More drugs

[Canadianmomto4]

We just got booked to go to the Pediatric GI division at children's hospital for the 17th of July (6 hours drive away!) to switch up my 14 year old son’s meds. We have been advised to consider the following 3 options as the next step in his treatment. 1-another round of Prednisone, 2-switch his Immuran to Methotraxate (sp?!) or 3-try Remicade. He is currently taking Immuran 175 mg daily, Omeprazole 40 mg daily, Flagil 1,000 mg daily and Asacol 3,200 mg daily. What have peoples experiences been with these meds? There is positives for 2 of the options that being Methotraxate is only once per week and Remicade is only every 6-8 weeks. In order to do Remicade we will have to travel to Children’s Hospital 6 hours drive away frequently, so that is another consideration. My son has a few other issues that factor into the decision making mainly he is hyper-sensitive to pain, ADHD, ODD, Generalized anxiety disorder, Hypo-thyroid, Asthma (in remission ), and on and on....
So what are peoples thoughts, experiences and advice?
I thank you all for sharing it is so very, very helpful

 

[dannysmom]

Hi. I really do not have any recommendations on your 3 choices ... just wanted to offer support by saying I feel for your decision. Hope you get some good replies. Good luck!

 

[David]

How old is your son and what are his specific symptoms at present?

I read your initial thread and didn't see that.

 

[Canadianmomto4]

Hi David, my son is almost 14 and has been flaring since the start of May. He has terrible pain in his stomach, dramatic weight loss currently at -25lbs, exhaustion, nausea, vomiting and diarrhea, no appetite, no energy, miserable and very angry. This is his longest flare and he has really had it and I feel he's sliding down into clinical depression. Thankfully we will be meeting with a youth mental health team as well on the 24th.

 

[David]

Of the three you mentioned, I would probably go with the Remicade based strictly upon the studies I've read. I'd want to stop the Imuran rather than utilize the two in conjunction to reduce the risk of hepatosplenic T-cell lymphoma since he's male and in that age group. Having read your original thread, I'd also do whatever it took to convince him to utilize some form of enteral nutrition as his resistance to a wonderful treatment option is really problematic. I'd also get his vitamin B12, folate, vitamin D, and magnesium and every other vitamin and mineral level they're willing (but DEFINITELY those) to have tested based upon the symptoms you're describing.

With those mood problems, I'd be really weary of the prednisone.

It's a tough decision and all must be really overwhelming for you. But I hope that helps in some way.

*hugs*

 

[izzi'smom]

We have done Pred for over a year (hate it! mood problems, slleep problems, fluid retention) and Remi. Remi we had zero issues with...except that it didnt work lol!

 

[Canadianmomto4]

Thanks all, I have ruled out doing another round of prednisone, just too much for D. Now trying to decide between remicade and methotraxate. Did anyone's kids have any side effects from either treatment? I want to make the right decision here and pray that we can get him into remission or at least a break from the symptoms-as I know you do too for your child.

 

[crohnsinct]

My daughter has had 6 Remicade infusions and so far so good. She goes every 5 weeks.

Good luck with your decision.

 

[my little penguin]

Ds is on methotrexate here.
WE just started 5 weeks ago-
not sure on side effects fatigue so far.:yrolleyes:
He does injections every week- not a real issue.

 

[Clash]

Hi and welcome! I am with David I would skip the combo. My son is 15 and he was diagnosed this year. He started remicade back in March. It really made a difference in his symptoms right away. We have finished the loading doses and are now doing the first 8 week wait for the next infusion. I know what you mean about the prednisone, my son was on it for awhile too and the moodiness, insomnia and restlessness were awful for him. I hope the docs are able to find something to help with your son's flare. Oh, I would also like to mention, where my son goes to get his Remicade infusion is at his Ped GI's lab, so for the time of the infusion he is surrounded by kids his age or around his age that are dealing with the same thing. He says it is good to have a little support group those 2+ hours to talk about CD and the different ways it is affecting each of them with kids that can actually understand. It has helped, I think, with his moods, to have that support group. They have all become xbox friends, fb friends..etc so the support sort of spilled over into all facets of his teenage life which is great! If your son's remicade lab is infusing other kids maybe you could ask to schedule when some of them are there or check in to support groups (local, internet or otherwise) to give him an outlet with other kids dealing with CD.

 

[David]

I'm doing a review of articles in a book intended for medical professionals. Here are a few article reviews that might help you a little:

Methotrexate: http://www.crohnsforum.com/showthread.php?t=37572
Remicade combo: http://www.crohnsforum.com/showpost.php?p=445199&postcount=3
Importance of mucosal healing: http://www.crohnsforum.com/showthread.php?t=36253

 

[izzi'smom]

David, you rock. Just sayin'.

 

[DustyKat]

I have no experience with either Methotrexate or Remicade but I am happy to give my two cents worth! :ybiggrin:...

He has terrible pain in his stomach, dramatic weight loss currently at -25lbs, exhaustion, nausea, vomiting and diarrhea, no appetite, no energy, miserable and very angry. This is his longest flare and he has really had it and I feel he's sliding down into clinical depression.

...Although I know that Imuran and Methotrexate are completely different drugs and a person can have wonderful results on one and not the other they are still in the same class. My concern lay in what you stated above and my fear is that he may well have progressed past what the immunosuppressants can offer him.

“Methotrexate provides incomplete healing of the gut mucosa, which may explain the high relapse rate of Crohn’s disease when given as maintenance,”

http://www.peerviewpress.com/methotrexate-provides-inferior-mucosal-healing-crohns-disease-versus-azathioprine-infliximab-presented-ecco-ibd

Even aside from the findings above I think Remicade may well be the way to go. It seems to me with the symptoms he is experiencing, the duration of time they have been present and his other co morbidities this flare needs to be knocked on the head fast and Remicade will be your best chance at doing that.

Dusty. xxx