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4 years and no remission - hope is out there right?

E

electrichead

Had symptoms of Crohns since december 2009, havent gone into remission yet, officially diagnosed August 2012 after colonoscopy. Budesonide and pentasa (mesalazine) havent worked, currently trying azathioprine, NOT NICE DRUG AT ALL! Any tips for avoiding sickness with this treatment? Already pretty under-weight but this kills my appetite.
Just turned 19, from Northern Ireland, UK
 
Johnnysmom

Johnnysmom

There are lots of drugs for you left to try so yes, I think remission is very possible for you.

When my son first started 6mp (similar to azathioprine) he didn't feel well at all. It takes a while for your body to adjust (2 weeks for him). Also they had him on way too high of a dose. They started him at 50mg and moved to 75 a week later. After months of adjusting he now takes 25mg a day. I don't know how long you have taken it but I would give it more time and talk to your Dr. they may want to adjust your dose if it is making you feel unwell.

(((((Hugs))))))
 
A

abic

I started AZA about two months ago. My GI moved me from 50mg to 150mg quite quickly and I ended up with really bad nausea and occassional vomiting. He stopped the azathioprine for one week and then reintroduced it slowly- with me increasing the dose by 50mg at about one week intervals. Now I'm on 150mg with very little nausea/feeling sick. You may want to talk to your GI about this approach. I've also found taking at night before I go to bed means I can sleep off some of the sick feelings. The nausea does subside after about four to six weeks. Its been very effective for me. Good luck with it. I hear it works very well for some people.
 
Devynnsmom

Devynnsmom

There is def hope, don't ever give up. How long have you been on the new drug? I know they can take some time to work. Your doctor may need to adjust your dosage. My 11 year old daughter has UC. She started out on Pentasa ASA and that worked wonderfully for about 18 mos. We did some adjusting in that 18 mos, but it was just upping the dosage as she grew. Then we had a death in the family and she went into a flare. We switched to Mezavant which never worked. She was switched to Sulfasalazine in Nov and it seems to be working well.
Good luck, I hope your doctor can find something to make you feel better real soon. It is awful having to suffer :( (((((hugs)))
 
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electrichead

Thanks for the encouragement guys, to Johnnysmom I thought there was mmore medications to try but my GI told me the only options they really consider would be what I have already tried and if the AZA doesn't work then I'll be put on infliximab! I'm on 100mg of aza per day and have been on it nearly a month.
CRP has dropped from 38.6 to 22.9 so things are on the up!
 
A

abic

It shouldn't be long now until you start feeling less sick from the AZA. From what I've read (and know from my own experience) it takes about a month for the nausea to subside. Hang in there! I found that eating dry bread or crackers in the morning also helped with feelings of sickness.
 
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