Any Help Appreciated AZATHIOPRINE (New Kid on The Block)

I have lurking on here reading a few posts, I have been told for the last few years that I had Behcets but didnt want to accept it and had a run of emergency eye admissions with Uveitis, always in the same eye (right eye). symptoms were mouth ulcers, extreme exhaustion, which really hacked me off as I have always been a fitness fanatic, marathon running, cycling kettle bells, some really tough training . I was advised to go on AZATHIOPRINE and asked my daughter who is a sister in Walton Neuro Liverpool. she said it was Low Grade Chemotherapy, which alarmed me and I refused the treatment, I said I would try and change my diet ect, loads of tumeric, pineaple, anti inflammatory foods etc, and things seemed to be improving with no further outbreaks of Uveitis, just tiredness and mouth ulcers, with aches and pains that were bearable. Then after suffering some severe stress, BANG! I had a flare up of biblical proportions, totally wiped me out , could hardly turn over in bed, fingers swelled like sausages red and hot, Looked like Gout, also had ulcers that kept me awake at night., and ended up in hospital with a corker of a right eye again UVEITIS which can be really painful too.

I have been given Colchicine by my GP after he called rheumatologist who was very good and rang him as soon as she got back from Holiday, but they make me feel really sick.

Ok I will stop waffling - to the point , is anyone on here that can manage a semi normal life on Azathioprine ?

How bad are the side effects ?

do you have to inject yourself weekly or something like that ?

Basically I am moving towards accepting that maybe this Azathioprine is my only chance, as I didnt realise till reading on here that the flare ups tend to get much worse as time goes on.

Nobody told me anything about lifestyle changes that can help, food choices etc, I just wish I had found this site a few years ago.

you mention Behcets to most medical people and they look at you blank as its such a rare condition and so elusive to diagnose for the medical fraternity

Thanks In Advance for any input.

19 Replies

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  • Welcome. Firstly, sorry to be abrupt but I have about 5 mins to type this response and if I can I would like to put your mind at rest a little; - Flare ups do not necessarily get much worse as time goes on. Aza is not your only chance. You may not have the same reaction to particular meds as someone else who is on them.

    There are many types of treatment, it can take a while to find what suits you.

    There are many different symptoms and degrees - not everyone is the same.

    As there are currently no medications specifically for BD, other meds are used, such as the low grade chemo you mention, immunosuppressants and so on. There are also topical treatments. These can work well.

    If you are in the UK you can get a referral to a Centre of Excellence where you will get advice from different specialities, including management.

    Many people with BD live normal lives, it is possible to go into remission and also to get your symptoms under control. Again this is different for different people, but I do just want you to know that all is not lost! You will get plenty of support and advice on here and it won't be as blunt as mine, but as I said earlier, I just have time to try and put your mind at ease on some of the points you make.

    And finally for now - if you type azathioprine into the search box on the top right corner you will see lots of discussions about it which may help you.

  • p.s. No disrespect to your daughter, but she is of course quite rightly telling you what the meds are USUALLY used for, you really need to go with what a BD Specialist advises.

  • Thanks for taking the time to reply, I guess my daughter is just looking at her MIMMS drug booklet, and sadly in the Neuro side of things AZA is often used for people with serious problems. thanks for the tip about the search function, and dont worry about being blunt tigerfeet, after all its real life scenarios and accounts from other people who have to deal with this disorder that I need to hear from. thanks again.

  • Hi. Sorry to hear about your bad flare ups. I am reletively new to this too, so far been on prednisilone, colchicine which also made me feel so sick and terrible tummy cramps. I am currently on day 10 of azathioprine. Felt sick and queezy on them and had tummy cramps and headaches which I get anyway with the bd but today it has eased up and haven't felt too bad! Got to up the dose on friday so will see what happens then. Am also still on 15mg of prednisilone which they are going to reduce down.

    Everyone is so different on each of the medicines, think its just trial and error and see what works for you. Was petrified taking the tablets after reading all of the side effects.

    If you don't get on with the aza they will try you on the next one.

    Good luck with it and keep us posted on how you get on :)

    Good place here, lots of lovely people and info.

    Jo x

  • Hi Joanne, thanks for taking time to reply, is it tablets or injections you have to take with AZ ?

  • I am on tablets, I didn't know they did it in injections, would hate that :(

    On weekly blood tests to monitor liver function and bloods, they can lower your white blood cells and other things so they monitor your blood regurlaly.

  • Hi Fleagle,

    Sorry you have been having such a rough time - I really feel for you.

    I've had BD for a long time though it took some years to diagnose it. Like a lot of others it seems to fluctuate and go in cycles.

    Sometimes I feel pretty well (almost normal!) which would have been hard to predict when it first got its grip into me. I would say that altering my lifestyle (no drinking, smoking, careful with diet, doing the minimum when possible, trying to avoid stress - ha ha!) has been vital in managing the Behcets. I'm sure all this helps, even if it doesn't go anywhere to curing it.

    I was put onto Aza in early November, as the colchicine was no longer so effective. I am on tablets - 125mg a day.

    I mentioned in another discussion that apart from the odd bit of nausea to begin with, I have found no side effects so far. Although it's early days, I do think it is helping - not yet with the ulcers or headaches, but I do feel as though the fatigue is better than it was and as though I have more energy now.

    Really wishing you all the best, and would love to hear how things are going for you.

    Klaris x

  • Hi Klaris

    Thats brilliant that the AZA is working for you! My consultant said it can take a good while to work so fingers crossed it will also help with the ulcers and headaches down the line. Feeling normal is just amazing!

    Thank you, wishing you all the best also, Merry Christmas :) xxx

  • Thanks Joanne :-)

    I have been wondering how you were getting on - hoping that the Aza begins to kick in for you soon.

    Hope you also have a good Christmas - have you got little ones to enjoy all the fun with? xxx

  • Hello Joanne - good to meet you. I think you've got the information you need now from those who have written above so I'll just limit myself to two things:

    1. A number of us are ex-health professionals - senior ones at that! We have had to learn that our past knowledge cannot be applied to Behcet's! When I was put on methotrexate, 5 years ago, I was terrified because I was told that too is a low grade chemo. But after a long talk with my specialist I agreed - and I've come to no harm whatsoever. All drugs have side effects of course, which you should tell your doc about asap. Because my methotrexate wasn't working to well I was transferred to another drug - Leflunomide - which had me in hospital for the side effects. It really is all just trial and error. If it helps, think of yourself as a pioneer!

    2. You've found a spot-on place to help you through your Behcet's career (well, it feels like a career!). You will get all the support, virtual hugs, and laughter you need. What you won't get is medical advice not only are we not allowed to do that, Behcet's is such a rarity that none of us has the expertise.

    For the most part you will find all the clinical information you need here behcets.org.uk/menus/main.asp and if the information is not already on the site, the BSS team are very helpful and will point you in the right direction.

    Now pull up a chair and have a cuppa

    love

    Di

  • thanks for the responses to my questions, got cyclopentolate in my eye today as uveitis is flaring up again, bit of a sod typing with one eye !

    Joanne - my mate is on AZA injections once a week, self administered subcutaneously, though its for a psoraic arthritis rather than Behcets.

    seems like some friendly folks on here with "real answers" to my queries. I would rather ask a person who is on the meds about the effects they have on their daily life - than rely on a pamphlet that was written by someone who has never taken the medication.

    best regards to all. Fleagle

    ps helpful link you posted there Di thanks x

  • You're welcome, fleagle. Couldn't agree more about the experience being a darn sight more valuable than the pamphlets!

    This site has been such an eye-opener for me and answered questions and worries I had carried for a number of years. Mostly the answers went along the lines of, it's normal and most people with BD get this. That is so reassuring!

  • Yup it certainly comes in many guises, I didnt realise that the mind blowing headaches I experience are part of behcets .

    During one episode II was on the bedroom floor holding my head in my hands at 4am one morning, I thought I was having a neurological event , but thought "now you are being silly! But I almost woke my wife to ring an ambulanc.

    I have had a few more episodes, followed by days of a "pressure" like feeeling in my head .I saw a Rheumatologist who said "oh they are just migraines and you get spots in front of your eyes yes"

    I almost punched him, then because he said the pains in my fingers were Just " old age" (dunno what charm school he went to ).he said "you need to do some excercise" !!!!

    I am a 56 yr old ex commando and I am still fitter than most 30 yr olds, always kept my fitness up, and I could have shown this doctor a clean set of heels at any physical discipline he cared to mention prior to behcets rearing its ugly head.

    I felt like he was insulting my intelligence, but put it down to the fact that he was just enjoying the sound of his own voice, rather than listening to what I was saying.

    I have since seen another Rheumy who is a lot more switched on, when I told her she sent me for a brain scan (slightly different reaction from the other clown)

    Thanks again for all the input, its quite a relief to know there is somewhere to find out the real life impact of this BD malarky.

    I didnt realise how serious this condition can be.

    cheers everyone. out......................

  • I really do sympathise about the headaches - when mine are very bad they are the most painful thing I've ever experienced (and I've had two children!)

    Words fail me about that first rhuematologist ...still, it sounds like you are more than capable of dealing with someone like him!

  • Hi, It's great that you have found this site. It really helped me to know there are other people out there that know how it feels to have BD.

    I have been on Aza for a few months now and am feeling so much better. At first I felt awful and was suffering with really bad ulcers, headaches and nausea. I stuck with it and it seems to have paid off.

    Unfortunatally Aza doesn't suit everyone but thought I would give you an example of success.

    C x x

  • Thanks - that's really good to know :-)

    Klaris

  • Hi

    Nice to meet you. Iv been on Aza tablets since the begining of Nov 2012. Its either them or the pregablin that i started about 3 weeks ago that are starting to work, but im getting a lot of my mobility back. Like yourself I was a fitness freak working out every day, zumba, yoga, pilates etc etc. even kickboxing. overnight literally bang in a wheelchair (june 2012) took me months to get someone to listen to me seriously... most specialists are up their backsides if you ask me.

    Im under liverpools behcets centre and they are great there, iv had a few moments were iv wanted to spit my dummy out, and a few moments where iv had to to get the help iv needed but im getting there.

    im also on steroid injections having my second one on thurs this week. Apt they can give me up to four or five of these a year. I dnt even know what they are. I experiecne a bit of a flarer (i say flarer as iv never come out the flare i entered in june tbh but symptoms increase for a while such as ulcers) I have constant arthralgia ibd and migraines. migraines are now under control due to the behcets neuro i see and prof moots etc. the pain management dr i saw three weeks ago dr wiles was just fantastic tbh! Hes takenth e edge off my pain levels sooo much, i can do much more with my kids now! still cant push it too much as the fatigue kicks in loads, but im getting there.

    I had a little tiny and i mean tiny bit of nausea when they were increased to 150mg a day for about three to fours days and since then no side effects. i went through about three days of random bruises too. but i seem fine. my urine is illuminous yello practically ha ha, but im ok on it tbh.

    hope this helps

  • Wow Lizzy, sorry to hear how BD has really flattened you - I didnt realise it was so damaging. just popped in and saw your message (I dont come on too often) I wonder with all that megga excercise you were doing whether that has damaged your immune system ?? I only offer that as I wonder about it myself -I have always been a lunatic with physical training, running 80 miles a week doing 2hour kettlebell sessions and boxing training.

    I found out that you are only supposed to do MAXIMUM of 45 minutes of heavy kettlebell training but typical me - more means better RIGHT! - obviously WRONG :(

    I often wonder if this has contributed to my immune system problems - though I have also suffered from PTSD since my service in the Falklands war , which prevents me from sleeping properly and can affect my health badly at times with severe anxiety hyper vigilance.

    I just realised I sound like a right dripping sod so I will sign off for now. Best Regards to all on here and thanks for your input guys . Rgds Fleagle

  • im on 150mg of pregablin twice a day, and 30mg of morphine twice a day which really has taken the edge off the pain, i can still feel pain, im still sore etc but that edge has gone thankfully. x

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