Why the push for Biologics?
- Thread starter OmShiv
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Mostly because changes in diet usually don't do much. EEN is the one dietary intervention that does a lot, but people normally don't want to do that indefinitely and usually the inflammation comes back when people stop doing it. EEN is a great tool in the Crohn's arsenal, though.
Because right now biologics seem to be the best defense to helping stop or reduce active inflammation that can cause more problems if not dealt with. I don't think it's about getting a commission or doctors trying to profit from people with Crohn's. Active inflammation, if not dealt with, can cause other problems. My son also has arthritis as a result of Crohn's being unchecked. So, keep an open mind - diet still can play a role in it but it's typically not enough in most cases to stop the disease.
I believe biologics are being used more and more because of the results. When I was first looking at a biologic, I was told by my doctor I 'wasn't sick enough' even though I had developed fistulizing disease...I dealt with those for close to 2 years before finally getting the approval to start Remicade, which was a game-changer. I've been able to stay out of the hospital now for over 17 years, before starting Remicade I had been averaging a stay every few years due to my symptoms...which kept getting worse and breaking through medications (I've had Crohn's for over 40 years now).
Just something to think about.....do you want your child/family member/loved one to go through the progression of the disease as medications maybe work, work a little, don't work...and continually have to go to bigger and stronger ones, or use something that has the potential to stop things in its' track and avoid many complications....just something to think about.
Just something to think about.....do you want your child/family member/loved one to go through the progression of the disease as medications maybe work, work a little, don't work...and continually have to go to bigger and stronger ones, or use something that has the potential to stop things in its' track and avoid many complications....just something to think about.
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That's not true. Doctors list disclosures on most hospital websites. They may advise a pharmaceutical company that makes a biologic, but that doesn't mean they get "a cut off every medication they provide." Also, in our experience, pediatric specialists are much less likely to be working with pharmaceutical companies - some certainly do, but not every single one. And they tend to advise fewer pharmaceutical companies than adult doctors.
Not in the US. To get a cut of the medications they prescribe would be an illegal kick-back - a felony in the US.
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Get a second opinion if you don’t agree
But realize if they are recommending biologics then your child is not in the mild category
Un treated or under treated Crohn’s disease can do a lot of damage
Prior to biologics /immunosuppressants
There were things like prednisone and more prednisone
Which led to kids with diabetes /osteoporosis/cataracts/stunted growth
kids are not mini adults
Een works but is used as a means to give meds time to work
Biologics can range from 6 weeks to 3 months to work fully
my child has been on biologics for 11 years (he is an adult now but was dx at age 7)
No issues
Just a nice pink healthy colon
he did een 2-3 times
Easiest at age 7 for 9 weeks
Harder as a teen
Tried a ton of different diets as well as adjunct therapy over the years
Never did much
Still on biologics now
damaged intestines can’t be fixed once there is scar tissue.
Ask your childs doc why
What they used to see in colectomy when they had to take out the colon or did surgery for strictures ? Before biologics in kids
Prior to biologics 75% of kids diagnosed with Crohn’s disease had to have surgery within 5 years of dx
This was the stat we were told at age 7
That is no longer the case
ask your questions
We have all been there at one time or another
It’s an ugly disease
But it can be held at bay for most kids with the right drug .
Which drug will work depends on your child
They say this drug will be for life
If you get 10 years out of a single drug count your blessings
We got 8 months on the first one that was “for life”
good luck
But realize if they are recommending biologics then your child is not in the mild category
Un treated or under treated Crohn’s disease can do a lot of damage
Prior to biologics /immunosuppressants
There were things like prednisone and more prednisone
Which led to kids with diabetes /osteoporosis/cataracts/stunted growth
kids are not mini adults
Een works but is used as a means to give meds time to work
Biologics can range from 6 weeks to 3 months to work fully
my child has been on biologics for 11 years (he is an adult now but was dx at age 7)
No issues
Just a nice pink healthy colon
he did een 2-3 times
Easiest at age 7 for 9 weeks
Harder as a teen
Tried a ton of different diets as well as adjunct therapy over the years
Never did much
Still on biologics now
damaged intestines can’t be fixed once there is scar tissue.
Ask your childs doc why
What they used to see in colectomy when they had to take out the colon or did surgery for strictures ? Before biologics in kids
Prior to biologics 75% of kids diagnosed with Crohn’s disease had to have surgery within 5 years of dx
This was the stat we were told at age 7
That is no longer the case
ask your questions
We have all been there at one time or another
It’s an ugly disease
But it can be held at bay for most kids with the right drug .
Which drug will work depends on your child
They say this drug will be for life
If you get 10 years out of a single drug count your blessings
We got 8 months on the first one that was “for life”
good luck
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The push for biologics is simply because they work best. Kids tend to have worse prognosis than adults - pediatric IBD can be aggressive and it can spread to different parts of the bowel (for example, a young child may initially have colonic disease and over time it may spread to small bowel, whereas in adults, it tends to stay in the same place as where it is diagnosed). They also face complications adults do not - with growth and development. So pediatric GIs aim to get the disease under control quickly, so the child can grow and develop normally. The window of growth is short, so if your child is a teen, your GI probably wants to get the disease under control so he or her can grow to their full potential. In addition to growth, there’s also bone density that they track and of course regular development.
My daughter was very underweight for a while and her bone density became very low - she was so malnourished. Luckily, she was young enough that she was able to gain bone density as she gained weight (which she did using supplemental formula and an otherwise relatively normal diet). But had she been older, by even a few years, she may not have been able to regain that bone density and would have had osteopenia for life.
The best diet for IBD is EEN - only formula, NO food. That is used to induce remission and it certainly works very well - it’s usually used for 6-8 weeks. But it is hard on kids and continuing it indefinitely is not possible for most kids. My daughter found it extremely hard as a teenager and as a young adult. Supplemental formula was easier - that was in addition to food and that helped her gain weight.
All of us are afraid of the meds when our children are diagnosed, but what we quickly realized is that the disease is far scarier than the medications. Damage to the intestines is permanent and complications like strictures, fistulae and abscesses often require surgery and hospitalizations. The goal is to get control of the disease before it causes those complications and honestly, biologics are the best meds to do that. The alternative is immunomodulators, 6MP, which isn’t used in teen boys in particular because it can cause a very rare type of cancer and Methotrexate, which is a good med, but comes with more side effects and works much more slowly than biologics. Both my daughters have been on biologics for over 10 years and both would say that going on biologics was completely life-changing and the best decision we ever made.
My daughter was very underweight for a while and her bone density became very low - she was so malnourished. Luckily, she was young enough that she was able to gain bone density as she gained weight (which she did using supplemental formula and an otherwise relatively normal diet). But had she been older, by even a few years, she may not have been able to regain that bone density and would have had osteopenia for life.
The best diet for IBD is EEN - only formula, NO food. That is used to induce remission and it certainly works very well - it’s usually used for 6-8 weeks. But it is hard on kids and continuing it indefinitely is not possible for most kids. My daughter found it extremely hard as a teenager and as a young adult. Supplemental formula was easier - that was in addition to food and that helped her gain weight.
All of us are afraid of the meds when our children are diagnosed, but what we quickly realized is that the disease is far scarier than the medications. Damage to the intestines is permanent and complications like strictures, fistulae and abscesses often require surgery and hospitalizations. The goal is to get control of the disease before it causes those complications and honestly, biologics are the best meds to do that. The alternative is immunomodulators, 6MP, which isn’t used in teen boys in particular because it can cause a very rare type of cancer and Methotrexate, which is a good med, but comes with more side effects and works much more slowly than biologics. Both my daughters have been on biologics for over 10 years and both would say that going on biologics was completely life-changing and the best decision we ever made.
Doctors push biologics because they are they are the surest way to get the Crohn's under control. The biggest threat to the health of Crohn's patients is not the side effects of medications. The biggest health threat that Crohn's patients face is the serious illness and permanent damage caused by uncontrolled or poorly-controlled Crohn's disease.
The potential serious side effects of biologics are real but very rare. The potential serious bad effects of poorly-controlled Crohn's disease are very real and very common.
The potential serious side effects of biologics are real but very rare. The potential serious bad effects of poorly-controlled Crohn's disease are very real and very common.
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crohnsinct
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Adding to the chorus on why biologics are suggested as first line of defense.
Also wanted to add that we tried diets with both of my girls. I feel like we tried them all. With one daughter we tried them as first line of defense. She had mild Crohn’s so our GI let us try diet exclusively at the beginning. We tried IBD-Aid under the guidance of the docs and RD’s who developed it. She was 11 at the time and we were VERY strict with the diet. Her disease progressed. We tried CDED and her disease progressed. She then went in an immunomodulator because we felt we weren’t ready for the “big guns”. She couldn’t get to remission. We then did a course of EEN and added Remicade and she got into remission, started gaining weight and first the first time was pain free and carefree. She has been in Remicade for 8 years and doing great. She has been losing response and we are clinging to it trying lots of things to make it work. It’s funny how the drugs you were so scared of you eventually love and hate to lose.
My other daughter has severe disease so fiddling with diet wasn’t a choice but no meds worked for her so we used diet yo help the meds out. She has done them all including SCD. SCD and CDED are closely related and the ones with the best research. There are many people who are able to get to remission on them but the success rate is very very low when compared with biologics. Add to this, teens are not as highly motivated to stick to a strict diet as we would like them to be and many “cheat”. Also if looking to go away to college it could be difficult. Not impossible but definitely an added challenge when you are already dealing with a major life change.
Also wanted to add that we tried diets with both of my girls. I feel like we tried them all. With one daughter we tried them as first line of defense. She had mild Crohn’s so our GI let us try diet exclusively at the beginning. We tried IBD-Aid under the guidance of the docs and RD’s who developed it. She was 11 at the time and we were VERY strict with the diet. Her disease progressed. We tried CDED and her disease progressed. She then went in an immunomodulator because we felt we weren’t ready for the “big guns”. She couldn’t get to remission. We then did a course of EEN and added Remicade and she got into remission, started gaining weight and first the first time was pain free and carefree. She has been in Remicade for 8 years and doing great. She has been losing response and we are clinging to it trying lots of things to make it work. It’s funny how the drugs you were so scared of you eventually love and hate to lose.
My other daughter has severe disease so fiddling with diet wasn’t a choice but no meds worked for her so we used diet yo help the meds out. She has done them all including SCD. SCD and CDED are closely related and the ones with the best research. There are many people who are able to get to remission on them but the success rate is very very low when compared with biologics. Add to this, teens are not as highly motivated to stick to a strict diet as we would like them to be and many “cheat”. Also if looking to go away to college it could be difficult. Not impossible but definitely an added challenge when you are already dealing with a major life change.
Monitor closely. It's hard to commit to any treatment if your heart is not in it. Have an open discussion with your doctor. Ask for frequent testing (usually monthly calpro and IUS during each visit if it's accessible + growth check) and agree to switch the treatment if the inflammation progresses. You will be able to see, objectively, which treatment works for you with your doctor's support.
I don't know your circumstance but I can appreciate your hesitation about the risks of biologics.
As for the kickbacks... the hospital is a business i.e. it's a for-profit model. They are very mindful of money coming in and out. In this case tho, I would focus on what is best for your son's disease regardless of what the other hand is doing. There needs to be a win-win in this situation and it takes a bit of time to get to that point.
I don't know your circumstance but I can appreciate your hesitation about the risks of biologics.
As for the kickbacks... the hospital is a business i.e. it's a for-profit model. They are very mindful of money coming in and out. In this case tho, I would focus on what is best for your son's disease regardless of what the other hand is doing. There needs to be a win-win in this situation and it takes a bit of time to get to that point.
