Newbie with 8 year daughter with ibd

[farfalle5]

Hello I am new to this group, my daughter was diagnosed in January with crohns disease. She has a flare up right now and is on steroids to treat it. Her dr was talking about maybe putting her on 6mp have any of you heard of this or tried it?
So happy I found this group talk soon!

 

[Jmrogers4]

Haven't done the 6mp but I'm sure somebody will come along shortly who has, we were on Imuran (azathioprine) for quite a few years which I believe is similar to 6mp. Jack felt great while on it and it really made a difference.
My understanding is it is like Imuran it takes a little while to get to theraputic levels and the steriod (we were on prednisone) help tackle the inflammation while the 6mp has a chance to do it's work.
Welcome to the forum, it is a great place for answers, understanding and support.

 

[Jenn]

Welcome to the board and so sorry to hear about your daughter. We never did steroids, from what I understand, they are used for immediate, short-term relief, while waiting for another med to kick in. My son went on 6MP from the get-go, and off, and now is on it again. It helps but takes 3-6 months for full effect. My son is still learning to swallow pills, so I crush it and mix with applesauce. We had no side effects from it at all, but do need to do regular bloodwork monitoring.

 

[Farmwife]

Sorry to hear about your girl.
I hope the flare gets under control soon.
Hugs:hug:

 

[DustyKat]

Hi farfalle5 and :welcome:

I am so very sorry to hear about your daughter...:hug:

Was your daughter on any treatment between diagnosis and this current flare?

Where is her Crohn's located?

I hope she is responding well to the steroids and is feeling better. You will find 6mp and Imuran are common around the forum. Both of my children are on Imuran as a maintenance medication, it is the parent drug of 6mp, and they have had no issues with it.

As has already been mentioned, 6mp will take at least 3 months to become fully therapeutic so it is critical that treatment is commenced well prior to tapering off the steroids so it can take over where they leave off. Regular blood monitoring is also a necessity. Has your daughter had a TPMT blood test to see that she able to metabolise the drug normally?

Good luck and welcome aboard!

Dusty. xxx

 

[Mumof4]

Hi, I just wanted to say welcome to the forum. When my son was first diagnosed I found this place Godsend. Finding other parents who are going through the same thing or are further along the road from you is such a great help, their knowledge and support is so comforting.

My son was not on steroids as my GI prefers to use a liquid meal replacement which contains an anti inflammatory. It is called modulen and my son was on that until his azathioprine kicked in. 6mp is another similar drug which is used and there are plenty of people on here who will be able to advise on their experiences with it. I hope things improve and settle down for your daughter.

 

[my little penguin]

DS was dx last sept .
He started pentasa but was quickly switched to EEN and 6-mp.
The med takes about 3 months to get the blood levels therapeutic .
It also requires a lot of blood draws . Every two weeks at first then once a month.
It can cause liver issues which is why they watch the blood levels so closely .
DS was on it from nov 2011 to June 2012.
We had to cut back on dose more than once and add allopurinol .
In the end it just wasn't enough for DS and did not stop his disease progression.
It was working ( we found this out when we cut the dose to add allopurinol) a little bit.
The thing to remember unlike other disease this one takes a long time to heal even when you find the right meds.
Hugs.

 

[kimmidwife]

Hi welcome to the forum!
My daughter was on imuran for a very short time before we realized she was allergic to it. I advise you to look at the treatments part of the forum. ( go to the first page and down to treatments) it is a good place to get familiar with the different treatments used for Crohn's disease and then once you have read it please feel free to ask us questions we all love to help!

 

[Sascot]

Hi and welcome. My son is supposed to be going onto 6mp soon, although I am delaying it just now because he has been quite well. Don't know much about it apart from the fact it needs alot of monitoring to start with. Good luck with it when she starts.

 

[dodie74]

Hi, my 9 year old son has been on 6mp for 2 and half years and up til now he has has had no problems on it at all, there is alot of bloodwork at the beginning, weekly to start with then fortnightly and so on. I tend to give kian his 6mp at bedtime as someone on here had said its the best time as sometimes the 6mp can cause them to feel a bit sick but Kian hasnt had that at all. It is scary reading all about the drug but its made a difference to my sons life and thats what matters. they will keep a close eye on yr little one and monitor him closely. I hope it works for him, good luck and keep us posted. xx