My daughter has been on Humira for about 14 weeks now. At 11 weeks she went to weekly doses. She is just the same, hasn't improved. She lost some weight, we got it back on her, the Dr suggested adding methotrexate injections. We were leaving on vacation and only got the pill form because we had no time to get to the Dr office for instruction on the injections. From what I have read, the pills do little aside from their side effects. My daughter, 12 told me yesterday that she would rather live in Heaven sometimes where she could play abd be happy w/o pain. This is a very lonely disease. We don't have dont have insurance, so remicade infusions are an option if we can get the meds free, but the cost for the infusions may break us. Any one find success in reaching remission on the combo of Humira and methotrexate?
Humira and methotrexate
- Thread starter ElleT
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Apr 15, 2012
- Messages
- 14,789
As far as insurance
Most states have a version of insurance for kids with critical illness which covers the child care regardless of income
The social worker through the Gi office
Please look there and on your states Medicaid website it’s typically hidden there
oral methotrexate
My kiddo was on oral methotrexate plus humira for years
He currently takes Stelara plus methotrexate orally
He just had to hold his methotrexate due to Covid vaccine booster (required to be held up to two weeks after the shot )
The methotrexate makes a huge difference for him
He is counting the days till he can take it again despite the nausea he gets with it .
I believe it took my kiddo 5-6 months before humira started to work
But Gi tried him on the kiddie dose first (20 mg syringe) even though Ds was at the max weight for the kiddie dose
Once he was put on an adult dose at 40 mg we saw an improvement
as far as feeling bad
Most gi offices have medical coping psychologist who can help her learn to deal with this disease and the issues with it
once you find the right med combo
Your kiddo will no be in pain
Will be able to play and enjoy things
Finding that combo is the problem
But you will get there
Is she on formula only ??
That can help achieve remission faster and let her feel better faster since it acts like steriods abd reduces inflammation so less inflammation using up the humira
it takes a bit
Ds was dx at age 7
Now 18
Crohns really isn’t on his kid much at all these days
he sees his Gi 2-3 times a year with bloodwork every 3 months
That’s it
His juvenile arthritis is another story but crohns
Just sits in the background
hugs
Most states have a version of insurance for kids with critical illness which covers the child care regardless of income
The social worker through the Gi office
Please look there and on your states Medicaid website it’s typically hidden there
oral methotrexate
My kiddo was on oral methotrexate plus humira for years
He currently takes Stelara plus methotrexate orally
He just had to hold his methotrexate due to Covid vaccine booster (required to be held up to two weeks after the shot )
The methotrexate makes a huge difference for him
He is counting the days till he can take it again despite the nausea he gets with it .
I believe it took my kiddo 5-6 months before humira started to work
But Gi tried him on the kiddie dose first (20 mg syringe) even though Ds was at the max weight for the kiddie dose
Once he was put on an adult dose at 40 mg we saw an improvement
as far as feeling bad
Most gi offices have medical coping psychologist who can help her learn to deal with this disease and the issues with it
once you find the right med combo
Your kiddo will no be in pain
Will be able to play and enjoy things
Finding that combo is the problem
But you will get there
Is she on formula only ??
That can help achieve remission faster and let her feel better faster since it acts like steriods abd reduces inflammation so less inflammation using up the humira
it takes a bit
Ds was dx at age 7
Now 18
Crohns really isn’t on his kid much at all these days
he sees his Gi 2-3 times a year with bloodwork every 3 months
That’s it
His juvenile arthritis is another story but crohns
Just sits in the background
hugs
My husband is very much against throwing meds at her fragile system, the concern is that the meds will create more issues than they solve. She is eating food, crushing calories at 2000/day. When she is short she has the kate farms shakes. We are very focused on good food, quality anti inflammatory nutrition. We did a few months with homeopathic treatment which eleminated her pain but the inflammation was still high so we started the Humira. This disease is hard to manage because our Dr (actively searching for a new one) is all about pills injections and procedures and gives no consideration to sun light, exercise and a high callorie healthy fat diet. We DO NOT see eye to eye.As far as insurance
Most states have a version of insurance for kids with critical illness which covers the child care regardless of income
The social worker through the Gi office
Please look there and on your states Medicaid website it’s typically hidden there
oral methotrexate
My kiddo was on oral methotrexate plus humira for years
He currently takes Stelara plus methotrexate orally
He just had to hold his methotrexate due to Covid vaccine booster (required to be held up to two weeks after the shot )
The methotrexate makes a huge difference for him
He is counting the days till he can take it again despite the nausea he gets with it .
I believe it took my kiddo 5-6 months before humira started to work
But Gi tried him on the kiddie dose first (20 mg syringe) even though Ds was at the max weight for the kiddie dose
Once he was put on an adult dose at 40 mg we saw an improvement
as far as feeling bad
Most gi offices have medical coping psychologist who can help her learn to deal with this disease and the issues with it
once you find the right med combo
Your kiddo will no be in pain
Will be able to play and enjoy things
Finding that combo is the problem
But you will get there
Is she on formula only ??
That can help achieve remission faster and let her feel better faster since it acts like steriods abd reduces inflammation so less inflammation using up the humira
it takes a bit
Ds was dx at age 7
Now 18
Crohns really isn’t on his kid much at all these days
he sees his Gi 2-3 times a year with bloodwork every 3 months
That’s it
His juvenile arthritis is another story but crohns
Just sits in the background
hugs
- Joined
- Apr 15, 2012
- Messages
- 14,789
Your missing the point of formula only
When you don’t eat solid foods
And you just drink formula (Kate farms is organic )
It heals the gut
But when you eat solids the healing stops in crohns unless your maintenance med can handle the residual inflammation left.
Natural healing does not fix crohns
I have been here for 11 years
Just doesn’t work
No parent wants there child to under Gi procedures or take pills /infusions or injections
It’s not a matter of making healthier life choices
You are trying to save your child’s intestine from damage which can result in short gut ,ostomy , sepsis ,cancer or death .
It’s that simple
healthy life choices do help but can’t fix it alone
The system isn’t fragile
It’s over active -attacking itself
With the right meds that stops
My kiddo hasn’t been any sicker than his sibling who doesn’t take any ibd meds
In fact my ibd kiddo is healthier - because his immune system is on overdrive
my kiddo is healthy 5’11” with normal life and friends and nice health pink intestines-fecal cal below 15
So it’s very possible
When you don’t eat solid foods
And you just drink formula (Kate farms is organic )
It heals the gut
But when you eat solids the healing stops in crohns unless your maintenance med can handle the residual inflammation left.
Natural healing does not fix crohns
I have been here for 11 years
Just doesn’t work
No parent wants there child to under Gi procedures or take pills /infusions or injections
It’s not a matter of making healthier life choices
You are trying to save your child’s intestine from damage which can result in short gut ,ostomy , sepsis ,cancer or death .
It’s that simple
healthy life choices do help but can’t fix it alone
The system isn’t fragile
It’s over active -attacking itself
With the right meds that stops
My kiddo hasn’t been any sicker than his sibling who doesn’t take any ibd meds
In fact my ibd kiddo is healthier - because his immune system is on overdrive
my kiddo is healthy 5’11” with normal life and friends and nice health pink intestines-fecal cal below 15
So it’s very possible
It's actually the other way around. Your Dr. is aggressively treating the disease with medications because it is a hard disease to manage.
One thing that Crohn's patients (and their parents if applicable) should understand is that the biggest threat to their health is not the side effects of Crohn's medications. The biggest threat to their health is uncontrolled or poorly controlled Crohn's disease.
Your Dr. knows this and that is why s/he is treating the disease aggressively. The diet, exercise, and sunlight are all great, and they will probably help to some degree. But they should used in addition to proven medication and not in place of it.
The side effects of Crohn's medications are real but very rare. The bad effects of uncontrolled Crohn's disease are real and very common.
I tried for years to get by on clean living, exercise, and minimal Crohn's medication. My Crohn's was fairly mild, and so it didn't seem like I needed strong medicine. And the strong medicine's long list of potential side effects sounded so scary. And for several years I got away with it. But my disease suddenly got aggressive, and I soon found myself on an operating table with my chest cut open and the surgeon removing the inflamed lining around my heart, because my Crohn's had suddenly escalated to a major extra-intestinal manifestation by attacking my pericardium. Today I'm happily on much stronger medicine - Stelara injections. The Stelara has worked and my disease is well-controlled with no side effects. I just wish I had started it sooner.
So now I have a big scar down the middle of my chest to constantly remind me of my folly. Don't increase your daughter's risk of a similar bad outcome by withholding the tools needed to control this serious disease.
Last edited:
- Joined
- Jun 14, 2011
- Messages
- 6,551
Just wanted to jump in and say that every parent here has agonized over these meds. I also really hated the idea of giving my son remicade. It's true that the listed side effects sound horrible and so scary. But, the support I received from the members here was a huge help with finally accepting it was necessary. What I also considered was that my son took risks every day...
- when he was 16 and learning to drive, then driving in cars with other young, teen, inexperienced drivers
- how often do you hear about drowning deaths - my son went to friends' cottages, pools, etc. I 'hoped' other parents were responsible but I wasn't always there
- my son played competitive hockey - I worried so, so much that he'd take a hit from behind, be seriously injured, etc.
- etc. etc.
Why did I allow him to do these things??? Partly because I wasn't being given a list of risks and percentages each time he left the house and mostly because all those things improved his quality of life.
The meds will improve your daughter's quality of life to allow her to do all the other crazy, fun things kids and teens do! My son is now an adult, he's been on remicade for almost 10 years. Overall, I don't think he's had any more issues than my daughter who does not have crohns nor takes any meds.
As a parent, it is hard to accept... trust your doctor. And, if you still have concerns, look into a second opinion. Can you speak to your daughter's ped? When I was deciding on remicade, I spoke with my son's pediatrician and asked what he would do if it was his son.... it might help to have their opinion too.
- when he was 16 and learning to drive, then driving in cars with other young, teen, inexperienced drivers
- how often do you hear about drowning deaths - my son went to friends' cottages, pools, etc. I 'hoped' other parents were responsible but I wasn't always there
- my son played competitive hockey - I worried so, so much that he'd take a hit from behind, be seriously injured, etc.
- etc. etc.
Why did I allow him to do these things??? Partly because I wasn't being given a list of risks and percentages each time he left the house and mostly because all those things improved his quality of life.
The meds will improve your daughter's quality of life to allow her to do all the other crazy, fun things kids and teens do! My son is now an adult, he's been on remicade for almost 10 years. Overall, I don't think he's had any more issues than my daughter who does not have crohns nor takes any meds.
As a parent, it is hard to accept... trust your doctor. And, if you still have concerns, look into a second opinion. Can you speak to your daughter's ped? When I was deciding on remicade, I spoke with my son's pediatrician and asked what he would do if it was his son.... it might help to have their opinion too.
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
I sit both sides of the fence on this debate. For one of my daughter's she has had untreated (at dx) and under treated (drugs not working) Crohn's and ended up in the ICU fighting for her life once and a second time was almost emergency transported to another center better able to handle her case. Luckily she stabilized and was able to stay where she was. She has spent an entire summer in the hospital. Part of her colon is now considered dead because of all the scarring from constant inflammation and she is facing a colectomy. Under or untreated disease can and will wreck havoc. We had to grab the drugs at dx but I have always been very interested in alternative therapies. We were lucky to have a physician willing to try them, especially when meds were not getting her to remission. Nothing we have tried has worked.
I understand your desire to avoid meds and wonder if you know of the diet therapies. If you can find a pediatric GI who is willing to try a non pharma method you will likely be looking at diet interventions such as SCD or CDED or even variations of EEN therapy (ie: EEN for 6-8 weeks to induce remission and then eat for a month do EEN for a month etc). Seattle Children's, Children's Hospital of Atlanta, Children's Hospital of Philadelphia and some docs at Boston Children's are the leaders in this field. VERY generally speaking, these methods can work for small bowel disease and maybe some colonic disease. The success rate is not very high though. They are extremely structured, the diets are very limiting and they can be hard on the kids. Especially teenagers. Getting enough calories in is hard. They have to be monitored VERY closely with lab tests and imaging. You will need to work with a registered dietician well versed in IBD and dietary therapies. If they work, usually as soon as you let up a little bit the inflammation returns. Honestly, in all my time on this particular forum, I think there has only been one kid who successively managed their disease with SCD. I am not so sure how they are doing these days. On the SCD forum I am a member of, about half are also on some sort of medicine, 25% are managing disease with diet alone and the other 25% are struggling to find what works.
I understand your desire to avoid meds and wonder if you know of the diet therapies. If you can find a pediatric GI who is willing to try a non pharma method you will likely be looking at diet interventions such as SCD or CDED or even variations of EEN therapy (ie: EEN for 6-8 weeks to induce remission and then eat for a month do EEN for a month etc). Seattle Children's, Children's Hospital of Atlanta, Children's Hospital of Philadelphia and some docs at Boston Children's are the leaders in this field. VERY generally speaking, these methods can work for small bowel disease and maybe some colonic disease. The success rate is not very high though. They are extremely structured, the diets are very limiting and they can be hard on the kids. Especially teenagers. Getting enough calories in is hard. They have to be monitored VERY closely with lab tests and imaging. You will need to work with a registered dietician well versed in IBD and dietary therapies. If they work, usually as soon as you let up a little bit the inflammation returns. Honestly, in all my time on this particular forum, I think there has only been one kid who successively managed their disease with SCD. I am not so sure how they are doing these days. On the SCD forum I am a member of, about half are also on some sort of medicine, 25% are managing disease with diet alone and the other 25% are struggling to find what works.
Similar threads
