Remicade not working

[Hope345]

Our daughter has had her 5th treatment of Remicade and her Crohns seems to be coming back full force. she has never gone into remission, but her mild case seems to becoming severe again. She is scheduled for her first MRE this Tuesday and maybe it will show us what is happening. I am not sure exactly what the MRE reveals. I have read some information about the MRE, but haven't rapped my brain around it yet. Just hoping the Crohns has not spread.

We are also not sure what would be the next course of action after Remicade. She is only 14 and I think that is too young for Humira.

It has been hard to watch her be confined to the bed again and have her in pain.

If anyone can let me know what happens after Remicade, it would be greatly appreciated.

thank-you to all who take the time to give support to others. :heart:

 

[Scaryman]

Talk to your GI, but in my case I can't take Imuran or 6-mp. So they broke my immune systems antibodies (past remicade infusion reaction) so I can go on another tnf blocker that I'm currently on- humira. Methotrexate may not Be for everybody which is why I asked you talk to your doctor, but MTX increases the potency of humira. But your have no immune system.

 

[Clash]

Remicade worked wonders for my son during the loading doses but he couldn't manage the 8 week doasages as his cd would flare up before we reached 6 weeks so we added methotrexate and so far so good. He hasn't had any symptoms(touch wood) but we are staying with 6 weeks doses for now.

Did she have any positive response to the remicade? She may be a first time non responder. There is a study David posted about it, when I get a free moment I'll post a link to it.

 

[Scaryman]

Yes, clash is right to some point but again which is why you should check with your GI. But some ppl respond after 1st or second infusion.

 

[Clash]

Julie345, here is the link I was referring to, click here David does a great job of putting the study into layman's terms.

Your next step is really dependent on a couple of factors, has she ever responded to the infusions, why she is not responding etc. Reading through the study linked to above it may give you a better idea of what your options are. Good luck.

 

[Scaryman]

In my case according to that link I need to give MTX/humira combo 12 weeks before thinking of non responsiveness or a over all effectiveness. Thanks for the link clash, very useful for anyone considering anti-tnf.


Just noticed your in Georgia, I just moved to south Florida to be near family cause of my medical situation. Are you in Atlanta? Which part etc. kind of miss the good ole ATL.

 

[Clash]

Yeah, I thought David did an awesome job with that paper and made it layman friendly so I wasn't looking up terms all night. I actually have the book he is posting those different studies from. I would say the book is awesome but it is for the medical professional so when I go through I might as well be reading banana, banana, banana! So technically, I only know it's awesome when David deciphers it! Ha

Actually, I'm in middle Georgia but C's Ped GI is in Atl and my husband lived in Smyrna/Vinings area before we married and I loved it. We plan on moving back that way when my son graduates HS.

How are you liking South Florida? We have some family down that way that we visit every summer, the kids love it down there!

 

[Clash]

I do know what you mean about the cost of homes, we had a condo down there. Our intentions were to flip it. We gutted it, refurbished, remodeled and finished just in time for the burst of the realty bubble. We had to sit on it for quite awhile before finding a buyer. Luckily, a buyer came along needing exactly what we had due a job transfer and we unloaded it. Whew, we came out okay but nothing compared to projections pre housing bubble.

I love the convenience of ATL, everything at your fingertips, shops, entertainment, restaurants...you just don't get that where we live now.