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Recently diagnosed with Crohn's

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?
I am also trying to learn is going on biologics more aggressive approach? Should other medication be tried first, if not working, then go on bio.? Waiting for his FC results. Recent blood report shows improvement, is WCB is 15 compared 43 in January. Even when on Prednisone, he consumed 3-4 bottles of Ensure which I think have helped him a lot.
 
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crohnsinct

Well-known member
Hi there and welcome. Sorry to hear of your son's diagnosis but you have come to the right place for parental support and advice.

Historically, the way the ladder went with Crohn's treatments was 5 ASA's, then immunomodulators and then biologics. Biologics are the most expensive drug so insurance traditionally made patients try the 5 ASA's first and wait to fail before moving up the ladder. 5 ASA's are basically useless when it comes to Crohn's. There are some patients with very mild disease confined to the colon who do well with them but by virtue of the fact that your son got the disease young and has already needed a ten week course of steroids to get the disease under control, he would not be in the mild category.

Immunomodulators would be the next level. These are azathioprine and methotrexate. Most pediatric IBD docs will not use azathioprine for a teenage boy because of the risk of a rare but very serious form of cancer. So if you are going to try to work your way up methotrexate would be the next choice but honestly the immunomodulators are A) not as effective and B) have a worse risk and side effect profile than the biologics.

The most important thing is to get the disease under control quickly before it could do more damage. Research studies show that the sooner you could control disease the better shot you have at changing the disease course. Humira and Remicade have the best success rate. I have two daughters who have been on biologics for a combined total of 13 years and they have never had a problem with them. They have shared a bed with a cousin who came down with the flu, gone on mission trips where half the youth group came down with mono, have been exposed to strep and a multitude of other kiddie viruses and illnesses and they are the healthiest of all of their friends. One of my daughters had mild disease and did try methotrexate for a year and it didn't work so she moved on to Remicade and it works very well for her.

As far as Covid goes, there is a thread here that gives you all of the information for IBD patients. They are saying that the biologics do not increase your risk of getting Covid and there is some research going on that is finding that it actually may have some protective value should you contract the disease. The biggest risk factor for an IBD patient is actually prednisone so the GI's are suggesting that patients stay on their meds and not risk a flare that might have to be treated with prednisone and leave them more at risk. Also, the healthier you are overall the better able you will be to fight any illness that comes your way. Ironically, he was already on the riskiest IBD drug and at the most active Covid time.

I hope this answered your questions. If not, feel free to ask away.
 
As a mom that had time wasted on going up the ladder of medication and of course hindsight is always 20/20. My son stopped growing and developing for 4 years while we tried other medication. He has been on Remicade for 6 1/2 years now and has been in remission the entire time. He went through 3 years of high school and just finished his junior year at college. In that time he has had only very minor blips in Crohn's activity and I'm convinced it was just major stress that had a few break through symptoms. He wasn't happy with his major, was working, going to school full time and playing baseball which involved travel Friday-Monday every weekend leaving little time to study in classes he wasn't thrilled with anyway. Needless to say he changed his major, decided his baseball career was over and voila just like that the symptoms went away.
As far as Covid, he takes precautions and wears a mask if he has to go out but is being good about social isolation. He does go to work but is only cooking pizza and not dealing with the public.
 
Hi there and welcome. Sorry to hear of your son's diagnosis but you have come to the right place for parental support and advice.

Historically, the way the ladder went with Crohn's treatments was 5 ASA's, then immunomodulators and then biologics. Biologics are the most expensive drug so insurance traditionally made patients try the 5 ASA's first and wait to fail before moving up the ladder. 5 ASA's are basically useless when it comes to Crohn's. There are some patients with very mild disease confined to the colon who do well with them but by virtue of the fact that your son got the disease young and has already needed a ten week course of steroids to get the disease under control, he would not be in the mild category.

Immunomodulators would be the next level. These are azathioprine and methotrexate. Most pediatric IBD docs will not use azathioprine for a teenage boy because of the risk of a rare but very serious form of cancer. So if you are going to try to work your way up methotrexate would be the next choice but honestly the immunomodulators are A) not as effective and B) have a worse risk and side effect profile than the biologics.

The most important thing is to get the disease under control quickly before it could do more damage. Research studies show that the sooner you could control disease the better shot you have at changing the disease course. Humira and Remicade have the best success rate. I have two daughters who have been on biologics for a combined total of 13 years and they have never had a problem with them. They have shared a bed with a cousin who came down with the flu, gone on mission trips where half the youth group came down with mono, have been exposed to strep and a multitude of other kiddie viruses and illnesses and they are the healthiest of all of their friends. One of my daughters had mild disease and did try methotrexate for a year and it didn't work so she moved on to Remicade and it works very well for her.

As far as Covid goes, there is a thread here that gives you all of the information for IBD patients. They are saying that the biologics do not increase your risk of getting Covid and there is some research going on that is finding that it actually may have some protective value should you contract the disease. The biggest risk factor for an IBD patient is actually prednisone so the GI's are suggesting that patients stay on their meds and not risk a flare that might have to be treated with prednisone and leave them more at risk. Also, the healthier you are overall the better able you will be to fight any illness that comes your way. Ironically, he was already on the riskiest IBD drug and at the most active Covid time.

I hope this answered your questions. If not, feel free to ask away.
Thank you so much for sharing your experience and providing the details. It is beneficial to learn from a parent who has first-hand experience with Humira. Does any of your kids have any side effects from Humira? Are they still on it or taking some other medication?
 
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As a mom that had time wasted on going up the ladder of medication and of course hindsight is always 20/20. My son stopped growing and developing for 4 years while we tried other medication. He has been on Remicade for 6 1/2 years now and has been in remission the entire time. He went through 3 years of high school and just finished his junior year at college. In that time he has had only very minor blips in Crohn's activity and I'm convinced it was just major stress that had a few break through symptoms. He wasn't happy with his major, was working, going to school full time and playing baseball which involved travel Friday-Monday every weekend leaving little time to study in classes he wasn't thrilled with anyway. Needless to say he changed his major, decided his baseball career was over and voila just like that the symptoms went away.
As far as Covid, he takes precautions and wears a mask if he has to go out but is being good about social isolation. He does go to work but is only cooking pizza and not dealing with the public.
Thank you for sharing your experience and glad to learn that your son has recovered. Kids don't even realized that they are stressing out and this disease creeps in. I am in kind of double mind should I start Humira or try other medicine. Seems Humira has worked wonderfully for most of the teenagers. Did your son develop any kind of side effects while on Ramicade? Is he still on any kind of medication?
 
@Rak, my son too is on Remicade and it has helped immensely. He is 21 and although he probablly had crohn's since his early to mid teens, he was diagnosed a couple years ago with both crohn's and AS (arthritis of the spine/hips). He reached a point where he had trouble walking, crouching - he was down to 110 lbs, and basically he wasn't living the life of a young adult. Remicade has changed things. It took a while to get the right dose but he has gained 40 lbs and his mobility is great. He has had no side effects from this medication. It has been a life changer for him. Good luck.
 

crohnsinct

Well-known member
No side effects from Remicade for either of my girls and so far after two loading doses of Humira no side effects for my older daughter. They did both get psoriasis that the GI is claiming was Remicade induced but the dermatologist isn’t convinced that Remicade caused it for either of them. My older daughter had a patch before she was put on Remicade but it seriously exploded after she started Remicade. My younger daughter didn’t get her bad psoriasis until after a year on Remicade. Most people who get biologic induced psoriasis do very well with topical creams or adding methotrexate or even switching meds.
 
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my little penguin

Moderator
Staff member
Ds was on remicade first -worked well for 8 months had an allergic reaction
Switched to humira which worked great for over 5 years (he had to stop due to non ibd surgery and it didn’t work when restarted )
He is currently on Stelara and doing well
 
No side effects, he is still on Remicade. I get wanting to try other lesser meds as those that have been around can attest to I was terrified of him going on Remicade or one of the other "big" drugs. I and his GI to some extent didn't think he was "bad enough" His biggest symptom was lack of growth and development we even did a bunch of testing with an endocrinologist thinking that maybe his failure to thrive was due to something other than his Crohn's. Couldn't find any other things and the endocrinologist said to him many people are tiny it's probably just the way you are. His labs were always in normal range and over time we've figured out that we could not count on those. After Endocrinologist not finding anything his GI decided to do an MRE and we found massive inflammation in the small intestine despite his normal labs and he was started on Remicade and has not looked back. The endocrinologist was wrong by the way unless you consider 6'2" to be tiny. Last MRE showed no inflammation.
 
Thanks CIC! I wish for remission and success for all our kiddos
Were you following any particular diet? My sone is avoiding milk, it just makes him gasy. He is consuming Ensure and his regular food. I am leaning more towards Humira after coming to this forum but still have my parental concerns about how he is going to respond to the drug.
 
We tried the SCD diet at one point, no gluten at another. He was such a picky eater that we just couldn't get enough calories to even see if it helped or not. He has done EEN as a treatment in place of prednisone and it worked well, he has also done supplemental nutrition with pediasure peptide since it's further broken down than Ensure and more easily absorbed. The only time he does supplemental now is when he is playing sports, he was a pitcher for the baseball team at college and they were required to work out a ton and he's already really thin so needed the extra calories and he does Orgain for that. He pretty much eats whatever he wants at this point except popcorn, seeds and things like that.
He luckily enough has never had to avoid milk which is a surprise since I'm lactose intolerant as is his younger brother.
Trust me I know exactly how you are feeling in regards to the Humira, I've been there just one thing to think about the longer the inflammation goes on the greater the chance of damage and scar tissue building up which generally means surgery.
I wasn't new to Crohn's when he was diagnosed as his father also has Crohn's diagnosed in 1993 and the meds were not as good back then and he had 3 surgeries before finally getting on something that worked for him. Azathioprine which unfortunately he had to quit about 3-4 years ago due to some liver damage.
All the meds have some risk to them for example methotrexate a lot of people tolerate well and is considered one of the "minor" meds for Crohn's but it caused lung scarring in Jack after a short amount of time. For us the benefits vs risks of Remicade ended up being the best course of action.
 

crohnsinct

Well-known member
JM - you bring up a good point. It has beans long for us that I sometimes forget to point out the dangers of untreated or under treated Crohn's. O was 12 when dx'd and unlike others who have a long road to dx, O's was swift and dramatic. We really had no clue she had IBD. Sure she wasn't growing very much, was very slowly losing weight (just a little at a time that you didn't notice until the yearly check up), feet never grew, slower swim times...that sort of thing. One day she went out with friends and ate Chinese food from a mall food court. From that night on she had severe diarrhea. We thought food poisoning. Lasted about two weeks and we brought her to the pediatrician. They finger pricked her and her HGB was 8! They sent us immediately to hospital. GI said he would scope her a few days later and the next day she was in ICU, septic and fighting for her life. All because we didn't know she had the disease and weren't treating it all along. Fast forward to last year and her GI kept saying her symptoms were due to IBS. He finally scoped her and found severe disease and we ended up chasing the run away flare and she went septic again. Risk of un or under treated disease is very real and a much sure thing then any of the possible rare risks with the meds.

I have posted a useful site here for helping understand meds and go through what you are and are not willing to accept. Let me see if I can find it and post it here
 
Does any of your kids have chills/shivers while having cramps? My son's body shivers a lot when he is having cramps and sometimes the cramps are absent but he had shivers. When that is happening he feels very cold and we have to increase the blanket layers. I am not sure if these shivers are related to his Crohn's or something else. Please share the information, if anybody had one.
 

my little penguin

Moderator
Staff member
Did you take his temp ?
Mine gets the “chills” from an auto inflammatory condition that causes inflammation-sometimes fever
What number is he rating his abdominal cramps 1-10?

I would definitely let his Gi know All of the above and below
Does it get worse after a bm ?
Prior ?
Eating ?
Only pain in one spot ?
 
Did you take his temp ?
Mine gets the “chills” from an auto inflammatory condition that causes inflammation-sometimes fever
What number is he rating his abdominal cramps 1-10?

I would definitely let his Gi know All of the above and below
Does it get worse after a bm ?
Prior ?
Eating ?
Only pain in one spot ?
Temp was 97.4°F. Abdominal cramp on scale 0f 1-0 was 3.
So far he has mostly experienced this during the night times and today for the first had it in the morning &7 AM).
Pain is normal around the navel area.
I did inform his GI.
What you were doing when your kid was having shivers?
Not sure if this is related to stress?
 

my little penguin

Moderator
Staff member
Night sweats - where the kiddo breaks out in sweats at night /sometimes no sweating but gets the chills or shivers afterwards - typically for my kiddo when inflammation is present during a flare
Either his crohns /arthritis or auto inflammatory stuff
Very common for him in the middle of the night and early am
That is when cortisol drops

when inflammation is under control the night sweats /chills /shivers go away
 

crohnsinct

Well-known member
Night sweats and fevers are hallmark IBD flare symptoms. If he is having fever during the day it very well could be an IBD flare. Who my daughter is flaring and has fevers she most definitely gets those chills and shivering. She actually gets that before the fever kicks in.

Has your son started any maintenance meds?

I am glad you told the GI. They need to know. Might do some lab work to see how his inflammatory markers are. Might pull a Cover test as well because gastro symptoms are common at the beginning of Covid as are the fevers.

We bundle O up in blankets same as you and treat fevers with Tylenol.

Good Luck. Keep us posted.
 
Night sweats and fevers are hallmark IBD flare symptoms. If he is having fever during the day it very well could be an IBD flare. Who my daughter is flaring and has fevers she most definitely gets those chills and shivering. She actually gets that before the fever kicks in.

Has your son started any maintenance meds?

I am glad you told the GI. They need to know. Might do some lab work to see how his inflammatory markers are. Might pull a Cover test as well because gastro symptoms are common at the beginning of Covid as are the fevers.

We bundle O up in blankets same as you and treat fevers with Tylenol.

Good Luck. Keep us posted.
He just started Humira last week. No other medication.
No fever when he is having shivers and back to normal after two bad hours. No cramps and bm is normal, no diarrhea. I am hopeful all this disappears once Humira start showing the improvement signs.
Are you trying any other alternate medicine?
 

crohnsinct

Well-known member
Oh good. Hopefully the Humira will kick in soon. It can take a while. It is so much harder to monitor improvement when they don't usually show signs. I have one daughter who is pretty mild and one who is very dramatic and the dramatic one while hard to control disease is much more easy to judge how she is doing.

I wouldn't necessarily judge things by O (the one on Humira) because she has very severe and refractory disease but yes, we are doing other things. First and very basic, she supplements with vitamin D which has been been shown to be crucial to controlling Crohn's disease. Second, she is on the SCD. Very strict. Third, she is also on Entyvio at double dose and every 4 weeks which is a pretty aggressive treatment plan. And Lastly, she is on 9 mg of Entocort daily. Entocort is technically a steroid and not meant for long tern use so we are hoping to get rid of that soon but every time we taper that symptoms come back so I am not really sure where we stand with that right now.

Glad to hear his cramps have lessened and there is no diarrhea. Hopefully the shivering will stop soon.

Good luck and please keep us posted!
 
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