Just been diagnosed

Hiya all I've just been diagnosed with Behçet's disease and was basically looking for help and advise I've been put on dapsone tablets and steroids which haven't worked at all I fact I've had a allergic reaction and had to go to hospital so my dermatologist put me on some new tablets called neoral cyclosporine 300 mg a day still with the steroids now I've been on these 9 days and ice still got the same symptoms the ulcers itching inflammation but I'm having the same symptoms as with the dapsone tablets I feel terrible in a lot of pain and worried about the affects of the tablets I've tried getting in touch with my dermatologist with no luck so I went to my GP only to be told I'm under a specialist so there was nothing he could do

I'm in two minds as to weather I go to A and E or just stop the tablets and wait for a Appointment from dermatologist any advise would be greatly appreciated

17 Replies

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  • If your really uncomfortable maybe a&e is the best bet. Bring some behcets info with you and the meds you are on as the box will give dosage etc.

    Can you get an emergency appt with your specialist?

  • Thanks for your response norahm I've been into dermatology department today and I've just been put on waiting list for my dermatologist to get back to me hence the don't know what to do with taking tablets which are making me worse stopping them or just going into Aand E or waiting for dermatologist to get back to me

    But I think If these symptoms carry on I will have to go to A and E

  • I had a reaction to dapsone also. Was on it not long after being diagnosed. What works for one person, may not benefit another unfortunately with behcets x

  • Hi and sorry you are having a hard time. Behcets is a difficult disease to diagnose average time 10 years. It is also difficult re meds as we all react differently and it is trial and error. Most of the meds taken for BD have side effects and it is a matter of balancing this against symptoms. Probably not what you want to hear is that few hospital docs know about BD and even fewer GPs. Who is your main consultant and how long have you had the disease? Most of useable a rheumatologist to manage out disease in the first instance. tRy using a CLENIL inhaler in the mouth or down below. If mouth a few puffs, rinse around and then blow out ...do not swallow. Below just a few puffs do these at least 3/5 times daily. Also try drinking Coca Cola as it will keep you hydrated and soothes the pain. Drink through a straw, mash food,nothing too hot or cold. Wish I could be more helpful.

    Billi

  • Thanks Billi that's a big help anything is at moment because I feel as though I've been on my own for years because I first started with symptoms 16 years ago only to be told I had genital warts then it was herpes so my then boyfriend ( but now husband ) had to be tested as well which was awful at the time but he was negative then it spread to my mouth nose and eyes so I have been treated for herpes for 13 years but had all the other bd symptoms like the joint pain swelling itching etc and I've been tested for rheumatoid arthritis but everything has come back negative until they took a core sample test and then that came back with vasculitus then They started treating me for that and I've had a break out for the last 14 months which isn't getting any better and spreading further I've had enough to of the itching and ulcers and the pain and don't know what to do or take but I'll mention the clenil inhaler and try the Coke cola

  • You poor dear, really going through it. Just to say that many of us have found COLCHICINE to be the best at attacking the ulcers but as I said before there are side effects with all these meds. Do let me know how you get on and I wish you better health soon.

    Billi

  • Thanks Billi I will let you know how I get on and I'll put this colchicine across to the dermatologist see what he says

  • I've been on colchicine for 15+ years and it's the only med that's always helped with mouth/genital ulcers. The only advice I can give if the doc prescribes it for you -- ask if you can start sloooowly. It can cause serious diarrhea, nausea and cramping if you start at too high a dose (that's what happened to me), so my doc started over and prescribed one 0.6 mg pill every other day for a week, then once a day for a week, etc. until I could tolerate two pills per day (once in the morning, once at night). These days I only need one pill per day, with a short increase to two if I flare.

    Joanne Z.

  • Sorry, you need to change Consultant. Dermatologists don't have the experience to treat a multi system disease like Behcets, they have put you on a peculiar set of medications.

    If you are in England ask for a referral to a Behcets Centre of excellence. If not in England then try and find a Rheumatologist with experience of treating patients with Behcets.

  • Yes I'm in England near Manchester is there Behçet's centre near me

  • Hi,

    Your nearest centre is probably Liverpool( the others are in Birmingham and London ).

    I have posted a link to Prof Moots who is the lead clinician in Liverpool. I know for a fact that he is more than happy to speak to fellow Consultants by phone or e mail and offer advice ( they have a 18 week waiting list ).

    Could you suggest to your Consultant that they get in Contact with him?

    You can ask your GP or Consultant for a referral. It is a national service and centrally funded so it doesn't cost your GP or health board anything.

    Good luck, sometimes we have to push and ask questions to get the care we deserve.

    liv.ac.uk/ageing-and-chroni...

  • Some more info!

    behcets.nhs.uk

  • Hi Hun,

    I cannot emphasise enough just how important it is to get the right person for your treatment and i applaude everything Keyes has said in pointing you in the direction of Prof Moots who runs the Liverpool Behcets Centre.

    I have been treated by Prof for around 12 years now, long before the centre was even formed and he truly is a life saver for me. He was the person who diagnosed me after many years of suffering and anguish and my admiration for his skills and talents is endless as i place my own personal care firmly in his hands and those of his specialist team in Liverpool.

    You MUST get referred to this centre and into his care asap for your own sanity ! One of the team is a dermatologist called Wendy Farrar who is a fabulous professional in her field who works closely with Prof Moots to care for my personal skin issues and again, i can only applaude her talents and say a huge thankyou to all the team in the centre, especially the nursing team who all go to make the whole experience a very relaxing and friendly environment where i feel i am truly in the hands of the people who understand and care for me personally as an individual.

    What else can i say to convince you that this is the place you need to be ? 👍😄

    You must insist on getting a referral to the centre as a matter of urgency. Dont take no for an answer !

    Good luck and hope to run into you at Liverpool someday soon okay ? Mwah !

    Take care,

    Big hugs

  • Excellent advice - perhaps put it in writing to your GP if they hesitate to give you a referral.

  • Thanks everyone I've been on the Behçet's centre website and I've listened to all your comments and I feel like this is definitely the best place to be because they will understand how I'm feeling and what's going on so I've book an appointment Monday to see doctor to get a referral because my dermatologist got back to me with an appointment for the 13 th Nov even when I said I was in agony his secretary said that's the only time available which I know it's only a week off but a week can seem a long time when your in pain so hopefully I will get an answer on Monday from my GP well basically I'm not taking no for an answer I'll give you an up date Monday

  • Stress the appt doesn't cost them anything as its a centrally funded service. Good luck!

  • Will do ive written everything down in a letter then I don't forget anything

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