Remicade & Imuran or other medication

[mreyn]

Does anyone know? My son is 12 and just had his 2nd remicade infusion. The dr wants to add Imuran so his body doesn't build antibodies to the Imuran but we don't want that combo for him because of side effects for young males. We're trying to see the best/safest route for him...

Can Imuran be added at a later time if he starts building antibodies?

OR would it be best if Remicade stops working to go to a different medication?

 

[Clash]

Have you asked about adding methotrexate to remicade instead of Imuran? It is an immunosuppressant but often with young males GIs opt for it instead Imuran or 6mp.

 

[mreyn]

if it's okay to do so.. we'd rather not add either unless it comes down to a have to situation. We're still really scared about the remicade already, the side effects, the fungal infections, having him around people with chickenpox,measles, or vaccinated recently, etc.

 

[Clash]

I think this has been mentioned to you before but what about adding EN?

Has he responded to the remicade at all? Sorry I couldn't find your original thread but it might help you make a decision if you know if he is responding at all or the response is only lasting so long. Has the gi ran an antibodies test to determine if he is already building antibodies? Dusty or MLP might be able to better tell you about it working against antibodies if added later. Hopefully, since I tagged them they will be by to comment.

So sorry you are having to make these hard decisions.

 

[my little penguin]

Once you start building antibodies to the biologics Mtx only slows that down it does not stop it.
If you start it before than the theory is you will not build antibodies and it will be effective longer.
Look at the research sticky.
However the studies so far have shown there was no difference in effectiveness or remission time (lasting) between remi and those on the combo.
There have been no good studies on the combo and young males .
Unfortunately kids immune system change drastically so "tricking" it with biologics is hard to do long term .
Fwiw w are in the same spot . 3 infusions so far for DS.

 

[Malgrave]

In my son's case the Imuran was started first and then after 2 months he started Remicade. We were told that this must be order and the plan was that after 6 months of remission, Imuran should be weaned off.

He never achieved remission with Remicade, on the contrary, and he developed antibodies already after 2nd infusion. Now he is only on Imuran end EN.

 

[mreyn]

At first we were told that Remicade only affected the tnf protein and would leave the rest of his immune system intact.. however after a lot of reading.. I'm finding lots of stories about people dying from histoplasmosis and even chickenpox. I'm really angry because we live in Texas so chickens, barns and hay are everywhere which it says stay away from for histoplasmosis. So now I'm scared of him being able to fight things off. anybody have any information that would be great. Is there anything I can give him with the remicade that may help fight things off and/or keep his body from getting too acidic to hopefully not leave room for lympoma to develop.

 

[Tesscorm]

I can't offer you much info or advice but I can certainly understand your worries and send you as much support as I can!

I do know that my son's GIs (both his ped and new adult GI) both recommended metho if combination treatment was needed. They both felt that there were lower cancer risks for young boys with the metho opposed to the imuran. I'm sorry I don't have more... both conversations were at very preliminary stages so we didn't get into a lot of detail.

:ghug:

 

[crohnsinct]

If your doc's concern is the building of antibodies then the EN will not help with that. EN added to Remicade (which is what my daughter did) will only help with management of disease.

I have heard that it is pretty routine these days for docs to add MTX (ours doesn't)when starting Remicade to prevent the building of antibodies. If Remicade works and your child build antibodies that would totally stink because then you have to abandon a good med and usually can not come back to it.

The risks are very scary but keep in mind they are very very low. The risks of a child dying in a car accident or drowning are much much higher yet we accept those risks everyday. Undermanaged disease also carries with it greater risk.

I can't speak to the chicken, barn etc issues but my daughter has been on Remicade since February and has been healthy as an ox (knock wood). The flu went through our family as well as a stomach bug and she was the only person not touched. A boy in one of her study groups had bronchitis and a few others got it but not her. I just attended an IBD symposium and the lowered immune systen was the big question on parents minds and the doc stressed that the immune system is slightly lowered and also stressed that the big deals are not to be exposed to tuberculosis and no live vaccines but other than that they should enjoy close to the same level of health they did prior to starting these drugs. Oh yeah and infections taking longer to heal....well she had very badly infected eczema on her neck and it cleared in the same amount of time (with drugs) as it would have taken anyone else.

She exercises a lot, eats a clean diet, gets plenty of good sleep and takes a multi vitamin, so maybe that has something to do with it but otherwise nothing special here.

Good luck with your decision, I know it isn't easy!

 

[Malgrave]

I really don't want to scare anybody and I am sure that Remicade works for many, but in my son's case it was a total catastrophe. He has never been that sick than during the 8 months he got it: adeno viruses took him to the hospital twice, one pneumonia, bleeding problems,... In total 5 different hospitalisations (for 7 weeks in all).

The broad immunological tests (which are still going on) have already showed that my son might have some sort of immunodeficiency, so that can also explain why his immunity decreased so badly with the Remicade...

 

[mreyn]

Yes, I'm really worried about all of it. He never had the chickenpox or mmr vaccine due to a bad reaction to other shots.. so now that he has already started remicade, we'll have to see what the dr recommends. I did hear of someone else's child who was vaccinated but they still got chicken pox. Just one more thing to worry about on top of everything else

 

[DustyKat]

I have no further advice to give about how the combo's work over what mlp has already given.

It surely is a worrying and heartbreaking time when our children have to take these drugs. I think the only thing that even remotely grounds me at these times is to force myself to look at the other side of the coin. It is no more pleasant or comforting but knowing what untreated or under treated Crohn's can do does lighten the load a little and at least provide justification for the decisions made.

Thinking of you. :hug:
Dusty. xxx

 

[Crohnaroideramasis]

Hello. I have been taking both Imuran and Remicade for ten months. My personal testament is that these two drugs have saved my life and given me my life back. I understand that the research shows that the combination of these two medications gives a significantly higher percentage of success in remisson. In my case this is true. If you are so ill that you must take Remicade, perhaps adding a drug like Imuran to make sure it works isn't a bad thing? Everyone reacts differently to these very serious drugs with serious side effects. Since a precious child is involved, taking treatment step by step under your doctors care is so important.

 

[momoftwinboys]

My son is 11 and on remicade aza combo. I do have concerns but am counting on that the benefits outweigh the risks. He was dx in oct 2011 and started aza then. His disease progressed and he started remicade this october. The gi nurse indicated we would drop the aza after the 4th infusion. This goes along with what was in one of David's posts from the medical book.
- In young men who have been on and failed azathioprine or 6-MP and move on to biologics, the author works to get them off the thiopurine within 6-12 months to reduce risks of cancer. They stay on that long to reduce the risk of immunogenicity.
http://www.crohnsforum.com/showthread.php?t=41874
He has his 3rd infusion scheduled for Monday and a gi visit on Thursday. From what we see he is doing really well. He is filling out, and has lots more energy. He and his brother are constantly annoying each other again. This is a good thing since it means he is feeling more and more like he did before crohns.
No easy decisions or answers with this disease. Good luck with whatever treatment you decide upon.

 

[Patricia56]

I also recommend using EEN to see if you can achieve remission. I did that with my son. EEN improved his condition but did not get him into full remission and once we added food (any food) he immediately began to flare.He also began to develop some serious mental health issues in response to the withholding of food, something that I understand is not that uncommon. We really had no choice but biologics and did a combo for 2+ years when he was age 11 to 14.Then he continued on MTX but stopped Humira and remained in solid remission for another 2+ years. This summer he had a small flare which was handled with a small increase in his MTX and he is now back into remission.

 

[mreyn]

How many of you are using remicade and probiotics? I was going to add probiotics back into my sons list of things to take but I found information that says probiotics can interact with immune suppressants... wanted to see if anyone had any additional information.

 

[Patricia56]

I suggest you consult your doctor about this.