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contemplating azathioprine

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Ulcerative Colitis
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Posted 2/20/2013 9:00 AM (GMT 0)
Hi

I have had UC for over ten years and been taking asacol for about 6 years which worked most of the time but the last year and a half I've been up and down. I was on steriods once in the last year and tried various restrictive diets like gluten free, sugar free etc. But I still get blood and diarrea every once in a while, usually because I get fed up with the diet and have a chocolate bar or crisps or wine.

I am sick and tired of eating what to me seems like an unhealthly diet and also not being able to eat the good stuff! I eat hardly any fruit and the only vegetable I have are carrots, green beans and sometimes spinach.

Ive been contemplating azathioprine but I scared to try a different type of drug and also i know you can't breast feed with this drug. I recently had a miscarriage and with the antibiotics and being sad I am now flaring. I think I want to try for another baby and if I did I want to breastfeed. I don't really know what I want to know by posting this just if anybody is in this situation or are taking the drug. It feels like a big step to go from Asocol to Azathioprine. Also would I be able to eat what I want more with this drug? I want to eat more things like salad, berries, and stir frys!

Thanks.
Posted 2/20/2013 12:14 PM (GMT 0)
I don't know much about having children and these medication but I think if I were thinking about a child, Ideally, I would try to do it prior to starting Aza. In my experience, 6mp has been a lifesaver. I had been dealing with the ups and downs of UC for way too long and I finally have some stability. I was never a person who saw any positive benefit from altering my diet so that was not an option for me. I have had a few near-flares while on 6mp but I don't get as nervous because a "flare" is mild symptoms for a few days. I hope things continue as they are. UC has become secondary for me, I don't worry about bathrooms, I usually go once in the morning and it's normal. I eat whatever I want... I have a friend who had very stubborn proctitis and after having a child, her proctitis has become much more manageable. You never know...
Posted 2/20/2013 1:20 PM (GMT 0)
Sounds like your symptoms aren't really so bad. The diets you referred to can help some people but, are you actually 100% sure that they were helping you? It is my belief that many go on these very restrictive diets and the benefits are more in their head than in reality. What exactly are your symptoms right now? I have formed stools with no blood most all of the time but continue to have frequency and urgency. I have never done prednisone, the immunemodulators (like Azathioprine), or biologics. I would rather be the way I am than take the chances of the more serious side effects of all of these meds. Sometimes I think patients and doctors both get too obsessed with remission that they take unnecessary risks.
Posted 2/20/2013 1:29 PM (GMT 0)
I started 6mp (an immunosuppressant similar to azathioprine) about 4 weeks ago, and I have a few more weeks until it kicks in fully. I have seen zero side effects at 50mg a day. I was a little worried about taking this medication at first as some of the side effects are scary (but albeit quite rare). However, I got over it when I started looking at the rate of incidence of those side effects and you have a better chance of dying in a car accident than getting leukemia based on taking azathioprine/6mp if you look at the statistics behind it. And early on, your bloodwork is monitored closely to make sure everything is safe.

I think if you are having a lot of ups and downs with your uc then azathioprine is worth some serious consideration, as it might improve your quality of life and make things more stable for you. If nothing else you could always give it a try for a couple months and if you see no improvement through it then you can certainly stop taking aza and take only your prior medications.
Posted 2/20/2013 1:44 PM (GMT 0)
puddleduck,

Just wanted to mention that LDN, low dose naltrexone is perfectly safe for pregnancy and breastfeeding.

Posted 2/20/2013 5:14 PM (GMT 0)
Here's some info from CCFA about pregnancy and IBD, including risk levels for various medications: http://www.ccfa.org/resources/pregnancy-and-ibd.html

Recent studies and meta-analysis of grouped studies show that azathioprine is relatively safe. I personally would recommend an increase of folate consumption if you're taking it and plan on becoming pregnant. It is secreted in breast milk, though, so that's a concern. It IS considered safer than corticosteroids. Another option for you might be the TNF-a blockers, which are not secreted in breast milk and only cross the placenta late in pregnancy. That said, it's a decision up to you and your doctor, so talk to them about it.

I wish you a fast conception, easy pregnancy and healthy baby!
Posted 2/20/2013 8:45 PM (GMT 0)
Thanks for all the replies.

Notsosicklygirl: being able to eat what you want sounds great! I have one child already and for almost 4 years afterwards I was in pretty good shape then we decided to try for another and it all went down hill from there. I think I am leaning towards waiting until after we have another child if we are lucky enough. Just fed up with having to be careful of what i eat all the time.

Garylouisville: No my symptoms aren't really all that bad compared to some people here on the forum. At the moment, I have had diarrea for about 4 days and today I had blood. Massive gurgling noises that are really embarrassing, but I'm only going maybe 2-3 times a day. This morning I started on the coliform and tonight I will do the Asocol enema. Before this I was doing ok, being pregnant makes be better. But now that my hormones are going back to normal, and being sad and the fact that I've been drinking a lot of wine and eating stuff I wouldn't normally eat has all come together to cause me to flare up. Before I got pregnant I tried a gluten free dairy free diet and it did keep me off the steriods but I had to be so strict and whenever I cheated I would get D and sometimes blood. I just got sick of it in the end and went back to eating bread. So I don't really know if the diet worked for me. Certainly being bland helped me stay off steriods but I was so utterly bored of eating boring food.

ipoop: i'm glad you aren't having any side effects.
insofa: I dont' know anything about LDN but Ill look it up
Malkavian: Thanks for that link that was really informative! And thank you for the best wishes.

I just wonder how bad you should be before taking azathioprine....
Posted 2/20/2013 8:49 PM (GMT 0)
If you think your quality of life is suffering due to the disease and your current meds are not sufficient to control it, IMO that's reason enough to take it.
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