Thanks Njb and Olivia for your feedback. Surgery at this stage has been ruled out, even though we are also dealing with a weakness in the abdominal wall from a small hernia which is causing a portion of the small intestine to periodically "bulge". The surgeon we are under will not touch him unless he is in remission, and the explanation given for trying to resect a bowel whilst in a state of chronic inflammation seems reasonable. We are back to the specialist ths afternoon as 10 days on Aza has not gone well. A dosage increase from 50 to 75mg has seen urination become painful and difficulties with breathing. Urination frequency has also increased markedly, although I am told this is NOT a side effect of Aza. We seem to be making slow-to-no progress forward, with my son only havng attended 3 full days of school so far this term. He is either suffering from Crohn's side effects or drug side effects, and both are so chronic it is hard to differentiate one from the other at times. Thank you for your support and feedback. It is much appreciated.

Hi Olivia.
How did you do on 50mg Aza, were you on that dose for long? I was on 150 for three years, went down to 100 6 months ago and would love to drop to 50 but specialist says if I do I may as well stop and doesn't support the dose as a maintenance. Are other docs saying different?
Also great to hear people having babies on meds and with IBD.
Many thanks, JJ

i've had 2 surgeries so far. first when i was 15 then again at 21. both times were because i had complete bowel blockages and ended up in hospital every week.

jj - i've been on aza for song long its hard to remember all the details. i definitely started on 50mg about 8-10 years ago. was on it for a couple of years before being put up to 100mg. but then my liver became enlarged so dropped me back down to 50mg. I was on 50mg when pregnant 3 years ago.
but i still continue to have bowel issues and a constant problem with fistulas so have been bumped up to 200mg now. probly has to do with my weight and constant blood tests show that my aza levels were quite low.
thats interesting that your dr doesnt support it as a maintenance.

after my surgery at age 15 i wasn't put on any meds at all and when i needed my 2nd surgery the specialist in wellington was surprised that i wasn't at least put on Pentasa and he thinks my 2nd surgery could've been avoided had i been on a maintenance dose.

has anyone been on Entocourt?
now that was my miracle drug quite a few years ago! but at the time i was only allowed to be on it for 6 months as they found it had no better results if you were on it for longer.

Never been on Entacourt Olivia.

Was going to say that my specialist has been ok about me being on 50mg of 6mp (mercaptopurine/puri-nethol) as a maintenance dose. Its basically the same as aza.

Im sure once I have bubs they will probably bump it back up again tho

Olivia Interesting what you say about yr AZA levels being too low on maintenance. I too have been on AZA for years 100mg/day and needed 2 surgerys, (3 soon) while on it. They also found my thiporine level low but when I increased AZA to 150mg level went even lower. So my AZa levels were never at the therapuetic leve.
See my burbled mess under humira thread
yes tried the Entacourt to did noting for me.

Thanks Olivia,
I have an appointment just came through for July so I shall discuss dropping the dose to 50mg since I seem so well. I know it goes by weight too.
Roscoe I think the doses do vary betw Aza and 6MP - prob Aza has to be more than 6mp cos of body making it.
It's interesting to know people are on lower doses of these drugs though.

HI all. Having said initially my son was doing o.k on Azathiaprine and nausea was settling, it has ramped up again to the point he has been unable to eat for 48 hours and vomits anything he eats. Bloods are o.k. It is difficult to know if this is a direct result of the resriction in his terminal ileum (which is causing a significant abdomianl external bulging higher up in his small intestine around an area he had a hernia in as a samll boy)or if it is the Aza. Specialist has said to trial knocking off the Aza. Apparently we should know within 2-3 days if this is the problem, for if it is, the nausea should settle. Ileo-caeacal surgery booked, one month today.

Azathiaprine 100mg daily (was taking once dialy, trialled 50mg morning and night but made no difference to nausea)

Hows your son since stopping the Aza Camon?

Yes Roscoe he has. It hasn't made any difference to the nausea, so...bummer ! Surgery 3 weeks today. At least we have had no more vomiting, but weight is dropping due to lack of appetite due to nausea...round and round the houses....

Gosh Camon, Im so sorry to hear that! I wish you guys the best of luck with his up coming surgery & hope it brings him such much needed relief

I am new to forums in general and have just been diagnosed with moderately servere ulcerative colitis they want to put me on azathioprine too but some enzyme is low in my imune system can anyone shed some light on this