgeon/consultant but my last immunologist made me feel I had gone back in time to those early days when it was hard to find anyone who knew about Behçet's never-mind knowing the best treatments; he just wasn’t interested.
It has taken years to get these centres up and running; with much thanks to the Behçet's syndrome Society (members new and old), You can get more info and addresses from the Behçet's syndrome Society.
While all things seem so awful you are blessed with a brilliant rheumatologist.so many people on this forum don't seem to have this so remember there is always a good side.
I also have vision problems and would recommend that you become familiar with talking books. I borrow them from my local librey and an on line site so when it becomes necessary your already there.
My consultants, have had three excellent ones,have said that heritage is something they only VAGUELY consider now, but they believe there are pockets in UK where more cases present. All three mentioned this to me, I live in West Country and apparently there is a small ' pocket' here, but as I explained to them I don't come from here but HAVE lived all over the world. So from a very personal viewpoint, I think heritage is only a very small factor. The people who I have had most help from have been the Behcets society, in fact my GP refers to them if he can't answer my questions. He holds their advice to him and patients in high regard. Good luck, you can cope with this illness/condition/ , all of us have felt despair at the way it affects us, but you will find a way through it.
Thank you Felicity, I have just bought a kindle so that when I am tired I can listen to a book. I am fortunate as you say with my rheumy nurse. I hope you have good care. Sorry it has affected your vision, horrid illness.
Jennie, that is interesting. I am going to see my gp at some point to discuss the latest developments and will see what they say. I must say you have all been very kind and have encouraged me on days when it seems too much. I am wondering as years ago I had a hole on my leg that just appeared overnight down to the bone. It got infected, and took ages to heal, I may ask about it, as it looked like a picture someone posted on here. Only had a small one on my toe since though. Sop maybe not important or significant.
Paul, I will ask about the centre of excellence, it has been mentioned already by the rheumy nurse as they are unsure how to proceed.
Have you asked if you can be prescribed colchicine. This is an old, very natural drug, originally for gout and from autumn crocus. It is very effective with ulcers and joints. There are Behcet's specialists in Bristol, Leeds, Manchester and Cambridge as well as other places so if you aren't near a centre there is bound to be someone you can get to. Where are you based? Are you on Facebook?
Zebra, I am thinking of asking my gp for this med, I just need to push myself to make the doc appt!! Birmingham would be my closest centre of excellence I think, need to check that. I am on FB why?
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