My son 15 yrs old, diagnosed with Crohn's in Feb 2020. He just finished his 10-week Prednisone course which has shown remission of his symptoms. GI specialist has suggested to put him on Humira. I am just concerned about his immune system is supressed when on Humira and in the present COVID-19 situation it is a big concern. Did any of the patients were given any other medicine before recommending Humira or any other biologics? Was that drug effective? I am a little confused. Any suggestions or recommendations?
Recently diagnosed with Crohn's
- Thread starter Rak
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Tagging so parents group
@crohnsinct
@Tesscorm
Group here
https://crohnsforum.com/forums/Parents-of-Kids-with-IBD/
Crohns is autoimmune meaning your child immune system is on hyper alert - inflammation throughout his system -mainly the gut but crohns patients get extra intestinal manifestations as well which may be the skin , joints , vascular System , heart , lungs etc...
Ds was dx at age 7
He is now 16
He started biologics at age 8 after trying Pentasa (5asa ) 6-mp (no longer recommenced causes lymphoma at higher rates ) and methotrexate
All of these suppress the immune system
They are immunosuppressants
Biologics also suppress the immune system
that said that is different than immunocompromised
Immunocompromised is folks who have had organ transplants -they may take meds but at a very very High level
We were told for ds that it is far better to have inflammation under control in his body if he were to get covid then to be severely inflamed from uncontrolled crohns/arthritis.
they know covid is bad when it creates systemic inflammation.
biologics such as humira do not make you more likely to get sick - when the kiddo gets any infection the biologics or immunosuppressants is stopped until the infection is cleared
Ds was on remicade at age 8. Humira from 9-14 and now Stelara from age 14-16.
No extra infections he is actually my healthy kiddo
Blood work such as wbc etc is monitored closely
His is right in the middle of normal
He is also on immunosuppressants-methotrexate and has been for years
covid is scary for anyone right now
Kids fair better
Ds specialists are more concerned over his asthma than being on biologics since that to them is a greater risk .
It’s hard
Steroids like pred are much higher risk than biolgics during covid which is why they want the inflammation down under control so extra doses of steroids are not needed
Hugs
@crohnsinct
@Tesscorm
Group here
https://crohnsforum.com/forums/Parents-of-Kids-with-IBD/
Crohns is autoimmune meaning your child immune system is on hyper alert - inflammation throughout his system -mainly the gut but crohns patients get extra intestinal manifestations as well which may be the skin , joints , vascular System , heart , lungs etc...
Ds was dx at age 7
He is now 16
He started biologics at age 8 after trying Pentasa (5asa ) 6-mp (no longer recommenced causes lymphoma at higher rates ) and methotrexate
All of these suppress the immune system
They are immunosuppressants
Biologics also suppress the immune system
that said that is different than immunocompromised
Immunocompromised is folks who have had organ transplants -they may take meds but at a very very High level
We were told for ds that it is far better to have inflammation under control in his body if he were to get covid then to be severely inflamed from uncontrolled crohns/arthritis.
they know covid is bad when it creates systemic inflammation.
biologics such as humira do not make you more likely to get sick - when the kiddo gets any infection the biologics or immunosuppressants is stopped until the infection is cleared
Ds was on remicade at age 8. Humira from 9-14 and now Stelara from age 14-16.
No extra infections he is actually my healthy kiddo
Blood work such as wbc etc is monitored closely
His is right in the middle of normal
He is also on immunosuppressants-methotrexate and has been for years
covid is scary for anyone right now
Kids fair better
Ds specialists are more concerned over his asthma than being on biologics since that to them is a greater risk .
It’s hard
Steroids like pred are much higher risk than biolgics during covid which is why they want the inflammation down under control so extra doses of steroids are not needed
Hugs
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- Apr 15, 2012
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Sorry I wasn’t clear
There are two plans
Step up theory which starts at the least effective meds by class
5-asa (Pentasa asacol etc)-bottom least effective lowest risk -not recommended as monotherapy for crohns since it treats only the top layer of the intestine and crohns goes through all of the layers
Immunosuppressants (6-mp,imuran ,methotrexate)
More effective than 5-asa but more risk
They no longer recommend 6-mp or imuran
Can cause sterility in males /increases risk of lymphoma significantly
Most Gi only use methotrexate now
Methotrexate causes side effects for most when you take it -flu like symptoms for a day or two
It’s given by injection when used as monotherapy
And as pills or injection when used as add on
Biologics Are remicade humira cimiza entyvio and stelara most effective but risks are there
Forms a pyramid
The other method is step down hit with most effective drug first biologics (reduces risk if surgery within 5 years to 30-40% -bottom up method has a 75% risk of surgery within 5 years of dx for kids )
as far as Ds
He took Pentasa 30 days - he was dx with mild crohns
It did nothing -he got worse
He took 6-mp for 8 months - liver enzymes went through the roof during those 8 months . We lowered the drug -added allopurinol but never got to a decent level that didn’t affect his liver or stop the vomiting
He did een (formula only in the beginning as well as multiple rounds of steroids each time he switched )
He then tried methotrexate for 4 months each time we lowered steroid bridge he developed vasculitis
The whole 1st year we thought our child had to LIVE with being sick since he had crohns
Finally he started remicade and the voimiting stopped
I got my kid back
After 8 months allergic reaction to remicade abd he was placed on humira for over 5 years
My point when we started the journey I wanted my kiddo on no drugs was determine to stick with nothing but een
Even Pentasa scared me
Seeing my kiddo thrive on biologics is nothing short of amazing
scary in the beginning but now amazing
the drugs you start at depend on the level of damage /inflammation your Gi found for your child
The docs past experience and how agreed I’ve they feel his disease will be
Damage typically can’t be fixed abd must be cut out if inflammation is left out of control
you can live without a large intestine
But not a small intestine so they try to preserve as much as possible
There are two plans
Step up theory which starts at the least effective meds by class
5-asa (Pentasa asacol etc)-bottom least effective lowest risk -not recommended as monotherapy for crohns since it treats only the top layer of the intestine and crohns goes through all of the layers
Immunosuppressants (6-mp,imuran ,methotrexate)
More effective than 5-asa but more risk
They no longer recommend 6-mp or imuran
Can cause sterility in males /increases risk of lymphoma significantly
Most Gi only use methotrexate now
Methotrexate causes side effects for most when you take it -flu like symptoms for a day or two
It’s given by injection when used as monotherapy
And as pills or injection when used as add on
Biologics Are remicade humira cimiza entyvio and stelara most effective but risks are there
Forms a pyramid
The other method is step down hit with most effective drug first biologics (reduces risk if surgery within 5 years to 30-40% -bottom up method has a 75% risk of surgery within 5 years of dx for kids )
as far as Ds
He took Pentasa 30 days - he was dx with mild crohns
It did nothing -he got worse
He took 6-mp for 8 months - liver enzymes went through the roof during those 8 months . We lowered the drug -added allopurinol but never got to a decent level that didn’t affect his liver or stop the vomiting
He did een (formula only in the beginning as well as multiple rounds of steroids each time he switched )
He then tried methotrexate for 4 months each time we lowered steroid bridge he developed vasculitis
The whole 1st year we thought our child had to LIVE with being sick since he had crohns
Finally he started remicade and the voimiting stopped
I got my kid back
After 8 months allergic reaction to remicade abd he was placed on humira for over 5 years
My point when we started the journey I wanted my kiddo on no drugs was determine to stick with nothing but een
Even Pentasa scared me
Seeing my kiddo thrive on biologics is nothing short of amazing
scary in the beginning but now amazing
the drugs you start at depend on the level of damage /inflammation your Gi found for your child
The docs past experience and how agreed I’ve they feel his disease will be
Damage typically can’t be fixed abd must be cut out if inflammation is left out of control
you can live without a large intestine
But not a small intestine so they try to preserve as much as possible
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My son was diagnosed just before turning 17 years old. His initial treatment was six weeks of EEN (exclusive enteral nutrition) and a week of IV flagyl. Following the six weeks of EEN, he was kept on supplemental EN - a regular diet (with a few restrictions like seeds, nuts, etc.) and half of the EEN amount he'd been taking during the exclusive period. (Exclusive period he was ingesting 3000 cal/night (he used NG tube overnight), during supplemental phase, he ingested 1500 cal/night, 5 nights/week).
For the next 1.5 years, this was his only treatment (also nexium on nights he used NG tube because NG tube caused him heartburn).
EEN took him into remission, supplemental EN kept him in "clinical" remission. This means he had no outward signs of crohns. He felt good, looked good, gained tons of weight back, etc. However, MRIs continued to show simmering inflammation.
Upon transfer to an adult GI, the new GI was not comfortable with the simmering inflammation and believed it was only a matter of time until there was a problem and he put my son on remicade.
I hated the thought and I'd loved that his only treatment thus far had no side effects! But, my son was leaving to go away to university and was 18 at that time. On top of his GIs advice, I gave my son all my pro and con reasons for remicade and let him make the decision. He did not want to risk surgery or a flare that would interfere with his school and chose to add remicade.
It's now been over 7(??) years and he's doing great. I have found that he regularly (once or twice a year) gets random, often unexplained infections - skin rashes, eye infections, etc. So far, these have all just cleared up... usually without any treatment. While away at school, he did develop lots of respiratory infections... probably a combination of living with so many other students, not as healthy a diet, etc. (this has not been a problem since he finished school and moved back home). I'm sure remicade played a part but as it hasn't happened since he's moved back, I think the environment was more an issue with the respiratory infections.
I can understand your concerns re Covid-19. It is a worrisome time. I know it's difficult with teens but try to stress the importance of him doing all he can to help himself (mask, gloves, social distancing, etc.).. I know all this isn't much of a reassurance but it's a bit of a help.
For the next 1.5 years, this was his only treatment (also nexium on nights he used NG tube because NG tube caused him heartburn).
EEN took him into remission, supplemental EN kept him in "clinical" remission. This means he had no outward signs of crohns. He felt good, looked good, gained tons of weight back, etc. However, MRIs continued to show simmering inflammation.
Upon transfer to an adult GI, the new GI was not comfortable with the simmering inflammation and believed it was only a matter of time until there was a problem and he put my son on remicade.
I hated the thought and I'd loved that his only treatment thus far had no side effects! But, my son was leaving to go away to university and was 18 at that time. On top of his GIs advice, I gave my son all my pro and con reasons for remicade and let him make the decision. He did not want to risk surgery or a flare that would interfere with his school and chose to add remicade.
It's now been over 7(??) years and he's doing great. I have found that he regularly (once or twice a year) gets random, often unexplained infections - skin rashes, eye infections, etc. So far, these have all just cleared up... usually without any treatment. While away at school, he did develop lots of respiratory infections... probably a combination of living with so many other students, not as healthy a diet, etc. (this has not been a problem since he finished school and moved back home). I'm sure remicade played a part but as it hasn't happened since he's moved back, I think the environment was more an issue with the respiratory infections.
I can understand your concerns re Covid-19. It is a worrisome time. I know it's difficult with teens but try to stress the importance of him doing all he can to help himself (mask, gloves, social distancing, etc.).. I know all this isn't much of a reassurance but it's a bit of a help.
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Hi
I’m sorry your son is so young! Well first up I also have crohns/colitis since my 20s. I’m 43 now so I have been dealing with it for a long time. I have not ever been put on Humira and also think it’s not the best...years of prednisone, asacol, Lialda, animas, but not anymore. So here are my changes I made:
I eat clean- lots of green leaved veggies, ginger turmeric which I blend up and drink everyday.
im also not eating any kind of meats anymore, fish yes only pan seared or baked. Next thing which is the most important I take a multivitamin and probiotics. Those I get from an online wellness store.
since over 1 year I had not had one flare up, and counting! I’m not saying I’m healed but my intestine is in good health. It took me years to figure and try things but I finally found it. These vitamins are plant based, no chemicals! The probiotics are acid resistant and actually get to the intestines. They provide the balance for the gut!
One important thing is also the state of mind. So crohns is also caused by stress and worry and it’s important that you as his parents try to support him anyway you can! I have pets in the house, a cat and dogs, they provide for happiness too! Calm you, love you and make you feel really good.
i was blessed to also have a great husband who I could talk about the disease. He is loving caring and that’s important! Love and care provide happiness as well. Crohns is forever but you can be in remission for a very long period of time, so I highly recommend to get him on multivitamin and probiotics and a clean diet. And I’m not saying don’t be on meds or doctors care, of corse do that if it’s necessary.
blessings! Seli.
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I have crohns colitis since 20 years. Since one year when I started to take a very high quality multivitamin and mineral and probiotics combination and changed my diet- no meat only green leaved veggies and root vegetables and fish (baked) plant based diet, I have been in remission without any meds whatsoever! I can eat sweets, nuts and fruits berries etc- does not give me any issues! The quality of the probiotics and vitamins is superb! Not expensive though, I order them at an online wellness store. Not saying one with crohns shouldn’t be on meds but I’m saying I did a change in my diet and vitamins and I am off any chemical meds. Vitamins are good for your immune system as well, to fight infection by the way.
Good luck to you and your son!
Thank you for sharing your experience. I would appreciate it if you can share the vitamin store name and the vitamins itself. We are leaning towards Humira for him as he is very young and the disease is at the initial stage, to use more aggressive treatment should keep him in remission, especially in his growing years. I hope this works for him.
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Yes I want to say that have him get the humira treatment, Hopefully he can get in remission and in addition I’m happy to share the vitamins. Would you mind sharing an email address where I could communicate further about the vitamins? They are plant and herb based, safe and of corse I encourage you to share the ingredients with his doctor, so he can also approve.just because if he is on humira some ingredients might interfere, so definitely check with the doc. But generally they are harmless, I give for example my 13 year old a combination of probiotics, omegas and Vitamin C. The same I also take (Especially now with the pandemic) I’ll attach an example of the probiotics in addition to the other supplements I take, below. Details of the other supplements I will gladly send you in an email where I can include the ingredients.
Attachments
Please send details to [email protected]
