Opinions on using Biologics from a scared mama

[KimB9995]

Hello, I'm new to this forum and so thankful I've found it.
I'll give a little background to our story....
Last spring, my then 11 yo daughter came down with a low grade fever, fatigue, cough, diarrhea that wouldn't go away. Initially I thought it was a virus but when it continued (4 weeks) I took her to the Dr, thinking she probably had mono. After bloodwork came back the pediatrician immediately set us up an appointment with the infectious disease dept at Vanderbilt Children's hospital. After weeks of different Dr's, tons of blood work, we landed in the GI dept. Following an upper/lower endoscopes and an MRE we found she had Very significant Crohn's disease affecting her mouth all the way through to her rectum.
Needless to say we were shaken up with the diagnosis. We also discovered that she was severely malnourished, but wasn't noticeable because her height/weight was in proportion to each other. Treatment started with nightly NG tube feedings and she was a champ at doing the insertion herself. After just a couple of weeks she was a different looking/acting child (for the better). During this treatment we continued to monitor with monthly bloodwork. Her numbers didn't improve much even though she was feeling good. The Dr's opinion after 3 months was that we needed to start 6 mp along with a regimen of prednisone. Pre testing revealed that she now had autoimmune hepatitis. After that blow, we started on the meds and saw a significant improvement in her inflammatory #'s but not remission #'s. After 5 months (December)of NG tube feedings, she had gained 30lbs
but had/has not grown in height as of yet. The tube feedings were getting to be too much for her so we (against Dr's advice) stopped those. I'm sorry for all the rambling.....I'm even leaving a lot out. I took her to a Functional medicine Dr to try to find a better nutritional drink to replace the (big pharma) formula, since the GI Dr. Didn't want to help us find an alternative.
In January of this year, the upper/lower endoscopes were repeated along with a liver biopsy. The endoscopes showed significant improvement in her Crohns but the liver biopsy showed much more scarring than they had planned on seeing. Her 6mp was increased and she was put on Entocort also.
Currently her liver enzymes remain in "good" levels, but her inflammation markers are continuing to increase monthly. Her Dr has suggested either upping her 6mp and doing another course of prednisone or going with the Remicade/Humira infusions. He said due to her Crohns being in her entire GI tract, the 6mp may not be enough to control her disease, but I'm so uncomfortable with this medication. Also, she has not been symptomatic since a month after her initial treatment began last July. Any and all thoughts and opinions will be welcomed. Thank you.

 

[Clash]

Welcome to the forum. So sorry you find yourself here.

Each of us parents have a med that terrifies us. It's different for each of us. I have avoided putting my son on either of the thiopurines thus far. Admittedly, the GI has also had this mindset so it really hasn't been an issue.

My son was put on remicade immediately after dx. I don't think my fear was so great because he was in such a horrible state.

For the majority of patients the biologics are effective and give them back their quality of life.He was asymptomatic after the first infusion. It did give my son back his QOL but unfortunately his disease didn't fully respond to remicade and he required a small bowel resection. He had to switch to humira afterward but his last scope has shown that the disease has progressed. My greatest fear is that these meds won't work because uncontrolled CD is a very scary thing.

I'm going to tag my little penguin as she has a son your age and she also has some statistics that will help you put the use of these meds in perspective.

Sometimes it helps to write down all of your questions and concerns and go over each of them with the GI. Because no matter the treatment for it to be effective you have to be comfortable giving it a chance. If you don't feel that you are comfortable with a doc or treatment then odds are higher for noncompliancy. Non compliancy issues with biologics can lead to the build up of antibodies which can prevent the patient from being able to return to that biologic in the future.

I hope things turn around soon for your daughter. I'm going to tag some other parents to bring their attention to your post.

Maya142
Crohnsinct
Jmrogers4
Mehita
Kimmidwife
Sascot
Jenn
Pdx

 

[Maya142]

Hi and welcome (but sorry you have to be here)!

My daughters have both been on biologics for years. I agonized and agonized before putting both my girls on biologics, but honestly, I have never regretted it for a second. I am just so grateful they exist and that we have these medication options. At some point, the disease became much scarier than the drugs for us.

My younger daughter was diagnosed at 16 with Crohn's and was put on Remicade and Methotrexate immediately. It took 2 infusions before she had any response to Remicade, and then about 4 infusions (10 weeks) before she felt significantly better.

Within 8 months, her scopes were much better. ALL the inflammation in her colon was gone. All the ulcers were gone. Her colon looked "beautiful" according to the doctor! Her terminal ileum still showed mild inflammation but much better. Her stomach pain completely went away.

She did also have trouble gaining weight and we went to NG tube feedings too.

Some kids get G-tubes (placed in their stomachs surgically) eventually if they need feeds long-term. That might be an easier option, if she does still need the calories. The recovery is usually just a week or so with a day or two in the hospital.

My daughter has a GJ tube (goes into the stomach and small bowel) because she has gastroparesis (delayed gastric emptying - separate from Crohn's). The GJ tube is much easier on her than NG and NJ tubes since no one can see it and she doesn't have to insert it nightly.

She could also drink shakes - there are many parents on here whose kids drink shakes to gain weight/grow. Ensure and Boost taste the best, but if she needs a more broken down shake, then semi-elemental formulas like Peptamen Jr and Pediasure Peptide are usually used. It depends on the kiddo really - some kids tolerate Ensure and Boost with no issues at all.

My girls have been on both Remicade and Humira over the years and both preferred Remicade. They liked the infusions - only once every 6-8 weeks, depending on how often the kiddo needs (they can be given as frequently as every 4 weeks though). They liked the chance to miss school and watch TV and nap. The nurses also fuss over the kids during infusions and it's just one poke every so often.

Humira is a painful shot that is given every 2 weeks (can be given weekly). My girls like the convenience of it (you give it at home) but hated the shot because it hurts. They did learn to deal with it but still hated it. Remicade was definitely the preferred biologic at our house!

Biologics are actually quite safe - in fact, drugs like 6MP and Imuran scare me more (my daughter is currently on Imuran). My girls have never had side effects at all from biologics, besides a little tiredness after Remicade infusions. On the other hand, they both had issues with immunomodulators like Methotrexate and Imuran.

This is a good presentation about the risks and benefits of various IBD treatments: http://www.ccfa.org/news/do-ibd-treatments-cause.html

Good luck with whatever you choose!

 

[GirlwiththeCurl]

Hi! I'm sorry to hear about your daughter's diagnosis. I'm pretty much a novice at this, but my daughter also has AIH as well as indeterminate colitis (and also PSC, a disease of the bile ducts).

Am I right in thinking that you must continue the 6mp for the AIH whether you start the biologics or not? We were told that my daughter would be on azathioprine for a minimum of two years for the AIH. Fortunately her liver responded beautifully to it. She did continue to have diarrhea despite the azathioprine and her doctor added Flagyl which seems to have given her the necessary boost to get her colonic inflammation under control. However, her colitis was comparatively mild to begin with, and from what I understand using antibiotics as a maintenance med is more successful in younger kids (my daughter is six). I know some people have seen bad side effects from using Flagyl even short term.

I am not pushing Flagyl really. Just telling you what happened with my daughter. After spending some time on the forum I don't think I would hesitate to approve biologics if the IBD was uncontrolled.

Good luck!

 

[KimB9995]

Welcome to the forum. So sorry you find yourself here.

Each of us parents have a med that terrifies us. It's different for each of us. I have avoided putting my son on either of the thiopurines thus far. Admittedly, the GI has also had this mindset so it really hasn't been an issue.

My son was put on remicade immediately after dx. I don't think my fear was so great because he was in such a horrible state.

For the majority of patients the biologics are effective and give them back their quality of life.He was asymptomatic after the first infusion. It did give my son back his QOL but unfortunately his disease didn't fully respond to remicade and he required a small bowel resection. He had to switch to humira afterward but his last scope has shown that the disease has progressed. My greatest fear is that these meds won't work because uncontrolled CD is a very scary thing.

I'm going to tag my little penguin as she has a son your age and she also has some statistics that will help you put the use of these meds in perspective.

Sometimes it helps to write down all of your questions and concerns and go over each of them with the GI. Because no matter the treatment for it to be effective you have to be comfortable giving it a chance. If you don't feel that you are comfortable with a doc or treatment then odds are higher for noncompliancy. Non compliancy issues with biologics can lead to the build up of antibodies which can prevent the patient from being able to return to that biologic in the future.

I hope things turn around soon for your daughter. I'm going to tag some other parents to bring their attention to your post.

Maya142
Crohnsinct
Jmrogers4
Mehita
Kimmidwife
Sascot
Jenn
Pdx

Thank you so much for your response. Even after 9 months into this journey, my head is still spinning. 6mp was not our first choice of medication, but after the diagnoses of AIH, the other was no longer an option. I can't even remember now what it was. I'm trying to weigh all information I can get my hands on to make the best possible choice for our daughter.

 

[KimB9995]

Hi! I'm sorry to hear about your daughter's diagnosis. I'm pretty much a novice at this, but my daughter also has AIH as well as indeterminate colitis (and also PSC, a disease of the bile ducts).

Am I right in thinking that you must continue the 6mp for the AIH whether you start the biologics or not? We were told that my daughter would be on azathioprine for a minimum of two years for the AIH. Fortunately her liver responded beautifully to it. She did continue to have diarrhea despite the azathioprine and her doctor added Flagyl which seems to have given her the necessary boost to get her colonic inflammation under control. However, her colitis was comparatively mild to begin with, and from what I understand using antibiotics as a maintenance med is more successful in younger kids (my daughter is six). I know some people have seen bad side effects from using Flagyl even short term.

I am not pushing Flagyl really. Just telling you what happened with my daughter. After spending some time on the forum I don't think I would hesitate to approve biologics if the IBD was uncontrolled.

Good luck!

Thank you so much for responding. That is a good question about remaining on the 6mp too for the AIH if we go with the Biologics treatment. Honestly, I'm not sure of that. There has been no mention of using any antibiotics for her treatment of Crohns.

 

[my little penguin]

Antibiotics are not a long term solution for crohns period.
Girl with a curl is the exception not the rule many many studies show prolonged use of flagyl leads to neuropathy in the limbs .
The majority of Gi will not leave their patients in it long term since neuropathy is a known side effect not a potential side effect .
I will post the thread where this is discussed with sources
Thread on this discussion
http://www.crohnsforum.com/showthread.php?t=75673

Ds is 12 . He was dx at age 7 . He started on Pentasa then went to 6-mp then Mtx and after a year of dx moved on to remicade .
Biologics are scary from what doctors tell you but honestly outside of me feeling scared my kid feels great on them - no real side effects
Lower level meds all caused him issues plus he got none of the benefit - he felt horrid

He is currently on humira and Mtx ( Mtx for his juvenile spondyloarthritis ).

He also drinks formula ( peptamen Jr ) and has for 5 years
It lets him grow and gain like his peers
Most kids with crohns need more than the average kid for calories just to maintain growth
I get your not about formula - when Ds was a baby completely breastfed - whole foods etc...
But despite these he didn't gain weight from age 5-7
Even now when he lowers down his formula he will lose weight



As far as risk
Numbers no one tells you
Risk of death in those under 14
By car 1 in 250( yep Ds does that everyday )
By drowning even if they can swim 1 in 1000

T cell lymphoma average person on the street without Ibd or meds
2 in 10000

Ibd kiddo taking biologics and immunosuppressants 6 in 10000


Not to mention normal kid meds are also deadly
Tylenol - liver damage and Steven Johnson syndrome which can kill
But the benefit is much higher than the risk - give. To infants
Same risks for amoxiciilian


So we take risks everyday but fixing crohns early is key
Saving as much of the bowel as possible until better drugs come down the pipe
Since the younger the age the more aggressive the disease tends to be

I didn't get here over night spent a lot of time crying and trying to avoid all meds
I thought Pentasa was horrible - been at this 5 years so....

But once you get the right combo and your child gets a new normal
You want those "scary " meds to work as long as possible

 

[GirlwiththeCurl]

I should add that my daughter's IBD is almost certainly secondary to her PSC, and that almost all PSCers have ulcerative colitis rather than Crohns. The docs weren't able to determine for sure which she had from her biopsies, but we are pretty much operating under the assumption for now that she has UC. So her treatment is really an orange to your apple.

 

[KimB9995]

Antibiotics are not a long term solution for crohns period.
Girl with a curl is the exception not the rule many many studies show prolonged use of flagyl leads to neuropathy in the limbs .
The majority of Gi will not leave their patients in it long term since neuropathy is a known side effect not a potential side effect .
I will post the thread where this is discussed with sources
Thread on this discussion
http://www.crohnsforum.com/showthread.php?t=75673

Ds is 12 . He was dx at age 7 . He started on Pentasa then went to 6-mp then Mtx and after a year of dx moved on to remicade .
Biologics are scary from what doctors tell you but honestly outside of me feeling scared my kid feels great on them - no real side effects
Lower level meds all caused him issues plus he got none of the benefit - he felt horrid

He is currently on humira and Mtx ( Mtx for his juvenile spondyloarthritis ).

He also drinks formula ( peptamen Jr ) and has for 5 years
It lets him grow and gain like his peers
Most kids with crohns need more than the average kid for calories just to maintain growth
I get your not about formula - when Ds was a baby completely breastfed - whole foods etc...
But despite these he didn't gain weight from age 5-7
Even now when he lowers down his formula he will lose weight



As far as risk
Numbers no one tells you
Risk of death in those under 14
By car 1 in 250( yep Ds does that everyday )
By drowning even if they can swim 1 in 1000

T cell lymphoma average person on the street without Ibd or meds
2 in 10000

Ibd kiddo taking biologics and immunosuppressants 6 in 10000


Not to mention normal kid meds are also deadly
Tylenol - liver damage and Steven Johnson syndrome which can kill
But the benefit is much higher than the risk - give. To infants
Same risks for amoxiciilian


So we take risks everyday but fixing crohns early is key
Saving as much of the bowel as possible until better drugs come down the pipe
Since the younger the age the more aggressive the disease tends to be

I didn't get here over night spent a lot of time crying and trying to avoid all meds
I thought Pentasa was horrible - been at this 5 years so....

But once you get the right combo and your child gets a new normal
You want those "scary " meds to work as long as possible

Thank you for your continued input. I apologize for my lack of knowing how to operate in this forum. I know I've replied to several more posts, but I don't see them showing up So I'm not sure if they've posted.
I welcome all of your opinions, especially since you've all been on this journey far longer than we have.

 

[KimB9995]

Hi and welcome (but sorry you have to be here)!

My daughters have both been on biologics for years. I agonized and agonized before putting both my girls on biologics, but honestly, I have never regretted it for a second. I am just so grateful they exist and that we have these medication options. At some point, the disease became much scarier than the drugs for us.

My younger daughter was diagnosed at 16 with Crohn's and was put on Remicade and Methotrexate immediately. It took 2 infusions before she had any response to Remicade, and then about 4 infusions (10 weeks) before she felt significantly better.

Within 8 months, her scopes were much better. ALL the inflammation in her colon was gone. All the ulcers were gone. Her colon looked "beautiful" according to the doctor! Her terminal ileum still showed mild inflammation but much better. Her stomach pain completely went away.

She did also have trouble gaining weight and we went to NG tube feedings too.

Some kids get G-tubes (placed in their stomachs surgically) eventually if they need feeds long-term. That might be an easier option, if she does still need the calories. The recovery is usually just a week or so with a day or two in the hospital.

My daughter has a GJ tube (goes into the stomach and small bowel) because she has gastroparesis (delayed gastric emptying - separate from Crohn's). The GJ tube is much easier on her than NG and NJ tubes since no one can see it and she doesn't have to insert it nightly.

She could also drink shakes - there are many parents on here whose kids drink shakes to gain weight/grow. Ensure and Boost taste the best, but if she needs a more broken down shake, then semi-elemental formulas like Peptamen Jr and Pediasure Peptide are usually used. It depends on the kiddo really - some kids tolerate Ensure and Boost with no issues at all.

My girls have been on both Remicade and Humira over the years and both preferred Remicade. They liked the infusions - only once every 6-8 weeks, depending on how often the kiddo needs (they can be given as frequently as every 4 weeks though). They liked the chance to miss school and watch TV and nap. The nurses also fuss over the kids during infusions and it's just one poke every so often.

Humira is a painful shot that is given every 2 weeks (can be given weekly). My girls like the convenience of it (you give it at home) but hated the shot because it hurts. They did learn to deal with it but still hated it. Remicade was definitely the preferred biologic at our house!

Biologics are actually quite safe - in fact, drugs like 6MP and Imuran scare me more (my daughter is currently on Imuran). My girls have never had side effects at all from biologics, besides a little tiredness after Remicade infusions. On the other hand, they both had issues with immunomodulators like Methotrexate and Imuran.

This is a good presentation about the risks and benefits of various IBD treatments: http://www.ccfa.org/news/do-ibd-treatments-cause.html

Good luck with whatever you choose!

Hi Maya,
I wrote a small book of a reply to you earlier, but I don't see it. I apologize. Give me some time to learn how this all works.

Wow, I'm so sorry you have two children with this disease. What a warrior you (all mamas) must be to be navigating all of this. Thank you for all of your advice!!! Currently we are using an all natural protein shake specifically for IBD recommended by our functional medicine Dr. She is loving that way more than the enterel feeding and the pediasures. She is maintaining the weight she previously put on and has in the past 3 months shown advancements in her puberty growth. Along with a slight increase in height, so I'm hopeful that she will soon be catching up with her peers.

 

[kimmidwife]

Hi Kim.
Welcome to the forum. We too were very scared of biologics at first but the more I read the. More I realized that the damage from untreated IBD is so much worse then the risks from the drugs. I know tons of kids who have done really well on them. Please keep us posted on whatever you decide.

 

[Mehita]

What specifically is scaring you about the biologics? Side effects? The administration of them? Just that they're strong meds?

I was afraid of the meds too. My son started on Pentasa, it didn't work. He ended up having a resection at the age of 12 and flared again three months later. He started Azathioprine and ended up in the hospital for the third time in a year with an abscess and fistula. Aza wasn't strong enough to control his disease. We finally started him on Remade and he's been in remission ever since... going on 2 1/2 years. He's living a normal teenager life and the only time he thinks about his Crohn's is when he goes in for his infusions. Seeing him now, I completely regret waiting so long to try Remicade. It was MY fear that caused him to get sicker and sicker until we had no choice but a biologic. I just want to encourage you really think about what it is you are afraid of with the meds and put it into perspective with what your daughter has/is going through.

It's not an easy decision and it breaks my heart to read about a new families struggling with these decisions. It sounds like your daughter needs some sort of change. Good luck with your decision.

 

[Jmrogers4]

Welcome,
My son like your daughter has the disease throughout his digestive tract. We were on Imuran (sister drug to 6MP) for years and thought we had the disease under control but he did not grow. We held off on remicade for 2 reasons, 1 I was scared (mostly to admit that my child needed it) and 2 we didn't think he needed it.
The only time he gained weight while on Imuran was when we supplemented with the nutritional formulas and when soon drop the majority of the weight gained. It was not until we basically threw our hands in the air saying something has to be done and let's go ahead and give remicade a try. It was a complete night and day difference for him he has grown about 10" in the last 2 years. His GI calls him the poster boy for remicade and regularly says I guess he really did need it.
Now I just dread the day we have to make a change and hope it continues to work for many years

 

[CrohnsKidMom]

Welcome to the forum. I'm another mom with a child on biologics. My son was dx'd at age 8, initially put on prednisone, tried imuran but couldn't tolerate it, then went on methotrexate injections for 2 yrs. It worked quite well, minus the nausea at injection. My son is now on Remicade as the MTX stopped working, and it has been a good experience. I was very apprehensive about the med, and the whole infusion experience seemed scary. But, if you were to ask my son if he prefers Remicade or weekly MTX injections at home, Remicade would win hands down. I know the potential side effects are scary, but like the others have said, you just have to do all you can to get the disease under control. Bless you as you make these hard decisions.

 

[positivemum]

Done Pentasa
Done steroids (prednisalone) twice
Done azathioprine

the difference came with remicade and we are 13 months on and going strong. It has given him his life back

Good luck

 

[pdx]

My 13 year old daughter has several things in common with yours. She was also really malnourished at diagnosis and also used an NG tube for 5 months to put on weight. She has continued to gain weight (without formula) since then, and is now almost 40 pounds heavier than she was a year ago. Her height didn't change much for the first 6 months, but she's grown 3 inches since then, and puberty is finally kicking in too.

Remicade (combined with methotrexate in her case) has worked well for her. It definitely scared us at first, but it's really been life-changing.

Good luck with whatever you decide to do--I know it's not easy!

 

[Jenn]

Yep, biologics are unnerving, but it's wonderful when they work. 6mp was not enough for my son and his GI was anti pred for kids, too many bad side effects. My son has been successfully on Humira 4 years so far.