My 14 year old son was diagnosed with CD in October 2012. He did 6 weeks of EN which improved his condition but not entirely. GI wanted to normalise things and after much agonising we agreed to a 6 week course of Budesonide (Entocort) combined with 2 Modulen shakes a day, first thing in the morning and last thing at night. This has worked well and recent bloodwork showed a normal CRP score plus normal levels of Haemoglobin etc. GI very happy with situation, son feeling energetic and healthy. GI now wants to deal with the ongoing maintenance meds and after much discussion etc he would like to go straight to Infliximab (Revellax/Remicade). I am have questioned (incessantly) the use of this drug at this stage, why not try out one of the milder treatments to start with? How does one know what one's own body is capable of doing if meds are pumped in straight away. This is a pretty recent diagnosis and my son's symptoms were always fairly mild, no diarrohea or obvious cramps, it was more like a silent attack. He was very anaemic and iron defficient, poor weight etc. So I feel so worried about pumping his body with such dramatic meds, even though I understand GI's wish to keep his system as healthy as possible. The situation after appointment with GI yesterday is that from today we start reducing dose of Budesonide and increase the Modulen formula to 3 a day. In the meantime we have done all the paperwork for insurance to apply for the Revellex, which can take up to a month to process. I know that most parents on this forum have these very issues with deciding on which meds and am hoping somebody can point me in the right direction. HELP!
Medication Advice Please
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That is a tough one! Docs do seem to be very divided on whether they use the strong drugs first or not. Our doc starts slow with the Aza, 6mp and then works up to the stronger biologics. However I have read a report on this forum saying there is good evidence to support hitting the Crohns hard at the start.
Good luck with this decision, unfortunately I don't believe there is one "right" answer.
Good luck with this decision, unfortunately I don't believe there is one "right" answer.
Welcome to the forum. I am sorry your son has been so sick but it's great that he has responded so well to the treatment plan the GI started him on. Did you talk to your GI about your worries and concerns? Did he offer an alternative treatment?
If you are very uncomfortable with his treatment plan, perhaps you should consider getting a 2nd opinion from a place that specializes in treating Pediatric IBD.
If it were me, knowing what I know now 7 years after my son's diagnosis at age 10, I would go straight to Remicade. It took almost two years of step up therapy for us to get to the point of starting him on Humira (another biologic similar to Remicade). Nothing short of a biologic (in my opinion and we tried lots of things including liquid formula diet) was enough.
The reason it took 2 years for us to get to starting a biologic was that I was scared of those meds and tried my best to keep my son off of them. AND I was ignorant about the effects of uncontrolled Crohn's, the damage that can happen with no outward evidence until the child is very sick, perhaps needing emergency surgery.
There was also very little research information about using these medications in adults let alone with children. That worried me too.
Now we have strong research evidence that supports using medications like 6-MP and Remicade right away. When used within the first 2 years of diagnosis, Remicade is much, much more likely to induce remission and the remission is more likely to be a sustained, solid remission.
I realize that it seems to you that your son wasn't that sick, that his symptoms were very mild. This is the bad thing about Crohn 's. It can seem like your child is just fine when inside his intestines are full of ulcers - big, deep, bleeding sores. Sections can be swollen nearly closed (called strictures). There can be fistulas develop which are tracks running from one part of the intestines to the skin, another organ, the perianal region that happen in the presence of continuing inflammation.
Because he feels better it is very tempting to think that he is now fine.
He is not fine. That is what the GI is telling you when he says your child needs to go on Remicade. GI's don't put every child they see on Remicade. Truly they don't. Your son's labs and condition must have been pretty bad at the time of his diagnosis. He has been on 6 weeks of Budesonide which is a powerful topical steroid. It calms the inflammation but it does not heal it. The fact that your son still needed Budesonide and additional partial EN after 6 weeks of exclusive EN (yes?) suggests to me that his gut was very, very inflamed and damaged.
That does not heal overnight. And the cause of the damage has to be addressed with some kind of maintenance treatment.
There are other approaches. You could talk with your GI about 6-MP (takes about 4 months to start working) which suppresses a different part of the immune system. You could ask about methotrexate (takes about 6+ weeks to start working and requires shots) but this has a lower success rate. He should not stay on Budesonide long term, it is a steroid and will damage his bones and delay his growth. LDN is a medication that is being studied in the US and some people on the forum have been able to get their children on the medication "off label". I don't know what your options for that would be in South Africa. There is Anti-MAAP treatment, again something that may or may not be available there. The evidence to support it is thin. Helminth therapy is another one - nearly impossible here in the US because we can't import the worms.
There are alternative practitioners - Chinese herbalists for example, who I have known people to turn to when they wanted to avoid the medications.
To be honest, none of the people I know of have had lasting success with any of these approaches and their children have all ended up on biologics.
Sorry this has been so long. I remember the agonizing process of making these choices. I expect that we will be faced with them again soon because I'm pretty sure my 17 yo son's quiet flare is turning from a low simmer to something stronger and he is going to have to go back on a biologic soon.
It's never easy. Do what you think best for your family and your child. Educate yourself as much as you can before you make your decisions so that you are making informed choices. And consider your son - he is at the peak period of his growth. If his growth has been delayed by his illness, now is the best time for him to catch up. But he won't do that while he's on Budesonide and he won't do it if his gut isn't healthy.
All the best.
If you are very uncomfortable with his treatment plan, perhaps you should consider getting a 2nd opinion from a place that specializes in treating Pediatric IBD.
If it were me, knowing what I know now 7 years after my son's diagnosis at age 10, I would go straight to Remicade. It took almost two years of step up therapy for us to get to the point of starting him on Humira (another biologic similar to Remicade). Nothing short of a biologic (in my opinion and we tried lots of things including liquid formula diet) was enough.
The reason it took 2 years for us to get to starting a biologic was that I was scared of those meds and tried my best to keep my son off of them. AND I was ignorant about the effects of uncontrolled Crohn's, the damage that can happen with no outward evidence until the child is very sick, perhaps needing emergency surgery.
There was also very little research information about using these medications in adults let alone with children. That worried me too.
Now we have strong research evidence that supports using medications like 6-MP and Remicade right away. When used within the first 2 years of diagnosis, Remicade is much, much more likely to induce remission and the remission is more likely to be a sustained, solid remission.
I realize that it seems to you that your son wasn't that sick, that his symptoms were very mild. This is the bad thing about Crohn 's. It can seem like your child is just fine when inside his intestines are full of ulcers - big, deep, bleeding sores. Sections can be swollen nearly closed (called strictures). There can be fistulas develop which are tracks running from one part of the intestines to the skin, another organ, the perianal region that happen in the presence of continuing inflammation.
Because he feels better it is very tempting to think that he is now fine.
He is not fine. That is what the GI is telling you when he says your child needs to go on Remicade. GI's don't put every child they see on Remicade. Truly they don't. Your son's labs and condition must have been pretty bad at the time of his diagnosis. He has been on 6 weeks of Budesonide which is a powerful topical steroid. It calms the inflammation but it does not heal it. The fact that your son still needed Budesonide and additional partial EN after 6 weeks of exclusive EN (yes?) suggests to me that his gut was very, very inflamed and damaged.
That does not heal overnight. And the cause of the damage has to be addressed with some kind of maintenance treatment.
There are other approaches. You could talk with your GI about 6-MP (takes about 4 months to start working) which suppresses a different part of the immune system. You could ask about methotrexate (takes about 6+ weeks to start working and requires shots) but this has a lower success rate. He should not stay on Budesonide long term, it is a steroid and will damage his bones and delay his growth. LDN is a medication that is being studied in the US and some people on the forum have been able to get their children on the medication "off label". I don't know what your options for that would be in South Africa. There is Anti-MAAP treatment, again something that may or may not be available there. The evidence to support it is thin. Helminth therapy is another one - nearly impossible here in the US because we can't import the worms.
There are alternative practitioners - Chinese herbalists for example, who I have known people to turn to when they wanted to avoid the medications.
To be honest, none of the people I know of have had lasting success with any of these approaches and their children have all ended up on biologics.
Sorry this has been so long. I remember the agonizing process of making these choices. I expect that we will be faced with them again soon because I'm pretty sure my 17 yo son's quiet flare is turning from a low simmer to something stronger and he is going to have to go back on a biologic soon.
It's never easy. Do what you think best for your family and your child. Educate yourself as much as you can before you make your decisions so that you are making informed choices. And consider your son - he is at the peak period of his growth. If his growth has been delayed by his illness, now is the best time for him to catch up. But he won't do that while he's on Budesonide and he won't do it if his gut isn't healthy.
All the best.
One more thing -
just because he goes on Remicade doesn't mean he will be on it forever.
My son was on Humira a little more than 3 years. He got into solid remission and then decided to stop. He was also on Methotrexate.
He had no problems for more than 2 years - until June of this year when he had a mini-flare that was treated with a small increase in his Methotrexate.
just because he goes on Remicade doesn't mean he will be on it forever.
My son was on Humira a little more than 3 years. He got into solid remission and then decided to stop. He was also on Methotrexate.
He had no problems for more than 2 years - until June of this year when he had a mini-flare that was treated with a small increase in his Methotrexate.
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Second the remicade
Our Gi does more of a step on mild cases but moves straight to remicade on more severe cases . We did step up over a year and finally got relief with remicade .
Look at the pediatric research section lots of papers on treatment and biologics
Our Gi does more of a step on mild cases but moves straight to remicade on more severe cases . We did step up over a year and finally got relief with remicade .
Look at the pediatric research section lots of papers on treatment and biologics
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It certainly is hard to accept that our children may need these meds. 
I am in the same situation as you; my son used exclusive EN to induce remission and this has been his maintenance treatment (formula plus regular diet) for over a year now. However, he recently transferred to an adult GI and his new GI wants him to start on remicade.
My son is also showing virtually no symptoms, has gained tons of weight, grown in height, tons of energy, no CD symptoms, etc., however, MREs do show continued inflammation.
His GI is adamant that the continued inflammation will eventually cause more serious issues, his words were something to the effect that my son is a young man and will need his small bowel for a long time, remicade will keep him at his best and with these meds available, there's no reason to risk his well-being.
My son is having scopes done next week and, unless something drastically different shows up (which I'm not expecting), we will be moving ahead with remicade. I am still not completely comfortable with this and wish we had the opportunity to work our way up the meds, however, my son wants to start on remicade as he is afraid of the risks of untreated or undertreated crohns. As my son is 18 and he is the one who will suffer the consequences, I'm not at all comfortable in trying to convince him to NOT follow the doctor's recommendation and risk his well-being because of what may be mainly my own (unjustified??) fears.
Having said all this, there are many, many remicade success stories! And, as was mentioned above, eliminating the inflammation asap and using the biologics early, does seem to bring the greatest success. And, I am trying to look at it from the point that, if we are going to have to use these meds at some point in his lifetime (which seems likely), we may as well use them when they will be most effective.
I'm not sure if this is a glowing recommendation :redface: but it is how I have come to terms with the GI's recommendation.
My heart goes out to you making these tough decisions. :ghug:
I am in the same situation as you; my son used exclusive EN to induce remission and this has been his maintenance treatment (formula plus regular diet) for over a year now. However, he recently transferred to an adult GI and his new GI wants him to start on remicade. My son is also showing virtually no symptoms, has gained tons of weight, grown in height, tons of energy, no CD symptoms, etc., however, MREs do show continued inflammation.
His GI is adamant that the continued inflammation will eventually cause more serious issues, his words were something to the effect that my son is a young man and will need his small bowel for a long time, remicade will keep him at his best and with these meds available, there's no reason to risk his well-being.
My son is having scopes done next week and, unless something drastically different shows up (which I'm not expecting), we will be moving ahead with remicade. I am still not completely comfortable with this and wish we had the opportunity to work our way up the meds, however, my son wants to start on remicade as he is afraid of the risks of untreated or undertreated crohns. As my son is 18 and he is the one who will suffer the consequences, I'm not at all comfortable in trying to convince him to NOT follow the doctor's recommendation and risk his well-being because of what may be mainly my own (unjustified??) fears.
Having said all this, there are many, many remicade success stories! And, as was mentioned above, eliminating the inflammation asap and using the biologics early, does seem to bring the greatest success. And, I am trying to look at it from the point that, if we are going to have to use these meds at some point in his lifetime (which seems likely), we may as well use them when they will be most effective.
I'm not sure if this is a glowing recommendation :redface: but it is how I have come to terms with the GI's recommendation.
My heart goes out to you making these tough decisions. :ghug:
kiny
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I feel they should test people before administering infliximab, the risks of serious side effects are low, but they are there in some people. Testing before the use of infliximab would greatly reduce these risks.
What can happen with infliximab or humira in rare cases is that you have let's say a certain number of T cells in someones body.
And let's say of those T cells a handful of them are malignant γδ T cells, in an immunocompetent person those malignant γδ T cells will be destroyed and that will be the end of it.
But what infliximab or humira does is causes changes in T cels, for example it might upregulate γδ T cells, in a person without malignant γδ T cells this isn't an issue, but if you have malignant γδ T cells infliximab and humira will cause a rapid growth in those specific γδ T cells in some people, and at the same time the immune system will be severely immunosupressed and won't be able to deal with this and that's how in rare cases some people develop lymphoma.
Hope this helps explain it a bit. The reason this is different in younger people and why they warn a bit more for younger people is because of specific differences very young children have in T cell and other white blood cells that predispose them to a greater chance of rapidly expanding malignant cells.
What can happen with infliximab or humira in rare cases is that you have let's say a certain number of T cells in someones body.
And let's say of those T cells a handful of them are malignant γδ T cells, in an immunocompetent person those malignant γδ T cells will be destroyed and that will be the end of it.
But what infliximab or humira does is causes changes in T cels, for example it might upregulate γδ T cells, in a person without malignant γδ T cells this isn't an issue, but if you have malignant γδ T cells infliximab and humira will cause a rapid growth in those specific γδ T cells in some people, and at the same time the immune system will be severely immunosupressed and won't be able to deal with this and that's how in rare cases some people develop lymphoma.
Hope this helps explain it a bit. The reason this is different in younger people and why they warn a bit more for younger people is because of specific differences very young children have in T cell and other white blood cells that predispose them to a greater chance of rapidly expanding malignant cells.
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kiny
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They don't test this atm, but I personally feel that they should test for example specific to T cell, which T cells a person has and determine the risks based on this. Currently the risks are known to be higher in children than in adults and these risks are related to the composition of white blood cells. I feel they should test beforehand who is at risk, but they don't do this atm.
There's also some differences in immunity in children and adults, some cells that protect against cancers like natural killer cells are different than in adults etc. This is also why children get more viral infections than adults.
I feel they should more tightly be aware of these risks and base decisions on an individual level instead of playing a dart game and hoping for the best.
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Robs A,
My 19 year old son has been on budesonide and LDN since diagnosis in May. His doctor, an adult GI, head of an IBD program, said he had some patients who did well on budesonide for years. The study I saw showed budesonide working less than a year on average in Crohn's patients. My son will have an MRE soon and will reassess.
I hear lots of Crohn's forum parents voting for Remicade. Children seem to have more aggressive Crohn's than adults and once some damage is done (strictures, or fistulas), treatment becomes more difficult. Has your son has small bowel imaging (MRE) to know what's going on there?
Some people with Crohn's will have a mild course. This seems to be more common in adults than children. The problem is that doctors don't know how to identify these mild Crohn's cases at diagnosis. Ok they can know Crohn's is severe if a patient presents with stricturing or extensive disease at diagnosis but for someone who presents with milder symptoms and improves with a "mild" medication, it's uncertain what the future course of Crohn's will be. (Did your doctor tell you if your son had mild/mod/severe disease at diagnosis? Your son's anemia and poor growth are concerning, even though he didn't have much in the way of gi symptoms. ) Clearly improved disease prognostication is necessary to avoid treating individuals who would have a mild course with drugs with potentially serious side effects. (I think that there is a tendency of doctors to minimize the adverse effects-- just my opinion here.) At this time, it feels like a guessing game though hopefully doctors' guesses are educated ones. Definitely share your concerns with your doctor and I wouldn't hesitate to get a second opinion if you need one.
Best wishes!
Kiny-- are you referring to this http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017890?
My 19 year old son has been on budesonide and LDN since diagnosis in May. His doctor, an adult GI, head of an IBD program, said he had some patients who did well on budesonide for years. The study I saw showed budesonide working less than a year on average in Crohn's patients. My son will have an MRE soon and will reassess.
I hear lots of Crohn's forum parents voting for Remicade. Children seem to have more aggressive Crohn's than adults and once some damage is done (strictures, or fistulas), treatment becomes more difficult. Has your son has small bowel imaging (MRE) to know what's going on there?
Some people with Crohn's will have a mild course. This seems to be more common in adults than children. The problem is that doctors don't know how to identify these mild Crohn's cases at diagnosis. Ok they can know Crohn's is severe if a patient presents with stricturing or extensive disease at diagnosis but for someone who presents with milder symptoms and improves with a "mild" medication, it's uncertain what the future course of Crohn's will be. (Did your doctor tell you if your son had mild/mod/severe disease at diagnosis? Your son's anemia and poor growth are concerning, even though he didn't have much in the way of gi symptoms. ) Clearly improved disease prognostication is necessary to avoid treating individuals who would have a mild course with drugs with potentially serious side effects. (I think that there is a tendency of doctors to minimize the adverse effects-- just my opinion here.) At this time, it feels like a guessing game though hopefully doctors' guesses are educated ones. Definitely share your concerns with your doctor and I wouldn't hesitate to get a second opinion if you need one.
Best wishes!
Kiny-- are you referring to this http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017890?
kiny - I agree with you that it would be ideal to have that level of evaluation before starting a patient on biologics.
There are a whole bunch of people looking at this from lots of different angles. Some have come up with tests - often genetic - that appear to be reasonably reliable and valid for predicting things like response or non-response to anti-TNF alpha meds. I haven't seen or heard of any that are ready to move from the bench to the bedside but maybe kiny knows of one that is.
The problem is who will pay for it?
First pay for large scale trials to prove it's accurate and can be effectively deployed in the clinical setting.
Second who will pay the cost to do the testing itself? Insurance companies? only if there is very strong evidence to show that they will save a lot of $$ and it will produce a change of treatment in a large population or that it will prevent very serious injury/death.
On the other hand, if someone can bring this to the clinical setting in a cost effective and accurate way at a reasonable cost/case then it may become a standard part of the diagnostic process.
I am skeptical that we will see this any time soon. Unfortunately.
But ya never know.
There are a whole bunch of people looking at this from lots of different angles. Some have come up with tests - often genetic - that appear to be reasonably reliable and valid for predicting things like response or non-response to anti-TNF alpha meds. I haven't seen or heard of any that are ready to move from the bench to the bedside but maybe kiny knows of one that is.
The problem is who will pay for it?
First pay for large scale trials to prove it's accurate and can be effectively deployed in the clinical setting.
Second who will pay the cost to do the testing itself? Insurance companies? only if there is very strong evidence to show that they will save a lot of $$ and it will produce a change of treatment in a large population or that it will prevent very serious injury/death.
On the other hand, if someone can bring this to the clinical setting in a cost effective and accurate way at a reasonable cost/case then it may become a standard part of the diagnostic process.
I am skeptical that we will see this any time soon. Unfortunately.
But ya never know.
DustyKat
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It is the most difficult of times when you have choices and the most heartbreaking when those choices are taken away.
It surely is difficult to make decisions under these circumstances Robs a. You are trying to treat something you can't see and you do not have the advantage of previous experience to guide you. All our stories and journey's are different and that is where it becomes imperative that you have trust and faith in your doctor to guide you or you seek further opinions. Couple that with the knowledge you gather and your instinct.
I have been down this path twice. The first time was fast and brutal and I knew nothing the second time i was in a much better position to be dealing with things. It didn't lessen the fear though and as the treatments came and went one fear replaced another. A fear of Prednisone became a fear of Imuran which became a fear of Humira which became a fear of surgery.
Both of my children ended up with surgery. When Sarah was the only one diagnosed I often wondered what her life would have been like if she had had the opportunity to try medication first. Then a few years down the track my son was diagnosed. It was a very quick diagnosis and he started the meds, we never did get to the biologics as complications set in. I have thought long and hard about this and although both of my children have had wonderful outcomes from surgery I would still have preferred they did not have it in the first place. I would take a biologic over surgery any day.
If you have time on your side then continue to research and question and above all don't become so entrenched in one way of thought that you continue to pursue a treatment that is clearly not working. Be honest with what you see in front of you and be prepared to change tack if need be.
Good luck with whatever you choose!
Dusty. xxx
It surely is difficult to make decisions under these circumstances Robs a. You are trying to treat something you can't see and you do not have the advantage of previous experience to guide you. All our stories and journey's are different and that is where it becomes imperative that you have trust and faith in your doctor to guide you or you seek further opinions. Couple that with the knowledge you gather and your instinct.
I have been down this path twice. The first time was fast and brutal and I knew nothing the second time i was in a much better position to be dealing with things. It didn't lessen the fear though and as the treatments came and went one fear replaced another. A fear of Prednisone became a fear of Imuran which became a fear of Humira which became a fear of surgery.
Both of my children ended up with surgery. When Sarah was the only one diagnosed I often wondered what her life would have been like if she had had the opportunity to try medication first. Then a few years down the track my son was diagnosed. It was a very quick diagnosis and he started the meds, we never did get to the biologics as complications set in. I have thought long and hard about this and although both of my children have had wonderful outcomes from surgery I would still have preferred they did not have it in the first place. I would take a biologic over surgery any day.
If you have time on your side then continue to research and question and above all don't become so entrenched in one way of thought that you continue to pursue a treatment that is clearly not working. Be honest with what you see in front of you and be prepared to change tack if need be.
Good luck with whatever you choose!
Dusty. xxx
