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Worried about ds taking Azathioprine for Ulcerative Colitis - any experiences or advice please

(68 Posts)

My 18 year old ds is suffering with his first ever bout of inflammatory bowel disease which looks like it is Ulcerative Colitis but could be Crohns - we are still awaiting a final diagnosis. He was in hospital for 10 days on IV hydrocortisone, antibiotics and Asacol and has now been home for a week on Prednisone and Asacol.

The consultant told him whilst he was in hospital that Azathioprine was the next step for him and we have an appointment to discuss this further tomorrow evening. I feel very concerned about him taking Azathioprine because of the potential side effects and wonder if anyone could tell me of their experiences of being on it.

I am particularly worried about the increased risks of infections as he is due to go to University in September and will be far from home and exposed to lots of bugs and things. Also the increased risk of cancer is concerning. Any help or advice would be gratefully received as I am feeling a bit overwhelmed by it all.

plus3 Wed 06-Jun-12 19:53:52

Hello I am on azathioprine as I was one of the 3% of people who symptoms were excebated by Asacol. I have UC.

I have been completely stable on it - regular blood tests are the only downside, and I am careful in the sun, but other than that it has been wonderful. It took about 3 Mths for me to really feel well on it, but was very ill on starting it. I have been well on it - the cancer aspect is concerning, but I felt I wasn't in a position to continue with the colitis. It was limiting my ability to parent, so I felt I almost had no choice but to take the azathioprine.

IBD is a hideous illness, and I wish you son well.

Thanks for the reply plus3. It is reassuring to hear that you are generally well on Azathioprine. Have you had no problems with extra susceptibility to infections ?
As this is his first bout we don't know what the course of his illness will be and if, as you have found, that we knew that things couldn't be controlled with Asacol it would be easier to make a decision to accept the extra side effects and try Azathioprine at this stage. The consultant seems to be pushing it quite hard though so must have his reasons.
An added difficulty we have is that the consultant is not very willing to answer questions so we may need to try and find a second opinion from someone more receptive I think.

plus3 Wed 06-Jun-12 20:57:23

With regards to infections, I had a run of cold sores at the beginning (which I was convinced would be permenent!) colds seem to be a bit heavier, and I had proper flu which convinced me to have the flu vaccine every year. Since then I can honestly say I don't feel immunocompromised.

The first fare up is often the most serious. My consultant pushed and pushed me on the Asacol and it's derivatives (probably because of the side effects of azathioprine ) but they were completely toxic for me. I like my consultant, but he can be quite dismissive of my input to my own health....I originally thought I was a coeliac and was investigated accordingly , but still feel that gluten is something that my body cannot tolerate. His opinion is that I can cut it out if I like, but food doesn't cause UC. I recognise that, but I push quite hard to have a discussion about my condition, and have become well informed about my condition.

I know that it is good advice not to hit the Internet too hard following a diagnosis, but the website is very useful.

Perhaps it is a gastroenterologist thing as 'dismissive of my input to my own health' sums up the attitude of ds's consultant too ! He doesn't want any interference to the extent that he asks dh and I to leave the room when he is with ds, which we don't comply with as ds tells him he feels he needs our input and support, so seeing him is always difficult before we even begin to try and ask any questions. It doesn't help us deal with what is a stressful situation nor give us much confidence that he will be very informative about Azathioprine as opposed to other potential treatment options.

Thanks for the website link. I am finding researching on the net very difficult as there is lots of scary stuff out there - I am hoping it is because those people who have their symptoms well controlled don't post so much about it.
Thanks

plus3 Wed 06-Jun-12 22:20:31

I think you are right - the scary stories are the ones people need to talk about!

4 years ago I truly believed I would never be better, that my life (and that of my DC) would be limited to a certain radius of a loo and I

I approach my appointments now with very definite questions that I want answering - more recently it has been the lenght of time I can safely stay on the azathioprine (which seems to depend on my blood results, and whether I want any more children).

If your DS is requesting that you stay for his appointment, then the consultant should honour that.

Good luck

AnyoneforTurps Wed 06-Jun-12 22:24:58

I'm afraid that all treatments for IBD work by suppressing the immune system in one way or the other. As long as your DS is aware of the risk of infection, he should be absolutely fine. I have lots of patients on azathioprine who do very well on it.

Sorry that your consultant is unhelpful. Do they have a specialist nurse who could to talk to you in more detail?

Thanks plus3.

Thanks AnyoneforTurps.Yes there is a specialist nurse and she was very informative but in more general terms as she couldn't tell us much about our ds's particular situation as that, apparently has to come from the consultant. Pleased to hear a another report of people doing well on Azathioprine as on paper it seems quite scary.

WowOoo Thu 07-Jun-12 18:04:01

My dh is on it and is absolutely fine.
He was quite worried at first after having read the warnings in the packet, but even though we've had awful colds and viruses he has been OK. In fact, i'd say his immune system is better than mine.
He is also much better - he had Uc and his symptoms are mostly gone now. but he gets a flare up from time to time.
Hope this helps and that he feels better soon. What a stressful thing for him.

I was on Azathioprine for a few months after being diagnosed with Crohn's in February but my consultant recently changed me to Mercaptopurine because my hair was thinning & breaking off - one of the more unfortunate side effects. Apart from the hair & raging mouth ulcers at first I had no other problems. I've had one cold since March & generally I feel really well.

If you need any info on IBD, medications, diet etc try the NACC website - their leaflets are really good & I got loads of info from them.

Hope your son feels better soon.

Sorry forgot to say that my consultant and the IBD nurse have both recommended that I have a flu vaccine every year & this year I will be having a pneumonia vaccine. They have said that this is a precaution they always recommend to patients on immuno-suppressants.

breadandbutterfly Fri 08-Jun-12 14:57:44

Hi winetime, repied to your PM but it went weird so don't know if you got it. having a consultant who won't even let you stay in the room when talking to your ds doesn't sound very comforting for either of you... As I wrote, once your son is up to it I would look at alternatives - whatever the consultant might say there are alternatives to v strong drugs - and diet and lifestyle definitely play a massive part in colitis.

Good luck.

casskittens Fri 08-Jun-12 16:46:07

Hi, saw this and thought I would let you know my DH's experience of both asacol and azathioprine.

He has UC and was diagnosed as a teenager, her has been taking both for around 14 years and they have greatly improved his quality of life.

In the time we have been together he has only had 2-3 bad flare ups which have required steriod treatment (usually several weeks) but his consultant has advised without having been on both drugs his condition would be a lot, lot worse. My DH was around the same age as your DS when first unwell and diagnosed, he unfortunately had to miss uni but that was because he was due to start at the same time he was ill iyswim.

He has very regular monnitoring and is under the care of a very good consultant. What area are you in? You may be able to request a referral.

If you like have any more detailed questions I would be happy to ask him.

casskittens Fri 08-Jun-12 16:47:02

I should say, to put the flare ups in context, that we have been together around 10 years.

funnyperson Fri 08-Jun-12 19:53:30

Why would a specialist nurse talk in more detail than a consultant? I dont get it. Its a consultants job to ascertain the detail.

funnyperson Fri 08-Jun-12 20:04:55

I think its possible that your DS may not want to talk about enemas and so forth in front of his parents and it is thought to be good practice for a consultant to at least offer to consult with a person over 18 without their parents present. Ultimately it is your DS decision, informed by his consultant, (not your decision), as to whether he goes on the azathioprine.(unless DS has learning difficulties)
Here is what the NACC say about azathioprine.
www.nacc.org.uk/downloads/factsheets/drugAzathioprine6MP.pdf

casskittens Sat 09-Jun-12 09:34:25

wine I should say also that he tried food eliminations, intolerence testing and diet changes, for him they actually made no difference.

He would have been fine to attend uni by a year later. I had a quick chat with him this morning and he has explained his consultant is one of the leading in UK. If you would like to PM me I can give you more details about name, location etc.

He has a flu jab every year and his general health is pretty good in spite of the immunosupressant. He has blood tests every 2 months to monitor.

Please try not to worry too much, hopefully soon they will be able to get things under control and manage his symptoms well.

AnyoneforTurps Sat 09-Jun-12 18:20:10

Please don't try food eliminations without specialist advice. People with IBD are prone to certain types of malnutrition as it is (more of a problem with Crohn's but can happen with UC). The last thing you want is to make this worse. At 18, his body is still developing and he needs a balanced diet.

UC is an auto-immune reaction, not an allergic one, and food elimination will not help it. People with IBD can also have IBS or coeliac (though they are totally separate conditions) and food eliminations can help IBS/coeliac but should be treated with great caution especially in someone as young as your DS. By all means try adjusting his diet e.g. more/less wheat or dairy but don't cut out food groups completely without medical advice.

funnyperson Sat 09-Jun-12 18:32:43

I thought the cause of UC is not really known and it is possible to get a secondary lactose or wheat intolerance during and after a flare up. anyoneforturps I diagnose young doctor far too ready to pontificate.

AnyoneforTurps Sat 09-Jun-12 18:43:44

funnyperson I diagnose young doctor far too ready to pontificate.

If only - I'm an old(ish) doctor with a particular interest in IBD as my mother has UC. And management of lactose intolerance is a research interest of mine.

As I mentioned, people with IBD can of course have additional conditions that will be helped by food elimination or - more likely - dietary manipulation. But there is a real risk of doing more harm than good, especially in an 18 year old.

I would be particularly concerned about a reduced calcium intake, given the increased risk of osteoporosis with IBD. Of course you don't need dairy food to get enough calcium but not all 18 year old boys are reliable consumers of leafy green veg wink. And lactose intolerance in this situation is (a) a lot less common than transient cows' milk protein intolerance (a totally different condition) and (b) would in any case be a relative, not complete intolerance so you don't need total elimination of lactose.

If you read my posting, you'll notice that I am not saying "don't try food eliminations", only "don't try them without specialist advice".

funnyperson Sat 09-Jun-12 18:48:06

Oldish doctor far too ready to pontificate. Every person is an individual.

funnyperson Sat 09-Jun-12 18:53:28

See p 12 of this
www.nacc.org.uk/downloads/booklets/FoodAndIBD.pdf

if you think it is wrong, and you are senior enough, contact NACC and offer to be on their committee.

AnyoneforTurps Sat 09-Jun-12 19:02:06

Fine, have it your own way - hopefully the OP will see that I am trying to protect her DS from future problems by being cautious with diet. Not sure what your agenda is.

I'm well aware of the NACC guidance. In fact, you'll see that it tallies with what I have said about the risks of dietary deficiencies, especially osteoporosis from reduced intake of dairy products, and it also advises that you should talk to your IBD team about diet before making major changes.

So pretty much exactly what I said.

30ish Sat 09-Jun-12 19:09:50

I started taking azathioprine 8 weeks ago for auto immune hepatitis. I was absolutely terrified about the side effects & still am! My bloods have shown a massive improvement recently. My consultant said the the benefits far outweigh the dangers as the risks are slight. I felt very tired when I first started to take azathioprine but now I feel fine! It does cause
Me to have very bright urine a few hours after taking it though! Hope your sons condition improves.

funnyperson Sat 09-Jun-12 19:23:51

anyoneforturps it isnt what you said because it points out that lactose intolerance is common in flare ups.

I dont have an agenda. I do have UC. I get lactose intolerant and wheat intolerant when I have a flare up. Azathioprine didn't suit me. Thats just my experience. No agenda at all.

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