Remicade and Methotextrate

[Mato3]

Kyle has had his first 3 Remicade infusions and is still not feeling better. Bloodwork is increasing slightly. Gi said today to increase dose of remicade to 500mg and we will go back in 6 weeks. He also wants to add Methotextrate. How do you ever know you are doing the right thing? We never went for a second opinion and I find myself second guessing most of the time. Kyle is way behind in school, has a tutor for 2 hours a day but can rarely ever see her because he doesn't feel well. I want him back to his old self again. I feel so helpless at this point.

 

[izzi'smom]

It's so hard to make those decisions! Our doc didn't push combos but we gave Remi a few months and increased the dose and rate just like you...we eventually got bloodwork and she had developed antibodies to Remi. Has he had a HACA level drawn to see if there are antibodies/Remi in the blood?
You don't know, but be assured that you are making the best decision possible with the info you have available. I used to beat myself up as we kept trying things that didn't work...we are not superhuman, we are parents!
We took Izz 5 hours away for a second opinion...and he basically said he would do the same thing we were doing. I highly recommend getting one...it helps to ease your mind OR can provide you with additional options. Hang in there!!

 

[imaboveitall]

Mato, I know how it is, Violet has NO stamina either and is also on homebound tutoring.
My only suggestion is trying enteral nutrition, as it worked great in V's case for three years, until we had to add meds this Feb.
We also have seen a bunch of docs since Oct when she got worse and it all ended the same; no new path to follow.

Much understanding; I too just want her back to her old self...:heart:

 

[GTR]

Kyle has had his first 3 Remicade infusions and is still not feeling better. Bloodwork is increasing slightly. Gi said today to increase dose of remicade to 500mg and we will go back in 6 weeks. He also wants to add Methotextrate. How do you ever know you are doing the right thing? We never went for a second opinion and I find myself second guessing most of the time. Kyle is way behind in school, has a tutor for 2 hours a day but can rarely ever see her because he doesn't feel well. I want him back to his old self again. I feel so helpless at this point.

My son is on Remicade and takes 3 pills of Methotextrate once a week, he is in his 8th enfusion and now in remission and doing very well. I would let him try it just keep a eye on his blood #s

 

[kimmidwife]

My daughter was just on methotrexate after failing remicade. She did great on it for 2 years. I had never heard of anyone on both.

 

[DustyKat]

How do you ever know you are doing the right thing?

I don't think you ever do hun until you see it working. :hug: We all make these heartbreaking decisions based on what know and are experiencing at the time. It is so darned easy to second guess yourself and wonder if you have gone in too hard and fast. You read of other people's experiences and think...what if I had done that, would it have worked...and then beat yourself up for not trying it. It's doubly hard when you are making these decisions for someone else.

What you are doing isn't wrong but a second, third or fourth opinion never hurts and there is nothing quite like the validation that you are indeed heading down the right path.
When my son was diagnosed I already had 5 years experience of this disease with my daughter. He developed complications and I knew that surgery was the only option for us, I didn't need to be told BUT it still was oh so comforting when we then unexpectedly found ourselves away from home and on a colorectal ward and all the GI's and surgeons there agreed, surgery was the only way to treat what he had. The icing on the cake was the Crohn's specialist saying it too.

Thinking of you and sending loads of hugs and healing thoughts your way...:ghug:

Dusty. :heart:

 

[DustyKat]

Hey GTR, :bigwave:

Good to hear your son is doing well. Long may it continue!

Dusty. xxx