Thoughts on Imuran with Humira and cancer

[cre]

Dr. is ready to start 3 year old on Imuran in addition to Humira. The deadly cancer that goes along with it is really freaking us out!!!! He developed antibodies to Remicade after 6 months of infusions. We have recently switched to Humira and it doesn't seem to be doing the job either. I was just hoping for any thoughts on it.

 

[Maya142]

There's a good presentation on this site: http://programs.rmei.com/CCFA139VL/
that explains the risks with medications used for IBD (like Imuran, Remicade, Methotrexate etc.). The risk is very small and the risk of
complications with IBD is much more likely.

In our case, my daughter was so miserable and sick that we went straight to biologics and adding MTX and later Imuran was a no-brainer. I haven't regretted it even once though of course, like any parent, I worry. She hasn't had any side effects with Imuran really, just some mild nausea.

If your son developed antibodies to Remicade, it's a good idea to add something like Imuran or MTX to prevent him from developing antibodies to Humira, particularly since there are only a few biologics.

I'll tag a few parents with kids on combinations of meds: My Little Penguin, Clash, Farmwife

 

[cre]

There's a good presentation on this site: http://programs.rmei.com/CCFA139VL/
that explains the risks with medications used for IBD (like Imuran, Remicade, Methotrexate etc.). The risk is very small and the risk of
complications with IBD is much more likely.

In our case, my daughter was so miserable and sick that we went straight to biologics and adding MTX and later Imuran was a no-brainer. I haven't regretted it even once though of course, like any parent, I worry. She hasn't had any side effects with Imuran really, just some mild nausea.

If your son developed antibodies to Remicade, it's a good idea to add something like Imuran or MTX to prevent him from developing antibodies to Humira, particularly since there are only a few biologics.


I'll tag a few parents with kids on combinations of meds: My Little Penguin, Clash, Farmwife

Thank you for the info, I will check it out now.

 

[Farmwife]

Yes the cancer risk is always a scary thought but her disease(s) are a lot more scary because I can see it doing damage now. So I'm just glad these meds can help.
My dd has been on both Humira/mtx and now Remicade/mtx. No problems so far. I'm only seeing improvement with each infusion.:thumleft:

 

[Jenn]

Terrifying, yes, but the risk is really very unlikely. My son had a year with 6mp and Humira and it did the trick. Best of luck!

 

[my little penguin]

DS has been on Humira for more than a year and we added MTX this past June.
Scary but under treated disease is a known fact of what will happen and none of it is good .
DS aslo reacted to remicAde on infusion 7&8.
So he switched to humira in April 2013.

 

[Brian'sMom]

I'm so sorry you have to deal with this when your child is only 3yrs old. In regards to your post; They have to post any risks with the meds. The risks are small. Maybe TNF drugs aren't what your sweet boy needs. That seemed to be the case with us. However..some add the 6mp or mtx and it gives the boost it needs. Good Luck. Hope you get some relief soon.

also, we had antibodies to remicade.. but none to Humira or Cimzia. However they didn't do the trick for us.

 

[cre]

Thank you all for your input. I feel a little relief with all your encouraging words and experiences. I think I too rapidly started searching the internet (big problem for me) only to see statistics showing 1 in 1000 chances and it just really scares me. I am leaning more to the side of this not being an entirely true stat. and will try to stay positive.

 

[Pilgrim]

I don't know what to say, except sending my support your way. These decisions are tough, and serious. Do the best you can, and then try not to worry. Nobody has a crystal ball with this crummy disease.

One of my daughters doctors gave her the best prescription - (this doctor also had IBD!) He said to her, "Make sure mom and dad get a lot of hugs. They're probably worried about you!"

 

[LewisS]

I'm on Humira and will be adding 6MP somethime this week or next. The cancer risk does scare me, as it would anybody, but it's a matter of treating the existing disease rather than worrying about another, especially when the risk of that is so small.

Obviously I can't possibly know how it must feel for you as his mother. My mum is the same, so I tend not to tell her ALL the details or the possible side effects, but in your case you have to hear it first hand. Try not to worry too much

 

[DustyKat]

:ghug::ghug::ghug:

I am so sorry you are facing these decisions with your little one cre. Hardest thing ever in life to have to decide these things for our kids.

Unfortunately for those diagnosed at a young age the path can be a difficult one that is not made easier by the thought of the serious side effects of the drugs. It is only natural to be freaked out by them, who wouldn’t be! But then we have the flip side, Crohn’s. This too has the potential for serious side effects if left untreated, under-treated or is non responsive to treatment.

Medication and remission is all about quality of life, minimising the use of steroids and preserving bowel. Loss of any one or all of these can have significant impacts. In my own mind I have reasoned it out like this:

What if my child had diabetes, would I not give Insulin?

What if my child had severe allergies, would I not carry an EpiPen?

What if my child had Asthma, would I not give them inhalers?

What if my child needed a transplant, would I not give the very same drugs used to treat IBD, and in much higher doses, to stop the organ rejecting?

Thinking of you! :hug:

Dusty. xxx

 

[my little penguin]

Numbers that let me sleep at night

Risk of dying in the us under 14
1 in 250 in a car
1 in 1000 drowning
Anyone without Ibd of tcell lymphoma 2 in 10000

Taking humira plus immunosuppressants 6 in 10000

We take risks everyday for our kids to enjoy life
No one is pointing out the risks to you though

 

[Jackman]

Numbers that let me sleep at night

Risk of dying in the us under 14
1 in 250 in a car
1 in 1000 drowning
Anyone without Ibd of tcell lymphoma 2 in 10000

Taking humira plus immunosuppressants 6 in 10000

We take risks everyday for our kids to enjoy life
No one is pointing out the risks to you though

This is an old post.... but exactly what I needed to read as my 17yr old CD (switching to Humira from remi and may need Imuran for liver Hep if not drug induced from Remi)drove to swim practice with my 13 yr old!!! So true! I worry way more than he does. He's just afraid it's going to hurt! Lol

 

[my little penguin]

Jackman fwiw
Ds switched from remicade to humira after 8 months of remicade (allergic reaction)
He was on humira plus mtx for over 5 years
Just switched to Stelara a few weeks ago.

Tagging Girl with a curl
Her Dd has AIH (I think )
Hugs

 

[Jackman]

Jackman fwiw
Ds switched from remicade to humira after 8 months of remicade (allergic reaction)
He was on humira plus mtx for over 5 years
Just switched to Stelara a few weeks ago.

Tagging Girl with a curl
Her Dd has AIH (I think )
Hugs

Thanks!
I take it Humira worked for a while and then stopped? Any difficulties with it? Best of luck with Stelera. It's crazy but I'm happy we have options and him being older and almost 18 is even better. I'm nervous that the Humira won't work as well as the Remicade but I can't risk his liver and doctor said that while liver issues do come up with Humira, it's less common. I'm hoping his body doesn't flare and just transitions nicely. He has been in remission since the induction infusion! And is looking at colleges and visiting swim coaches!! Such an exciting time. I pray the switch is good....

 

[Maya142]

Fingers and toes crossed. It really does help once they turn 18 - it makes getting meds much easier and you have more options. Entyvio and Stelara aren't approved for kids yet, so while they are being used on kids, there is usually a battle with insurance to get them.

My older daughter has also been on Humira for almost 5 years. She is on Humira + MTX and combination works well for her. She is very used to the shots now - just uses them as an excuse to eat extra chocolate on that day .

Many kiddos that have problems with Remicade - usually it's allergic reactions and not liver stuff - are able to switch to Humira without issues. Both my girls actually did better on Humira than on Remicade.

Hopefully it will work well for him and won't hurt too much.

 

[Maya142]

I wanted to add - with my younger daughter, we have done the Remicade + Imuran combination and later Simponi + Imuran. She does not tolerate MTX at all, and so her GI put her on Imuran. It scared me a lot, but she was on it without any major issues.

 

[my little penguin]

Also be prepared switching biologics can cause a flare while you wait for the new biologic to build up
Humira takes 3 to 5 months to be effective
And a bridge therapy may be needed until then

Ds had to stop humira due to surgery (not Crohns related )
And when he restarted
Humira no longer worked

We are still battling insurance for Stelara coverage since Ds is only 13

 

[Jackman]

I'm hoping it will be a smooth transition! His GI is like "I'm going to watch you like a hawk! Lol but to be honest even when flaring he fairs pretty well thank god.... helps number go up slowly and the doctor checks him religiously. Fingers crossed it's smooth. He had Remicade September 8th and she wants to do the loading dose the week of October 14th... so almost three weeks before Remicade would be..... ugh. I don't want him to miss any of his senior year fun!

 

[Jackman]

I hate insurance by the way..... I love that they somehow get a say in treatment overruling the doctors!!!

 

[polly13]

....