Azathioprine worries!

Bones, joints and muscles
1

Hello! I was recently admitted to hospital after visiting my GP with persistant stomach pain (about 2 months on and off) and to cut a long story short, a CT scan showed an inflamed bowel which I was told was most likely down to Crohns diesese. I ened up having a small section of bowel removed by the surgeon, and am now back to normal - e.g. no pain or discomfort what so ever, eating and drinking normally, normal bowel movements... in fact you'd never know I had been ill! 

Now on a follow up at the hospital I have been prescribed Azathioprine tablets. I was given a 30 minute pep-talk by a pharmacist explaining the drug, which if I'm honest terrified me. Risk of cancer, nausea, feeling unwell, reduced bone marrow etc... In fact, lots of very unpleasant side effects. Basically, I feel great right now; 100%, and it sounds like these tablets will make me feel 'not great.' I want to talk to the consultant before I start taking them, but cant get appt until April.

From reading posts on the forum, and some general research, it sounds like Azathioprine is used to control inflamation during flare ups, or treat chronic Crohns that is affecting quality of life? Yet I have no symptoms, no pain or discomfort, and feel great. I appreciate that Azathioprine can also be used to prevent Crohns from coming back again, but with all the associated risks, and I gather you can only take it for a total of around five years before it stops working, is now the right time for me to be starting this drug? Should it not be held in reserve in case I have problems in the future?

Yes, I will be guided by my doctor, but until I can get to see him, I just wanted to get some feedback from anyone else on here using Azathioprine. Has anyone been in my position and started taking it? Sorry if I sound like an idiot - I'm feeling very confused and a little concerned about this drug. Do I really want to take something that will make me feel worse than I do now, and possibly even give me cancer? Any feedback greatfully received!   

2

You don't sound like an idiot at all and you're right to be concerned. It's a serious drug and not to be taken lightly. I too am on the verge of starting a similar drug, Mercaptopurine as I can't take Azathiaprine. I have managed for twenty years without these drugs using a liquid diet to manage flares. I have had three resections in that time and during all this time the Consultants have wanted me on these drugs.

I thought I'd try Mercaptopurine to see if I could avoid surgery down the line but everything is telling me NOT to. At least over the years I have maintained a level of fitness and well being that has assisted my recovery from surgeries!!

You have to trust your own gut instinct ( no pun intended!) and weigh up the pros and cons for you. It's difficult saying no to the edics without putting them off side. If you do say no, keep an open mind to alternative ways to manage your condition as and when it reappears..... If you're feeling good and your body is behaving why disrupt it??!!

Good luck

3

Thanks Hannah! I guess I feel bad for even questioning the Doctor's recommendations and I might be in a better position had it been thoroughly explained to me. But I have been home for nearly a month now and have yet to see any of the Doctors involved in my treatment.

I do feel fine right now, and reading about some other people's experiences of taking this drug on this forum hasn't made me feel any happier about taking it. The docs said I must have had Crohns for "several years" yet I never had any symptoms until late last year. Maybe I will have the same good fortune again...I simply don't know, but taking something that will almost certainly make me feel worse than I do right now just seems bizarre unless there are major benefits ("Take these or you will die!" or something like that!)

The info on the Crohns & Colitis UK website on this drugs says: "You may be given azathioprine or mercaptopurine if you have Ulcerative Colitis (UC) or Crohn’s Disease and you keep getting relapses while being treated with 5ASA drugs (such as mesalazine) and/or steroids. You may also be prescribed azathioprine or mercaptopurine to help you reduce or come off steroids without getting another flare-up."

I have not had a relapse, nor have I been on steroids, and I have not had any flare-ups, but admittedly, it's early days yet, but my medication does seem at odds with the info on the C&CUK website.

Still very confused, but glad there are people like you Hannah who can share their experiences, so thanks again! :-)

 

4

You're welcome and welcome to a world of confusion!!!

Just trust your body and your intelligence. The Docs don't have to live with their drug therapies.... We do. And whilst some of the drugs can save your life, the long term therapies offer no guarantees and more often than not decrease overall wellness!!

Like I said.... Welcome to a world of confusion.

5

Hi Skydriver, sounds to me that you have made up your mind about Azathioprine like you I was reluctant to start this drug but gave it a go and felt bloody awful, had loads of side effects and it took my liver levels sky high, just 3 days after I had stopped the drug my levels had gone down to almost normal, it took me nearly five weeks to get back to feeling ok. I have told my consultant that I will not take any immunosuppressant of course he was not happy about that but like you I can not see the point of taking something that makes you feel worse. Try and speak to your GP see if it helps. Good luck

6

Hi Barbara, thanks for your reply. Believe it or not I haven't actually made my mind up yet, as there may be some compelling reason that the docs are aware of as to why I should take them. I guess my case can be down to poor communication as much as anything, but obviously, from doing my own reseach (in absense of any official guidance) everything I read (including your own experience) doesn't exactly fill me with confidence in Azathioprine!

If I felt really sick, or had been ill for a long time, it would be worth a punt, but as I feel fine right now, I hope the docs can come up with a really compelling case for taking it.

I also gather that Azathioprine only works for around five years? What happens after that if it stops working? Am I mad for thinking that it would be better to keep this drug in reserve in case I REALLY need it further down the line? I am no doctor, but that just kinda makes sense to me.

I just don't know. I guess I will only get a better idea when I have spoken to the docs, but they want me to start taking the drug now, but can't see me until April! :-( 

7

Hi Skydriver,

So glad to have found this site, especially this  discussion, my husband and I feel the same as you about Azathioprine which Dr has told hubby he must start asap. 

After a severe case of Colitis which  a course of Steroids and  Infliximab infusions thankfully sorted my husband out, he is now feeling close to normal again , we are very scared of starting with this drug due to the horrible side effects and asking ourselves why take it if it means becoming ill again from these side effects , we are in such a dilemma, please let us know what you decide and how this drug works for you if you decide to take it. Many thanks!!!! Stay well 

8

Hi Sue

I am still pretty much in limbo as I still haven't seen a doctor. The tablets are still sitting here unopened...and I still feel fine! I am still undecided but can't really make an informed decision until I have spoken to the docs. As I said, they might have a very compelling reason for wanting me to take them that they haven't made me aware of, but it's frustrating that I have got to wait so long before i can speak to anybody. I had my operation in January and the first time I get to see a doctor after it will be the last week of April. I guess until then I am just going to carry on as normal and see what happens. Are you in regular contact with your doctor? Have they done anything to address your concerns? Hoping you are having more luck than I currently am!

 

9

Hi I have uc and been quite ill since June last year.was put on mezaline and ended. Up in hospital with pancreatitis .feet swelled up ankles and legs.so that didn't suit.came home and was just told do salafalk enamas alone for 6weeks until he sees me again.well it was diareah for 6weeks feeling very ill .up every night going to loo 8 or 10 times.poo just like water.finely got to see him and he put me on axatheoprine .that was 2 weeks today and I have never felt better . Doing normal stools now .thank you god .it suits me up to now .try not worry .you have to try it to know .you can always come off it if it dosn't suit good luck .

10

Hi Barbara

It's so good to hear some positive news about Azathioprine.... And great that it's working for you.

I am about to embark on this treatment and have been really struggling with making a decision about it. You're right, you don't know until you try and if it doesn't work you can stop!!

Thanks for sharing your good news

11

I have vasculitis, a disease of the immune system, which has caused kidney damage.

My consultant has explained that there is no cure for vasculitis, so the aim is to control it and thus hopefully prevent further kidney damage.

Having completed treatment with chemotherapy and steroids, I went on to Azathioprine 150mg daily in late January.

In early February I had dizzy spells. Blood pressure checks showed this to be higher than normal, not lower as I would have expected. I therefore assumed the dizziness was caused by the Azathioprine, and on advice of the doctor at my local walk-in centre I stopped taking it.

By good fortune I had an appontment booked with my consultant within a couple of days. The routine tests for that appointment showed everything normal. He therefore advised me to resume the Azathioprine, but at 50mg rather than 150mg.

By the time of my next appointment two weeks later I had experienced no ill effects. He therefore increased the dose to 100mg for one week, and then (if no further problems) to 150mg.

I have now been taking the full 150mg for three weeks and feel 100%.

The consultant has now reduced my appointments to every eight weeks. However as the Azathioprine suppresses the immune system and thus increases vulnerability to infections, he has told me to e-mail him if I experience any significant problems and he will see me at his next weekly clinic.

I would add that in addition to the Azathioprine, I take stuff for coronary heart disease - i.e. beta-blocker, ACE inhibitor, calcium antagonist, statin,  anti-coagulant.

Hope this helps.

12

Hi – I was diagnosed with an auto immune red blood cell destroying disease last June and was prescribed the steroid Prednisolone. I was on 70mg a day of this for 3 months and then tapered off slowly before coming off it completely last December. I was then on nothing until I had a blood test in early January when it was found the auto immune disease was still there (I think they were hoping it would just go away as mysteriously as it had appeared).

They then decided to put me on 150mg/day of Azathioprine which I have been on since. I was also prescribed Prednisolone (50 mg/day) for 6 weeks as I was told it would take 4-6 weeks for the Azathioprine to ‘kick in’. I’m now tapering down the Prednisolone and currently on 10mg/day.

I was absolutely fine – apart from the normal steroid side effects such as water retention, weight gain, etc. – until a couple of weeks ago when I started to feel extremely nauseous from getting up in the morning until about mid-afternoon and occasionally stomach cramps.

I’m not sure if this is down to the steroid withdrawal effects (in which case hopefully they’ll go away eventually) or the Azathioprine. Has anyone else been getting these symptoms and does anyone have any advice?

13

Hi Tony, did you have the same side effects when you came off Prednisolone last time as you think it may be due to withdrawal if not I would suggest it could be the Azathioprine as I was really ill with them after only about 10 days, chronic stomach pains,fever,dizzy plus the most horrendous diarrhoea and sickness,my liver levels went sky high and after just 3 days of not taking them my level had dropped to normal. I am just taking Prednisolone 7.5mg daily along with Ursofalk for my AIH/PBC hope this helps. 

14

Hi Barbara - thanks for the response. I did have withdrawal symptoms from the Prednisolone last year but not nausea - main symptoms were tiredness and a bad back - that's why I was thinking it may be a reaction to the Azathioprine. Anyway, just been to see my consultant and he's prescribed Lansoprazole and Metoclopopramide ........... so yet more tablets :-(( but if they help, then so be it!

15

More tablets I know how you feel they just seem to pump us full of drugs, I too am on Lansoprazole to ease reflux due to Hiatus Hernia which are amazing I take one every other day which seems the ideal dose for me. Good luck hope all settles down for you. Keep taking the tablets! 💊

16

Thanks Barbara - you too x

17

Re the Crohns I have an autoimmune conditions which is what Crohns is-and there as many autoimmune diseases as you want to find, ranging from thyroid diabeties, tinnitis, autoimmune hepatitis, lupus and more- and have just read a book by an American Doctor. In this book he claims that all autoimmune diseases start in the gut, and this is because of WHEAT.

Now this sounds a bit strange as we are told to eat grains, but the modern varieties of wheat, that are hybridiized and following on, now have double the chromosones and sometimes are GMO as well, but the wheat product itself sbear no resemblance to the original grain. Our bodies can't tolerate it and the lining in the gut is affected and becomes porus and certain properties escape into the bloodstream.which in turn affects our organs and immune system that starts a cycle where we start attacking our own organs.

It appears that everyone assumed the modern grains, (that are grown for fuller heads, high gluten, and on shorter stalks,) as they appeared the same as the old wheat, were the same, and were not tested on humans. 

This book is well documented, has lots of references and is peer reviewed.

I don't know if this is any help to anyone out there, but it is an interesting read, and I got my copy from Amazon for about $20- I live in Oz.

I have stopped eating any bread made from wheat flour.  This is more than being gluten free, and I haven't missed it and have lost weight and feel good, apart from having to take the disgusting AZT as well.

I think we have to do our own research and find a good naturopath as well to work alongside the Drs.  

I am comfortable sharing this  info on a public forum (as I've just read the disclaimer!)as the more we know the better informed we are and can make our own decisions wisely.

I have read a lot more stuff too about autoimmune diseases, go on line and check  them all uut, there is a common thread, there must be or we wouldn't all be taking thes horrible medications, that make us feel like we've been poisoned. 

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18

Hi...

I'm absolutely petrified at the thought of taking this medication... There are so many side affects and I don't want to get more diseases through treating crohns disease... The thought of getting cancer makes me feel sick... I have two little boys that need their mummy.

My crohns is active as my sample inflammation levels came back at 458 but I am symptom free and feel 100%

How does anyone else feel on this medication? I'm due to start it soon but feeling rather doubtful.

Help please x

19

Hi everyone, Please try and find the info I wrote in a previous blog about the wheat and grain book. Also look up the Rosedale diet, which is a rather severe diet for autoimmune diseases, but ifyou follow all the links to this info you might find they work.  I can't name people or book titles in these blogs (don't know why as it should be an open forum, its not as if we are peddling snake oil!) , but I know of cases that have had chrones reversed.  In Australia we have  the Australian College of Nutritional and Enviromental medicine, which provides a course that some docs and health professionals can do and then they go out on their own and are really very good doctors with an interest in nutrition.  They claim that all autoimmune diseases start in the gut. So  PLEASE try and look some of this info up.

20

Crohns reversal sounds amazing, thanks Helen, I will definitely look into this diet xx