And does it help? Many thanks
Hi I'm Kerry new to this site, got diagnosed w... - Behçet's UK
Hi I'm Kerry new to this site, got diagnosed with behcets today, had more bloods taken to see if I can take Azathioprine. Anybody on it?
Written by
Kerry1
To view profiles and participate in discussions please or .
Read more about...
12 Replies
•
Hi Kerry,
I too am new to this site, I only joined a few weeks ago and it has been a great help which I am sure you will think so too. You get a lot of support if you are worried or confused about anything.
I have been on Azathioprine for over 6 months now and it hasn't helped me that much to be honest although I know it does help some people. My consultant is thinking about taking me off it as I have picked up a lot of horrible infections whilst being on it.
Unfortunately I have been given quite a few different medications to try but as the Behcets has been unbearable from January nothing seems to be controlling it. I am still hoping to be given something that is going to at least improve it a bit.
I think when you have Behcets you have to try things to see if they help and if they don't you move on to the next one. What maybe works for some people doesn't necessarily work for others. Hopefully it will work for you so you don't have to suffer too much. Hope this helps a bit. Best wishes.
Many thanks for your reply, I'm not on it yet had to have the tpmt test first, hope I can finally have a drug that could possibly help after suffering for so long. Hope your ok, when were you diagnosed with behcets and do you have a good doctor? Xx
Hi Kerry,
I have been ill for the past 10 years and after being on long waiting lists for upto a year for each consultant a good few years went by without having a diagnosis. I found it very upsetting being told that my bloods were showing illness but they didn't know what I had. I now know this is because Behcets is rare and even some doctors have never heard of it. It was my Rheumatologist that finally diagnosed me in January this year on my 40th birthday. After going through my medical history he said I have definately had it for the past 10 years. I have ulcers everywhere even on my bladder and bowel, terrible bone and muscle pain, severe headaches, swollen glands at times and feel very unwell generally. As it stands at the moment I am not very well at all and nothing is working so far but fingers crossed this will soon change. My own doctors are amazing and I am grateful for that.
Up until a year ago I was generally coping better as I would get flare ups but have a break every now and then, but since, there hasn't been one day where I haven't been ill and this is what I am struggling with.
Hope I haven't gone on too much and also hope you are okay too. How have your doctors been and when were you diagnosed? How bad has it got for you?
Take care, Jo x
Hi Kerry, Welcome to the site. I too am fairly new to this site. I was finally diagnosed with Behcets back in June. To start with I was put on Colchicine which helped a little bit but not enough to suppress symptoms. When I saw my consultant last he thought that I needed more aggressive therapy and gave me a big dose steroid injection and then I started on Azathioprine 4 weeks ago. So far I haven't seen much improvement. Saying that I have been told it can take up to 8 weeks or more to take full effect. I felt pretty rotten the first week being on it and not sure if it was a combination of my body reacting to the steroids and Aza or if I had a bug and now I have picked up a stinking cold. It is still early days and I'm not yet on the 100mg dose that the consultant wants me to take. At 75mg at mo so nearly there. I did take Aza for a while when I was wrongly diagnosed with Crohns after a colonoscopy showed ulcers in my illium. The positive from that is that I was pretty much symptom free whilst on the Aza so am hoping that it will be the same this time round. Like many other people say it is a case of trying drugs to see what works for you.
Another positive is that you have found this site. We are all here to share experiences and support each other, whether we need to have a rant or have something cheerful to share. Only someone with BD can really understand how we feel, although people close to us care and support us they don't fully understand how BD effects us.
Good luck with the Aza hun. x x
Hi Kerry,
Welcome to the site. I was diagnosed with BD a year ago, having had it for the previous 7 or so years. The first treatment I received was prednisolone which dealt with the headaches, and ulcers and stomach and skin problems, but not the fatigue, joints and lung issues.
My consultant also put me on azathiorprine and it really, really helped. I felt back to myself for the first time in a year. However, it didn't agree with my liver and I had to come off it. As I'm sure you've heard a hundred times, different drugs suit different people and you have to work with your doctor to find what suits you best.
I'm now on mycophenolate and colchicine which seems to be working well for me. I'm back working full time and feeling better than I have in years.
I really hope the azathiorprine works for you. Let us know how you get on with it?
welome to the site. i have had bd for most of my life although it took many years to get diagnosed.i eventually got the correct diagnosis about 20 years ago. unfortunately it can be a while before you get the right combination of tablets that suit you. everyone is different so all i can say is hang in there your doctors will get it right. once i had the right medication my bd became well under control. i still get bad flares and am always in some degree of pain but luckily even the pain can be coped with as long as i am sensible and dont overdo things. over the years i have trained myself to do what i can when i can and to try not to let bd get the better of me and when i feel sorry for myself a always think that there are people worse than me. this generally helps me, but not always. believe me you need a positive attitude to be able to deal with this bl...y bd. chin up..... don,t let it totally beat you.....you can still have a relativlly good life with bd ( not ideal i know )....and hope you pick up soon
Hi Kerry
Welcome to the BD sufferer's club. I was diagnosed nearly 3 years ago and to start with I was on Azathiaprine but unfortunately it made he very sick so I am now on Methotrexate which works for me. I guess from the above comments you can see that everyone is different. I couldnt take Colchine as this played havoc with my liver. I have been on steroids for the whole time. I am sure they will find the right drug for you but it might take a while. But we are all here for each other and I have found this site more helpful when I have a bad day then any Dr or loved one because we all understand each other.
Keep you chin up and we are always here for each other!
Angela
Thanks to everyone that answered my question, so very kind of you all. So sorry to hear all of you suffering. It's a nasty disease. I have been suffering for 17 years. Had to fight with my gp's this year to get referred to a consultant. I went to them so say I think I was bd, I have been fobbed off so much that I took it into my own hands. I did my research on the net, and I found out I had many symptoms as of a bd sufferer. The gp's still don't believe I have it, still arguing the tose. So relieved that the consultant on Monday confirmed that it was bd. As now I can finally have some treatment for it. The whole medically system has let me down till Monday. Feel sad and scared but must stay positive. Xxxx
Hi Kerry
I'm new to this sight to ,I was diagnosed in 2010 after I lost some of my sight.
After years of suffering with it .I can remember as far back as 12 having huge ulcers and lumps on my legs that were put down to the fact I am diabetic type one which is why it took so long to get an answer and like you Kerry I had to push my gp I was put on Aza and colocine please excuse spelling but it affected my liver I'm now on painkillers and vimovo twice a day and amitriptyline at night to help me sleep but to be honest the only real releaf I
get is the steroids which because of my diabetes I can't take very often as my blood sugars go up to high so I'm in a painfull limbo with it sorry for the rant hope it goes well for you x Camie
Hi Kerry,
Sorry you have had such a tough time to get to this point, but hopefully things will start to improve for you now that the consultant has diagnosed BD.
I was in a similar situation with my GP - despite the consultant's diagnosis he just refused to call it Behcets and wanted to keep an open mind. I was very upset at the time as having a firm diagnosis comes as such a relief after many years of undiagnosed/misdiagnosed illness.
I stopped seeing this GP after that, it was just too upsetting - but looking at it now I can see that his reasons for wanting to keep an open mind was that he had had other patients who had been told one thing by the consultant and then it turned out to be something different, which had upset them (and him.) However, we patients are mature adults and if our diagnosis does change over time then we must deal with that - by refusing to allow someone a current diagnosis, especially one made by a consultant, denies that patient the chance to begin to deal with, accept, and come to terms with their illness - it's only after this stage that you can then go on to find ways to live with and cope within it for the coming years.
I was put on steroids to begin with, which really helped, then colchicine for a long time. This was great but has become less effective recently so I have just been put on Aza. My consultant doesn't believe in giving the tpmt test - much to the astonishment of the nurse practictioner! I had the test on Friday however, at her say so. If it shows anything major up then at least we can take it from there.
I have been started on 50mg but am being moved up in weekly increments to 125g. That seems quite quick to me - but there we go. Fingers crossed! And best of luck to you - keep us posted on how things go. Klaris x
Thanks to everyone who shared their stories with me, I'm up and down at the mo, even climbing the stairs at home is tiring at the mo. This surly is a fanastic site. Which I'm sure will help me more than a doctor.
Hugs to you all xxx
Hi Kerry, I'm so sorry to hear of our struggles, I've had behcets for 30 years, so welcome to the rollercoaster of bd., I have been on imuran for over a year w not much success. I pretty much have had every symptom, I have neuro behcets and recently lost my hearing. I think I ive tried just about every combo out there. Just hang in there, its vital that you get a doctor who knows and understands this disease. And kerri, you will have bad days, but please just work hard to stay positive, get as much support as you can. And be sure the people close to you really get it. Stay strong and let in only love and peace.
