My son was diagnosed in June. We started with Apriso, Ranitidine, and Budesonide. It helped at first but is slowly starting to fade. They told us Remicade would be better. After reading all the cancer warnings I am scared to death to give it to him. He is 15. Has anyone has good luck with diet or anything else not so scary. Thanks
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Doc wants son on remicade
- Thread starter Snoopy
- Start date
nogutsnoglory
Moderator
Unfortunately those side effects are real and can occur but keep in mind its pretty rare and the drug is safe otherwise it never would have been approved. The doctor decided the benefit outweighs the risk. Diet alone in my opinion is not enough for aggressive crohns. There are lots of radical diets and natural options and I tried several. I find it to be Russian Roulette and potentially risking allowing the disease to progress to a worse state. I don't want to scare you I simply want what's best for your son to thrive.
Thanks nogutsnoglory! Did I post that right? It is my fist time. I appreciate your advice. It just goes against my gut to put him on that. I have tried to give my kids organic food and keep everyone healthy and now here I am going to put something like that in him. It just makes me sick...
nogutsnoglory
Moderator
Snoopy your reply was just fine. I totally understand, I also believe in organic eating/living. I have only ate mainly organic for over a decade but I'm in the worst shape of my life. Not because of organic foods but because this disease is vicious and has a mind of its own. I tried everything and like you the drugs scare me and I hate them but to be honest I need them and its counterintuitive because in some ways its poison and in others a blessing.
It is my belief that many who find remission naturally ultimately plummet and have no choice but to go back on meds. You hear the success stories but generally don't hear the failure ones where people say it didn't work and I need meds now. Also keep in mind the disease severity is a big factor. Mild to moderate IBD may be more manageable but with those like me with severe IBD there is risk playing around. I learned the hard way.
It is my belief that many who find remission naturally ultimately plummet and have no choice but to go back on meds. You hear the success stories but generally don't hear the failure ones where people say it didn't work and I need meds now. Also keep in mind the disease severity is a big factor. Mild to moderate IBD may be more manageable but with those like me with severe IBD there is risk playing around. I learned the hard way.
Well we see a doctor here in Jacksonville at Nemours. I have been very impressed so far. I was O.K. with it until I got on here and read the horror stories about people getting cancer. He is supposed to get his first dose Thursday morning. I have emailed the doctor my concerns and to see if there is anything else we can try first. My mom and I both have autoimmune diseases (not Crohns) it has always been a pain, but nothing as dramatic as what he is going through. I guess we will just have to wait and see.... I was just hoping someone on here would have some miracle plan for us to try. 
Hi Snoopy welcome to the forum, sorry you found a need to seek us out and that your son is needs a med change.
5ASAs like apriso have been found not to be very effective with CD, so we do have a lot of members that have had to switch meds and move up the pyramid. There are other options before Remicade like the immunosuppressants, 6MP/AZA(thioprines) or methotrexate. It can take 12 week's for the thioprines to reach therapeutic levels and 6 weeks for methotrexate. There are also risks with these meds concerning side effects. You get frequent blood work to help ensure you are on top of things.
My son was dx'ed at 15, we went straight to Remicade, the results were immediate. But after the loading doses his symptoms would return before the next infusion so we upped the dose, tweaked the schedule and eventually added MTX(methotrexate). His fecal calprotectin results were normal two months ago and he has been feeling great for several months. He has been taken off the MTX. He'll be 17 this month and is back to all his normal teenage activities. The side effects scared me too but not as bad as the uncontrolled damage that CD was causing as well as the fact that he never felt well and was unable to just be a teen.
Some members have tried diets like SCD and paleo with and without meds. We have a diet section you may want to check out.
Whatever your decision I hope your son reaches remission soon!
5ASAs like apriso have been found not to be very effective with CD, so we do have a lot of members that have had to switch meds and move up the pyramid. There are other options before Remicade like the immunosuppressants, 6MP/AZA(thioprines) or methotrexate. It can take 12 week's for the thioprines to reach therapeutic levels and 6 weeks for methotrexate. There are also risks with these meds concerning side effects. You get frequent blood work to help ensure you are on top of things.
My son was dx'ed at 15, we went straight to Remicade, the results were immediate. But after the loading doses his symptoms would return before the next infusion so we upped the dose, tweaked the schedule and eventually added MTX(methotrexate). His fecal calprotectin results were normal two months ago and he has been feeling great for several months. He has been taken off the MTX. He'll be 17 this month and is back to all his normal teenage activities. The side effects scared me too but not as bad as the uncontrolled damage that CD was causing as well as the fact that he never felt well and was unable to just be a teen.
Some members have tried diets like SCD and paleo with and without meds. We have a diet section you may want to check out.
Whatever your decision I hope your son reaches remission soon!
Kev
Senior Member
- Location
- Halifax, NS, Canada
I have had great luck with LDN (Low dose Naltrexone). If you have already started on Remicade, then stick with it. My understanding is that if for any reason, one starts on Remicade... but discontinues it.. the chances of successfully going back on it are slim.
As for LDN, the problem with it is finding a doctor who will prescribe it. It has NOT been FDA approved for treating IBD. Many are hoping that approval will come sometime next year. Despite that, it is legal and ethical for doctors to prescribe it.. the practice of doing so is referred to as 'off label' or 'off patent' prescribing. However, most doctors are reluctant to take this course. As for the treatment itself, it is perhaps the safest option out there. In a Norwegian documentary posted elsewhere on this forum, a doctor in Dublin, Ireland, who has been prescribing it for quite some time described it as being safer than taking an aspirin. In Norway, it has been used for many diseases for over a decade. I've been on it since November of 2007, so this year will mark my 6th anniversary.. and the only side effect I personally ever experienced was vivid dreams. It can cause some to have sleep disruptions, or experience a feeling of being 'wired'. If you can get a prescription... then you need to find a competent pharmacy to compound it... when I started on it, there were only 6 in North America, and only 1 in Canada. Now there are 3 right here in Halifax. But the knowledge, awareness and use of LDN has been slow to spread. Lack of FDA approval, doctors reluctance, and limited compound pharmacies are the issues. If these do not discourage you, then this is what you might expect. Try LDN on your son. If he is within the majority of people who've tried it, then you should expect to see a slow, almost imperceptable improvement over the span of 12 weeks. LDN does not produce immediate results. It is not a eureka pill. But, when it does kick in, and the healing commences... the results are definite, and improvement seems to continue and continue to a point where it is almost as if the disease had never happened. It can't undo the damage done by the disease, scar tissue is permanent, but otherwise... that little pill can force, and keep, the disease in a state of 'retirement'.
Anyway, this is not a sales pitch. LDN saved my life, and I feel I owe it to others to tell folks about it. It is not snake oil, it is not voodoo, it is medical science with a pedigree of having been used to treat a variety of diseases (auto-immune related) for a decade.
2 adult studies, and 1 pediatric study have shown it is a SAFE, effective treatment for IBD.
As for LDN, the problem with it is finding a doctor who will prescribe it. It has NOT been FDA approved for treating IBD. Many are hoping that approval will come sometime next year. Despite that, it is legal and ethical for doctors to prescribe it.. the practice of doing so is referred to as 'off label' or 'off patent' prescribing. However, most doctors are reluctant to take this course. As for the treatment itself, it is perhaps the safest option out there. In a Norwegian documentary posted elsewhere on this forum, a doctor in Dublin, Ireland, who has been prescribing it for quite some time described it as being safer than taking an aspirin. In Norway, it has been used for many diseases for over a decade. I've been on it since November of 2007, so this year will mark my 6th anniversary.. and the only side effect I personally ever experienced was vivid dreams. It can cause some to have sleep disruptions, or experience a feeling of being 'wired'. If you can get a prescription... then you need to find a competent pharmacy to compound it... when I started on it, there were only 6 in North America, and only 1 in Canada. Now there are 3 right here in Halifax. But the knowledge, awareness and use of LDN has been slow to spread. Lack of FDA approval, doctors reluctance, and limited compound pharmacies are the issues. If these do not discourage you, then this is what you might expect. Try LDN on your son. If he is within the majority of people who've tried it, then you should expect to see a slow, almost imperceptable improvement over the span of 12 weeks. LDN does not produce immediate results. It is not a eureka pill. But, when it does kick in, and the healing commences... the results are definite, and improvement seems to continue and continue to a point where it is almost as if the disease had never happened. It can't undo the damage done by the disease, scar tissue is permanent, but otherwise... that little pill can force, and keep, the disease in a state of 'retirement'.
Anyway, this is not a sales pitch. LDN saved my life, and I feel I owe it to others to tell folks about it. It is not snake oil, it is not voodoo, it is medical science with a pedigree of having been used to treat a variety of diseases (auto-immune related) for a decade.
2 adult studies, and 1 pediatric study have shown it is a SAFE, effective treatment for IBD.
We used remicade for DS.
It was a small miracle
Keep the risks into prospective.
Children have a 1 in 250 risk of dying in a car accident
But you still let them ride in a car
Swimming 1 in 1000 risk of drowning ( even if they know how to swim)
Average person has a risk of 2 in 10,000 of contracting T cell lymphoma
By adding a drug like remicade the risk is only 4 in 10000.
That says it can be scary but finding a drug that works for your child is more precious than gold.
Since what works for one kid may not work for the next .
There is no rhythm or reason.
We loved remicade since it gave us our child back to where he was prior to Ibd.
Unfortunately he developed an allergic reaction to it ( he is very atopic to begin with)
I only wish he could still take it.
It was a small miracle
Keep the risks into prospective.
Children have a 1 in 250 risk of dying in a car accident
But you still let them ride in a car
Swimming 1 in 1000 risk of drowning ( even if they know how to swim)
Average person has a risk of 2 in 10,000 of contracting T cell lymphoma
By adding a drug like remicade the risk is only 4 in 10000.
That says it can be scary but finding a drug that works for your child is more precious than gold.
Since what works for one kid may not work for the next .
There is no rhythm or reason.
We loved remicade since it gave us our child back to where he was prior to Ibd.
Unfortunately he developed an allergic reaction to it ( he is very atopic to begin with)
I only wish he could still take it.
Kev
Senior Member
- Location
- Halifax, NS, Canada
Bear in mind, that going with LDN does have some risk. There is a chance it won't work on your child. That holds true with any drug a doctor might propose. However, the odds of success with LDN are pretty high. No, the big risk is that pursuing LDN may just jeopardize your relationship with your doctor. It shouldn't be that way, but it can/does happen. Get past that hurdle, and it does work in his case, then you have a treatment that offers virtually no known risk (medically/chemically speaking) to him over the long haul.
Hi snoopy
I feel exactly like you. My daughter is 16 and has been on LDN for over a year. She was dx when she was 14, every doctor pushed for apriso, imuran, humira and remicade, not to mention the months of prednisone. i haven't ran into a GI yet that knows about LDN. After studying LDN for months i found a medical doctor that prescribed it for her. She's still has a few bumps here and there but she's so much better today thanks to LDN. LDN was the only way she finally got of the steroids. I'm not saying we'll never go the humira or remicade route but I defiantly wanted to try LDN first. It took a good 6 months before her blood work started showing improvement. I hope your son feels better soon.
I feel exactly like you. My daughter is 16 and has been on LDN for over a year. She was dx when she was 14, every doctor pushed for apriso, imuran, humira and remicade, not to mention the months of prednisone. i haven't ran into a GI yet that knows about LDN. After studying LDN for months i found a medical doctor that prescribed it for her. She's still has a few bumps here and there but she's so much better today thanks to LDN. LDN was the only way she finally got of the steroids. I'm not saying we'll never go the humira or remicade route but I defiantly wanted to try LDN first. It took a good 6 months before her blood work started showing improvement. I hope your son feels better soon.
Hi snoopy
I feel exactly like you. My daughter is 16 and has been on LDN for over a year. She was dx when she was 14, every doctor pushed for apriso, imuran, humira and remicade, not to mention the months of prednisone. i haven't ran into a GI yet that knows about LDN. After studying LDN for months i found a medical doctor that prescribed it for her. She's still has a few bumps here and there but she's so much better today thanks to LDN. LDN was the only way she finally got of the steroids. I'm not saying we'll never go the humira or remicade route but I defiantly wanted to try LDN first. It took a good 6 months before her blood work started showing improvement. I hope your son feels better soon.
I feel exactly like you. My daughter is 16 and has been on LDN for over a year. She was dx when she was 14, every doctor pushed for apriso, imuran, humira and remicade, not to mention the months of prednisone. i haven't ran into a GI yet that knows about LDN. After studying LDN for months i found a medical doctor that prescribed it for her. She's still has a few bumps here and there but she's so much better today thanks to LDN. LDN was the only way she finally got of the steroids. I'm not saying we'll never go the humira or remicade route but I defiantly wanted to try LDN first. It took a good 6 months before her blood work started showing improvement. I hope your son feels better soon.
- Location
- australia
hi snoopy...your son is lucky to have a mum like you who is prepared to go the distance with alternative diets. I have tried most of them and still do. I take remicade now. What about the fecal transplants? that is new, it is healthy....there is loads of research saying that a crohns gut is lacking in the right probiotics, 'good' basteria, parasites, etc....so they are taking healthy poo from people and infusing it into people with crohns and other life threatening gut issues. they are having terrific results with it! Amazing to think. good luck.
im 17 and went on remicade as a last resort and was given 3 high doses in a relatively short amount of time. Remicade only works for 70% of people and unfortunately it didnt work for me. I ended up needing my colon removed and having jpouch surgery which i am having part 2 of 3 next week. You should definetly try it but its suppose to work in the first few times you get an infusion, so if it doesnt work i would recomend stopping it, because it does have bad side effects. It made me very tired, but it has worked wonders on some people. Hope it works on him and he's luckier than me. My mom was also very concerned about it.