Scared 6MP Remicade Humira
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They are all scary to contemplate and accept! 
Without a doubt, I know every parent here has gone through terrible times when faced with these meds. It is heartbreaking. It does get easier, especially when you see improvement. :ghug:
My son is on remicade and my thoughts and justifications are...
- without remicade, he would eventually be facing surgery. It may not work forever but, he's young and needs his small intestine for a long time... if we can put off surgery for a few years (maybe forever!), then this certainly gives some balance to the risks.
- the risks really are small, although, yes, they are there. I had wanted to try LDN, GI was insistent on remicade (or humira) - I read one or two studies/reports that remicade has a greater chance of being successful if used as a first treatment and/or if used within two years of diagnosis... I justified that, if we will eventually be using biologics at some point, I may as well allow it to be used when it has the greatest chance of being successful.
- untreated or undertreated crohns brings many risks to both health and quality of life, one of which can also be cancer (although, I don't have any stats on this).
- my son has faced risks every day: he's very fair skinned - how many times has he been sunburned because of not enough sunscreen but I don't keep him from being outside, he grew up playing hockey - I cringed at the hits and injuries surrounding the sport but he loved it and I didn't stop him from playing, when he and his friends started driving - I worried sick about teenage, inexperienced drivers (still do!) but the transition from inexperienced to experienced drivers is part of life, he'd go to friends' cottages in the summer - swimming, tubing, waterskiing all worried me but the fun and experiences all added to his quality of life. I think a big difference in these risks and those of these meds is that no one is handing us a sheet listing the risk factors and asking us to sign off on them! We accept these types of risks because they improve quality of life and give happiness... hopefully, these meds will do the same.
Of course, I would much, much, much prefer that maintaining a normal quality of life didn't require that my son takes these meds and I always hope that he can eventually be off them but, for now, I try to appreciate that we, at least, have the option to treat with these meds.
Hugs... these are not easy choices. :ghug:
Without a doubt, I know every parent here has gone through terrible times when faced with these meds. It is heartbreaking. It does get easier, especially when you see improvement. :ghug:My son is on remicade and my thoughts and justifications are...
- without remicade, he would eventually be facing surgery. It may not work forever but, he's young and needs his small intestine for a long time... if we can put off surgery for a few years (maybe forever!), then this certainly gives some balance to the risks.
- the risks really are small, although, yes, they are there. I had wanted to try LDN, GI was insistent on remicade (or humira) - I read one or two studies/reports that remicade has a greater chance of being successful if used as a first treatment and/or if used within two years of diagnosis... I justified that, if we will eventually be using biologics at some point, I may as well allow it to be used when it has the greatest chance of being successful.
- untreated or undertreated crohns brings many risks to both health and quality of life, one of which can also be cancer (although, I don't have any stats on this).
- my son has faced risks every day: he's very fair skinned - how many times has he been sunburned because of not enough sunscreen but I don't keep him from being outside, he grew up playing hockey - I cringed at the hits and injuries surrounding the sport but he loved it and I didn't stop him from playing, when he and his friends started driving - I worried sick about teenage, inexperienced drivers (still do!) but the transition from inexperienced to experienced drivers is part of life, he'd go to friends' cottages in the summer - swimming, tubing, waterskiing all worried me but the fun and experiences all added to his quality of life. I think a big difference in these risks and those of these meds is that no one is handing us a sheet listing the risk factors and asking us to sign off on them!
We accept these types of risks because they improve quality of life and give happiness... hopefully, these meds will do the same.Of course, I would much, much, much prefer that maintaining a normal quality of life didn't require that my son takes these meds and I always hope that he can eventually be off them but, for now, I try to appreciate that we, at least, have the option to treat with these meds.
Hugs... these are not easy choices. :ghug:
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Untreated and undertreated Crohn's is far worse than the side effects that may or may not happen. Been there, done that.
My son was pretty much untreated for two years, ended up in bad shape and had to have surgery at the age of 12. Not fun. I completely regret not getting him on stronger meds and getting his Crohn's under control... all because of MY fears of the side effects. I feel completely responsible and it's a horrible feeling.
He was on Azathioprine, the sister drug to 6MP, for six months with no adverse effects. It simply wasn't a strong enough med for him. He's now had two doses of Remicade and finally doing well. Again, no side effects.
The side effects seem scary, but once you see the meds working for your child and they are happy and healthy, it's worth it. And quite honestly, eveything seems to carry the risk of cancer these days. Someone will be along with the statistcs, but the cancer risk is like 4 in 10,000, while the risk of being in a car crash is 1 in 250. Something like that.
Be sure to read the success stories thread sometime too. Lots hope and inspiration in there... partially attributed to these meds.
My son was pretty much untreated for two years, ended up in bad shape and had to have surgery at the age of 12. Not fun. I completely regret not getting him on stronger meds and getting his Crohn's under control... all because of MY fears of the side effects. I feel completely responsible and it's a horrible feeling.
He was on Azathioprine, the sister drug to 6MP, for six months with no adverse effects. It simply wasn't a strong enough med for him. He's now had two doses of Remicade and finally doing well. Again, no side effects.
The side effects seem scary, but once you see the meds working for your child and they are happy and healthy, it's worth it. And quite honestly, eveything seems to carry the risk of cancer these days. Someone will be along with the statistcs, but the cancer risk is like 4 in 10,000, while the risk of being in a car crash is 1 in 250. Something like that.
Be sure to read the success stories thread sometime too. Lots hope and inspiration in there... partially attributed to these meds.
I understand your fears and anxieties. I think most of us feel the same when making these tough decisions.
My daughter was on 6mp for a few months. It seemed to be working for her but in the end it caused liver toxicity. She was closely monitored and had labs every 2 weeks to check her liver function. We only noticed symptoms from the toxicity when her numbers skyrocketed and those symptoms resolved pretty quickly when she stopped the medication. I'm definitely glad we tried it and disappointed it didn't work for her.
Sometimes I think the risks and side effects sound so much scarier on paper. I hope you find peace and good health in whatever decision you make!
My daughter was on 6mp for a few months. It seemed to be working for her but in the end it caused liver toxicity. She was closely monitored and had labs every 2 weeks to check her liver function. We only noticed symptoms from the toxicity when her numbers skyrocketed and those symptoms resolved pretty quickly when she stopped the medication. I'm definitely glad we tried it and disappointed it didn't work for her.
Sometimes I think the risks and side effects sound so much scarier on paper. I hope you find peace and good health in whatever decision you make!
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I really didn't want my son to start any of them either and put it off for a few months. He is now on 6mp (he couldn't tolerate the Aza, his liver numbers really flew up) and is so far fine - no side effects and his faecal calprotectin numbers came down. Good luck!
I was so scared of the biologics too. Many good posts here from some solid mom's. I'd add that when I was worried like crazy, it helped to think of all the people using biologics. Not just IBD, but arthritis and psoriasis etc. The risks of cancer are low. And when you child starts to live without the inflammation, that's awesome! And to keep their intestines intact while we wait for a cure is smart.
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yeah that
I was afraid as well
Ds went through 6-mp and MTX first
that was just a year of him being miserable and damage getting worse.
I got over the scary biologics quickly.
For Ds biologics were the only thing to get him healthy.
risk to consider
for kids under 14 risk of death from:
car 1 in 250
swimming 1 in 1000
t cell lymphoma ( non IBD kids) 2 in 10,000
Risk of t-cell lymphoma while on remicade Plus 6-mp only 4 in 10,000
remicade only the risk is not known
the key is to get something that actually works for your child to get them healthy
most do not get to decide what that drug is since each kid is very individual
hugs
I was afraid as well
Ds went through 6-mp and MTX first
that was just a year of him being miserable and damage getting worse.
I got over the scary biologics quickly.
For Ds biologics were the only thing to get him healthy.
risk to consider
for kids under 14 risk of death from:
car 1 in 250
swimming 1 in 1000
t cell lymphoma ( non IBD kids) 2 in 10,000
Risk of t-cell lymphoma while on remicade Plus 6-mp only 4 in 10,000
remicade only the risk is not known
the key is to get something that actually works for your child to get them healthy
most do not get to decide what that drug is since each kid is very individual
hugs
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- Dec 4, 2011
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- 312
I agree with the other parents above, these medicines are scary. but so is IBD. We also allow our kids to be exposed to all kinds of risks that are part of everyday life but do not focus on them.
My son was dx a little over two years ago. He started with aza but that was not enough to get him to remission. He started Remicade a year ago. This is what put him in remission (knock wood). He is living well and doing things he enjoys
I have learned to deal with the issue at hand and try not to jump to the "what ifs". I focus on when the cause/cure is found hopefully he will have a relatively healthy gi tract to enjoy the rest of his life.
Wishing your daughter success in whatever treatment you choose.
My son was dx a little over two years ago. He started with aza but that was not enough to get him to remission. He started Remicade a year ago. This is what put him in remission (knock wood). He is living well and doing things he enjoys
I have learned to deal with the issue at hand and try not to jump to the "what ifs". I focus on when the cause/cure is found hopefully he will have a relatively healthy gi tract to enjoy the rest of his life.
Wishing your daughter success in whatever treatment you choose.
I cant imagine my young person having to fight this disease, but I know what its like to fight it myself. I have been diagnosed 12 yrs now, and have tried and been on most meds out there. Yes the side effects can be a lil scary, but without the meds I don't think I could get threw a day. So as much as I don't like them, I cant live without them. I hope they work and things get better.
DustyKat
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Hey Julia…:ghug:
I hear you hun just as everyone else does here.
I have experienced what Crohn’s can do when not treated and I never what to go back to that place again. Granted Sarah was undiagnosed at the time but it took her to within a whiskers breadth of losing her life. I don’t say that to scare you as I surely don’t want to do that but for some it does have that potential. She was diagnosed during emergency surgery.
My son was diagnosed super quick and yet still he developed complications very quickly after that no medication was ever going to successfully treat. So he too ended up needing surgery.
My daughters diagnosis was so unexpected and her time in ICU and hospital left me so bewildered at how it had come to this that I didn’t really have time to think. I accepted anything and everything with open arms that I thought would stop it from happening again.
By the time my son was diagnosed I had 4 years of living with Crohn’s to hone my knowledge and anxieties! :lol: They started him on Pred, I hated the thought of it. I was use to Imuran so not a lot of fear there, then there was then talk of Humira and all I wanted was the Pred and Imuran. Then all that was taken out of our hands and surgery was our only option. Yep, all I wanted then was Humira! One fear simply replaced another as they upped the ante.
So…my two had surgery very early on in their journey that put them into remission and Imuran was the drug of choice as a maintenance med. My daughter has been on it for 7 years and my son 3 years. They are both closely monitored and neither has had issues with it. Because of that they have been able complete school, both have just finished their undergraduate degrees and both with be going onto further study next year. At this point in time life is good and I can’t say that Imuran hasn’t played a part in getting them where they are today.
Good luck and thinking of you!
Dusty. xxx
I hear you hun just as everyone else does here.
I have experienced what Crohn’s can do when not treated and I never what to go back to that place again. Granted Sarah was undiagnosed at the time but it took her to within a whiskers breadth of losing her life. I don’t say that to scare you as I surely don’t want to do that but for some it does have that potential. She was diagnosed during emergency surgery.
My son was diagnosed super quick and yet still he developed complications very quickly after that no medication was ever going to successfully treat. So he too ended up needing surgery.
My daughters diagnosis was so unexpected and her time in ICU and hospital left me so bewildered at how it had come to this that I didn’t really have time to think. I accepted anything and everything with open arms that I thought would stop it from happening again.
By the time my son was diagnosed I had 4 years of living with Crohn’s to hone my knowledge and anxieties! :lol: They started him on Pred, I hated the thought of it. I was use to Imuran so not a lot of fear there, then there was then talk of Humira and all I wanted was the Pred and Imuran. Then all that was taken out of our hands and surgery was our only option. Yep, all I wanted then was Humira! One fear simply replaced another as they upped the ante.
So…my two had surgery very early on in their journey that put them into remission and Imuran was the drug of choice as a maintenance med. My daughter has been on it for 7 years and my son 3 years. They are both closely monitored and neither has had issues with it. Because of that they have been able complete school, both have just finished their undergraduate degrees and both with be going onto further study next year. At this point in time life is good and I can’t say that Imuran hasn’t played a part in getting them where they are today.
Good luck and thinking of you!
Dusty. xxx
