How long before you see any benefits from medication?

[catfan2]

Hi

My 14 year old daughter is currently on 60mg of mercaptopurine once a day and 1.2g of Mesalazine twice a day. If this medication will help (and I realise it's an 'if'), after how long should we see any improvement? She has started eating again and has had extremely loud noises coming from her tummy, and the pains are back :frown: . While she was exclusively on Modulen, it was fantastic, no pains at all. She says the pains are not as bad as they were before, but is still having them. She doesn't complain, she's such a good kid, so only tells me she has had a pain if I ask. I am keeping a diary of everything she eats, and have so far not been able to identify a trigger food. At her last appointment the paediatrician said that if the inflammation is still there and has not gone down as much as they hoped, she would have to start on infliximab (she has an MRI scan next week). Oh yes, and vitamins and iron as well.
I know the medication is to help her, but I feel so guilty giving her all these tablets to take. Does that sound odd? It's just that we don't know for sure if it will help, I'd feel much happier if I knew for definite it would improve things. It's all so confusing and I feel we're walking a tightrope much of the time. Hope I'm not waffling too much and you understand what I mean!

 

[Jenn]

Hi. Sorry to hear about your daugher. Mercaptopurine (6mp) can take up to 3-4 months for full effect, but her bloodwork should show some improvement in a few weeks.

Don't have much advice for the noisy tummy and pain, sorry. I have heard to avoid ibuprofen. And I know B vitamins can cause stomach upset, they make me nauseous.

Agreed, I don't like using such strong meds on our little ones, but untreated is far riskier.

 

[Tesscorm]

I'm sorry to hear that your daughter is still in pain So unfair after getting through the exclusive period of EN - certainly not easy to do!

I don't have any experience with the medications as my son's treatment has been EN only, however, just a suggestion... my son's maintenance has continued to be EN (at half dose plus regular diet) and while this maintenance treatment has not completely eliminated all inflammation, it has controlled his symptoms (currently, his only medication is an antacid, Nexium). Perhaps while waiting for the 6MP to begin relieving her symptoms, she can continue to use Modulen (together with 6MP and a regular diet added back) as a maintenance treatment. There are a few children on here who are using EN as a supplement to their medications - I believe Crohnsinct, Twiggy930 and Mom2oneboy have their children on supplemental EN.

As EN does have anti-inflammatory properties, it may help reduce her inflammation and, if nothing else, provides additional nutritional benefits.

:ghug:

 

[my little penguin]

Hugs they can tell if the meds are in therapeutic range by blood test and if she is still havIng symptoms then decide.
It took about 3 months tO get to that level. We stayed on it for 6 months but it wasn't enough . It's hard giving them meds but after a year we are thankful to have them.
Remicade is a miracle for my child.


DS did EN as well and contInues at half dose. It hElps.

 

[crohnsinct]

Aww poor pumpkin. I am with Tess..after allshe has gone through it doesn't seem fair. I remember starting to introduce food for O. Boiled chicken went right through her..I meanboiled chicken? Really? I know you are taking it slowly and it is so hard for them to do and what a trooper trying not to complain.

I hope next week brings some answers. I have no advice re: the drugs as my daughter is on Remicade but if you find yourself going down that path I would be happy to give you our take but I am pretty much a fan.

 

[DustyKat]

Hey catfan2,

How long has your daughter been on Mercaptopurine?

Dusty. xxx

 

[catfan2]

Thanks so much everyone . Dusty, she has been on 50mg of mercaptopurine twice a day for about 10 weeks. Last time we saw the paediatrician, she upped the dose to 60mg and also added the Mesazaline - that was 2 weeks ago. She's having her second MRI scan tomorrow and more bloods on Friday. For the past few days she has been having more stomach pains and hasn't felt like eating, and tonight she was sick :angry-banghead:. It's like she has gone back to square one, before the Modulen. At the moment she is only having 250ml per day, but I'm thinking of increasing it as if she's not eating much her weight will go down again. It's so hard to know what to do! I had a letter from the paediatrician with her last blood results, if I post them on here would anyone be able to explain them? I feel silly not understanding what they mean :blush:
Thanks again xx

 

[Sascot]

Sorry to hear your daughter is getting worse again! So frustrating watching them suffer and not much fun giving the medication when it's not helping any.
I would think it's a good idea to increase the Modulen when she's not eating great. It certainly can only do good! Hope you see some improvement soon.

 

[Johnnysmom]

Catfan,

That seems like a very high dose for a 14 year old. My son was started at 50mg and then moved to 75mg and it was way too much for him. He had nausea and the Dr. said if he is on the right dose he really shouldn't have that. He is now taking 35 mg every other day. Also, there is a lot of controversy on how to take 6mp. Our first G.I. said not to eat two hours before and one hour after taking it and never to take it with milk. So Johnny would stop eating at 7:30 and then take it at 9:30 right before bed. The goal was if there was any nausea he would sleep through it. There was one night we didn't follow this and he was horribly nauseated. Our new G.I. (we moved) said we did not have to follow those instructions. We still do though because we are freaks and won't take any chances. I still don't know if it makes any difference but it has worked for us so far so we keep going.

It took a long time to get Johnny's dose right. I think it should build up in about 3-4 months. I would report her getting sick to the Dr. they can prescribe zofran for nausea and vomiting which helps a lot and they might lower the dosage.

I hope your sweet girl is feeling better soon.

 

[Tesscorm]

If you post her results, I'm sure there will be someone (or a number of people ) who will be able to explain them to you. Also, look on the Forum Wiki - there are a couple of entries there about blood results and test results, etc.

I hope all goes well at the MRI tomorrow. :ghug:

 

[my little penguin]

good luck on the MRI..
WE LOVE numbers:ylol:

 

[DustyKat]

The Mercaptopurine is twice daily at 60mg? That does sound high for a 14 year old.

I think introducing some more of the EN wouldn't go astray.

Good luck with the scan today hun, I hope all goes well. :goodluck:

Thinking of you, :hug:
Dusty. xxx