AZA not working as well as it was, advice please

[Jane and Nick]

Well my bubble is deflating slowly, after 4 weeks of zero symptoms and having a lovely healthy energetic boy, we are now seeing blood with each bm still only one or two BMs a day. He has some pain but only before a bm.

He is on 50mg of AZA and when we were on 75 his LFT shot up. I don't want him on a potentially dangerous drug (all drugs have dangers but AZA is particularly scary to me.) If it's not helping control his symptoms.

Question to my experienced mums and dads, how long did it take to play around with the amounts of AZA until you got it right ? Did anyone's LFT results become high then come back to normal without changing the dose ? And if it is failing to control the bleeding after just one month of being symptom free are we fighting a loosing battle.

We are still on holiday in the UK but leave next week for KL so not enough time to see a doctor here.

Just when you think it's safe to relax and enjoy some normality, it all comes crashing down. It's so tempting not to do anything as Nick says he's fine and can cope with a little blood, but I know better, but would like to stay in denial, where is the pump for my bubble?

 

[my little penguin]

DS had trouble with 6-mp 50 mg was not able to get to therapeutic levels and and 75 mg his LFT went through the roof-
WE tried adding allopurinol and drastically cut the dose of 6-mp.
this worked for a bit but the levels never got to therapeutic without raising LFTs again..

WE scoped at that time and Ds had mild chronic inflammation in various places so he started mtx plus pred.
That really didn't work either ( just another three months of waiting for it to work

Hope the docs can come up with a plan soon
If you have a week can you call the gi - ours will squeeze flaring IBD kids in within 24 hours if needed.

 

[Patricia56]

Sorry to hear your news.

Before you panic, you might want to see if adding an antibiotic (flagyl or cipro) would help. That has been a good solution for some people. Never worked for us but others have posted it helped their kids a lot.

Switching to Allopurinol and Imuran like MLP suggested is another strategy I've heard been used successfully by a lot of folks.

I've also seen reports of using milk thistle to help bring down LFT's but have no experience with that. You could check with your doctor about it.

Hope you can relax enough to enjoy your holiday and that things calm down on their own.

 

[Jmrogers4]

We messed with it for over 6 months before getting to the right allipurinol/Imuran mix.
Hope you get a quick solution and re-build that bubble.

 

[Maya142]

There are some kids who do better on 6MP - our GI said we'd start on Imuran and if that was a problem we'd try 6MP. And if that was problem we'd go back to Methotrexate!
Hang in there:ghug:!

 

[Mehita]

While on Aza, DS's liver numbers went up and down but the ups were never in the worry zone, just slightly elevated one month and back to normal the next. Have his numbers been ok on his current dose?

A boy who goes to school with DS and also has Crohn's has had success with adding Flagyl like Patricia mentioned.

I think you still have options... adding Allpurinol, Flagyl, switching to 6MP, maybe even a round of pred or EN?

:ghug:

 

[Sascot]

Sorry to hear your bubble is deflating. We moved from Aza to 6mp since my son couldn't tolerate it. So far 6mp is doing fine. Might be worth switching. We have used Flagyl, but more for an abscess than tummy issues. Hope things don't get any worse.

 

[Catherine]

It took us 21 months to get aza levels in range and 3 course of pred.

 

[SupportiveMom]

Sad to here about the Aza. Really hoping you find the right dosage soon. The fact that it did work is great. I think you started the Aza right before my daughter. How long has the blood been happening? Is it too early to push a change yet?

I'm not saying to do nothing, but maybe travel & new foods are causing a bit of bowel stress and it will all settle down soon?

 

[alex_chris]

It took me 4 years to find the right dosage of aza, I hope you guys figure it out sooner.

In any event, as you certainly know aza is just a drug that helps people with Crohn's, it is never the reason for why there is a flare up or problem, the right dosage is just a bit more effective than a slightly wrong dosage from suppressing a flare-up, but the flare up itself is cause by other things (stress, diet, lack of sport, lack of sleep, too much sleep etc.).

 

[Jane and Nick]

Thank you to all for the advice, sorry for the delay in replying, we are now back in Kuala Lumpur and the trip back seems to get longer each time we do it or my tolerance for long haul flying is less and less as each year goes past.

Your advice is spot on, I think the travel and change of routine may of had an effect on his body. I will ask about other options like allopurinol or MTX and the possibility of adding a flagyl, only issue here is that often we have limited drug options available due to the Malay government only offering licence to small amounts of drug company's and then limiting what they can offer. IBD is not common and specific drugs are hard to come by, if the drug is used for other illness then we have more chance of being able to get hold of it so the antibiotics should be no problem. We can always travel to Singapore if we need to try something else.

Nick is doing better and the visible blood has stopped and his bowls seem to be getting back to normal. We will see his GI for a blood test this week, we have gone 6 weeks without one due to travelling and the reassurance from the GI that it would be OK to wait till we got back. I think it was a small flare, and I hope things will get back in to a routine now we are home, 6 weeks of travel could well of messed up his system. We were able to do lots of exciting things like Harry Potter world and a lovely city break in London and he was able to participate and enjoy it all. 6 months ago he wouldn't of had the energy or the stamina so things are getting better.

Good news is that Nick has grown !!!!! He has shot up almost an inch in a month, amazing that we have been off the pred for 8 weeks and the growth is starting, he is very thrilled.

Thank you once again and I will let you know how we get on with the latest blood test, and ask about any other options that may be available.

 

[DustyKat]

Thanks for the update Jane. :ghug:

I too wouldn’t be surprised if the change of routine, climate and food may have been playing a factor in Nick’s problems, bless him. I so hope things continue to settle now he is home and how fab is the growth! Woohoo, something must be going right!

Good luck with tests!

Dusty. xxx

 

[kimmidwife]

Glad to hear the update and very glad you are home safe!