I've had crohns for the last 12 yearsand on mesalazine for the last 10years. I've now been told my crohns has got worse and the next step is Azathioprine. Doc went through all the things that can happen taking these tablets and I'm not wondering if this is really the next step. Although it may ease my symptoms, which at the moment don't really interfere too much with daily life, the risks of this medication seem quite high. Really confused. Is there anyone one on this medication that can help?
Hi, I have had crohn's since 2010, have tried different medications and have been on Infliximab infusions since 2011 and Mercaptopurine tablets. My specialist thought it would be good idea to try Azathioprine and so I gave it a go, never again, my ankles and feet blew up and I looked like a sumo wrestler and was very moody. I got in touch with specialist and we decided to stop the Azathioprine immediately, my feet and ankles are now normal after 2 weeks but unfortunately taking no tablets has given me a flare up hopefully next week I will be back on the Mercaptopurine. Good luck
I have been on Azithriopine for a while now, best move I ever made regular blood tests and u will be fine xxx
I tried azothiaprine last year and it was awful; I felt spaced out and had to stop driving and 4 or 5 weeks later i started to vomit every time i took it. Needless to say i had to stop taking it. Some people get on fine with it tho. I am on mercaptopurine now and haven't had any of those severe side effects
Hi Kelaimee, I have crohns for 8 years and I am on Azathioprine for flare up. I got told to up dose but it made feel really sick, so went down to three tablets again.
Hi, I have had crohns for 7 year. On Azathioprine 50mg for flare up I just have too wait four months to see if the tablets work. I was on the higher dose just felt really unwell. hope it works for you.
Hey, I've had Crohn's since 2010 and Azathioprine has been my main medication. I take 5 tablets right now and I don't experience any side effects (knock on wood). My white blood cell count is right where my doctor wants it. A lot of times though, I feel like it doesn't do much so I have not been taking it much, but I'm also having a bleeding problems right now. It's been fine for me and if you can't swallow pills, chewing them doesn't taste bad.
Hi thanks for the reply. It's good to hear from people that are on this. What bleeding problems are you having at the moment? Is it a result of the medication?
Have you recently started this medication then? I'm guessing that you have regular checks in that 4 months while you're waiting to see if it's working?
Hi, I have UC and have been on azathioprine for 4 years. My ankles and feet did swell up when I first started them but it only lasted 2 weeks and I have had no further problems.. I have to take 4 a day and 4 Pentasa a day. Touch wood my colitus has been under control for the four years. I have got to see my Consultant in January and I have got to make up my mind whether I stay on Azathioprine. He only wants me on them for a maximum of 5 years. I am not sure what to do. Good luck with your decision.
Thanks for replying. Thats a lot of tablets. do you have colitis bad? Why a maximum of 5 yrs? Is that because of the side effects? My crohns has been fairly mild until recently, consultant said my tablets aren't helping in certain areas that's why he suggested the azathioprine. I'm still torn about what to do. Having a bad night at the moment. Severe pains in side and I've just broken down in front of husband. We haven't really talked about the medication so he didn't know how worried I am about it. Luckily he's very supportive. Good luck with your own medication decision.
No, it's not from the medication. If anything, it's because I stopped taking it for a while. I believe it was just an internal hemorrhoid, which I have had before
My consultant said that 5 years would be long enough without having possible problems. I have had blood tests done every three months to check kidney functions and blood levels etc. and all has been well with the results. As he said everyone is completely different and what suits some people doesn't suit others. This has been proved in my case as my younger brother suffers with the same condition but has been worse than I have been and the tablets he takes are different to me. What you must appreciate is that no two people are the same. What you must do is take note of when things flair up, go over your diet etc. and see if you can find something that is starting it up. Also, although my Consultant doesn't think it is stress related, I seriously think that there is a link. My brother's Consultant tells him that he is sure that some of it is stress related, so even Consultants differ in their thoughts. I have learnt, along with my brother, that you monitor yourself and come to some of your own conclusions. There is just not enough known of this illness and that is why I am glad so many entertainers are raising money to look into this illness more. I am glad your husband is understanding, it is an embarrassing illness. I had only known my now husband for a year when I was diagnosed but he has been with me all the time. He is going to see my consultant with me when I make the decision about the Azathioprine as he always thinks of the right questions. Once you get your medication right you should feel alot better. Good luck with your medication.
Hi, have been on meds since March of this year.
Yes I completely agree it doesn't work for everyone. I've recently found out that the wife of my 2nd cousin has crohns and is on azathioprine. My nan was happy when she was told it was the best decision she'd ever made. My nan told her all about me and how I was having trouble and has arranged for us to have a chat. I'm glad that my nan is taking an interest and trying to learn more about this disease but as I said to her, everyone is different and I'm the one that will have to suffer any possible side effects. Talking to people like yourself that are taking the drug or going through the same emotions, decisions though does help. Thanks for that. And good luck.
Stick with it Kelaimee. My brother was in a terrible place last year and lost his job over it. Now he has got different tablets and also where he lost his job has done him a favour. He has got a job now with less stress although a drop in money but his health has improved, touch wood. Once I got on the right medication, I have not looked back but it does take alot of patience, understanding and unfortunately suffering to get into the position of knowing what medication is right for you. !! Head Up. x
I've been on azathioprine for 20 years and best thing I ever did. My consultant recommended stopping it in 2010 as had been on it for 15yrs and in constant remission for 5 yrs. Worst thing I ever did. Had my worst ever flare and they put me on Humira and azathioprine. They added Humira as well because azathioprine takes up to 4 mths to get working in your system as it is a very old style immunosuppressant. Only took 3 doses on the Humira and it led to me developing SLE Lupus which is permanent. Thankfully the treatment for the Lupus is same as Crohn's and so have stuck with just the azathioprine. Which I will carry on taking for rest of my life.
Thanks for that stickinsect. Not sure what's going to happen at moment. Had flare up couple of weeks ago and started getting pains in chest, being sick and head and legs going wobbly. Ended up in a&e. Symptoms are similar to pain I had with gallstones but had gallbladder removed several years ago. Had scan but apparently it's all clear. Seeing gastro consultant tomorrow so will see what he says. Not sure they can start new medication until they know what's causing the pain and sickness. Thanks for your reply though as it helps knowing that the medication has helped and for a long period of time too. I had heard that doctors didn't recommend taking it for more than 5 years.
Hi, I am interested in you saying you have been on Azathioprine for 20 years. I have been on it for nearly 5 years and my consultant wants me to come off when I see him in January although I have got to make up my own mind.!!! Reading your comment I am now worried if I should come off as I have not had any flare ups in the 5 years I have been on them.!!! I have asked my Consultant what he would suggest and all he says is its 'Up to Me'. Very helpful !!!
Yes, I know what you mean. Trouble is, no one can say whether you will stay in remission or not after you stop it. Only you can weigh up your options and the risks. In my case I have such little bowel left (1.5m) after 8 surgeries that I can't afford to have any more flare ups, as the tiny amount of bowel I have left is in really bad shape already.
Unfortunately, this is the nature of Crohn's. Most of the time the decision is up to you. Do your research and find out facts for yourself. You can always say you want to have more time to make up your mind. No decision you make in January is set in stone. You can always change your mind.
The only thing I would say is be careful not to go without any sort of medication as even if scopes,scans etc are clear - Crohn's tends to hide in a microscopic level and can bubble away unnoticed for ages before anything shows up of tests.