Recently diagnosed with Crohn's

[Rak]

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.

 

[crohnsinct]

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.

 

[Jmrogers4]

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.

 

[Rak]

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?

 

[Rak]

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?

 

[Jo-mom]

@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]

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.

 

[my little penguin]

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

 

[Jmrogers4]

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.

 

[crohnsinct]

@Jmrogers4 I can listen to your success story all day! Every time you post I get a big smile on my face!

 

[Jmrogers4]

Thanks CIC! I wish for remission and success for all our kiddos

 

[Rak]

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.

 

[Jmrogers4]

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]

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

 

[crohnsinct]

BTW - both of my girls have tried diet. T tried IBD Aid and O is currently on SCD but has also tried CDED. So far no luck and she has been on SCD since late December and we are 1000% strict on it.

Found the link to that resource I was talking about! It is in the last post on this thread. https://crohnsforum.com/threads/must-read-valuable-resources-for-parents.35679/#post-995699

 

[Rak]

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]

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 ?

 

[Rak]

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]

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]

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.

 

[Rak]

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]

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!

 

[Rak]

I am back to the forum to update. Humira started in May for my son, 40 mg injection every two weeks, it is working for him. Great improvement, no more shivers and no vomiting. Only two weeks ago he noticed some blood in the stool and it stopped after 3-4 days but started again three days ago. I called the caretaking nurse, she advised to monitor it but no medicine is recommended. Just want to inquire did your kid experienced such a thing and if yes, what measures or medicine you give them? Any advice is much appreciated.

 

[Jo-mom]

That is great news. Re: blood - it's good that you are already on top of that. There is a possibility that his Humira's dose might need to be adjusted. When my son started Remicade, he was doing fine but then symptoms starting reappearing and it was because he wasn't getting enough (fast metabolizer).

 

[my little penguin]

A lot of kids have “blips”
Where for few days it’s scary ..either abdominal pain , diarrhea or blood or all of the above abd then for whatever reason ..,
It goes away
Docs want “watch and wait “ meaning you let them know but just watch it for a bit
If it’s a true flare then it will become apparent by getting worse or lasting longer ...
Ds has done this more than a few times over the years
Watching let’s you track it
And determine if there is a pattern as well
Is the bleeding stopping or starting how far from the humira shot ?
Is it repeatable ?
Any other things going on

unless it continues no med changes
If it continues then testing first before any changes
Blood tests /stool tests
Then depending on those scopes /imaging
Then steriods added if needed
Or humira frequency increased or both
But that is further down the line

after a year or two of disease you will know his pattern as will the docs
Then they may just do blood/stool tests prior to steriod /een burst

 

[Rak]

Just want to share an update with all of you. My son is on Humira since May 2020, one shot every two weeks and six months ago he was also put on Methotrexate and Folic acid. He did not complain of any cramps from last 9 months and blood report is pretty normal but the number of inflammatory markers in stool ranges 230 to 300. We are hoping to bring them down with diet and life style changes. Does anybody have any suggestions? Any idea or experience, if the growth harmone therapy helped teenager to treat the disease and help them to achieve their maximum height?

 

[my little penguin]

Did they check humira levels ?
Scopes /imaging was done over a year ago so maybe another look .
Do een (formula only ) to boost things until inflammation levels are normal .
Increase humira to every week .

Despite Ds doing very well on Stelara every 4 weeks for the past 4 years -our insurance decided that he should only need it every 8 weeks .
For 3 plus years his fecal cal has been less than 15
So very very normal
Gi switched Ds Stelara to every 6 weeks to “see” if he could handle it versus the every 8 the insurance wanted . Mini flare which took fecal cal up to 161.
So frequency of dose can be a big factor in how effective a med is .
Still fighting insurance here though

Ds did need humira more frequently when he was on that
Every 14 days for over a year or two
Then every 10 days for a year
Then every 7 days for a year
And finally every 5 days for a year. Before he switched to Stelara

 

[my little penguin]

Forgot your question about growth hormone
Growth hormone only works if there is a growth hormone deficiency
In the case of crohns kids - it’s the inflammation and /or steriods that causes a growth delay
Once in remission the growth starts again provided the growth plates haven’t closed
Endocrinologist can do a bone age study as well as determine if your child needs growth hormone
Most crohns kids (boys) grow well into there 20’s versus 17-18 due to growth delay

At dx there was a two year delay for my kiddo (but he was 7)not sure if he caught up yet at 17 bone age wise
But grew pretty close to predicted height (about 1inch shorter ) but at 5’10” already doing well
Will see if he continues to grow the next year or two

 

[Lizzyg]

Just want to share an update with all of you. My son is on Humira since May 2020, one shot every two weeks and six months ago he was also put on Methotrexate and Folic acid. He did not complain of any cramps from last 9 months and blood report is pretty normal but the number of inflammatory markers in stool ranges 230 to 300. We are hoping to bring them down with diet and life style changes. Does anybody have any suggestions? Any idea or experience, if the growth harmone therapy helped teenager to treat the disease and help them to achieve their maximum height?

My daughter age 15 is also on fortnightly humira, no other medication. She has been on humira from diagnosis. Her calprotectin has always been 30. In the three years of being in remission she has grown over 4 inches and has doubled in weight. This didn't happen over night it was quite a slow process. However her peers have now stopped growing but my daughter is continuing to grow. You may find the same will happen with your son.

 

[Rak]

We had a meeting with the Dr today and she suggested to switch him to Stelara from Humira. Calprotectin readings did not improve much with Humira over the period of almost 18 months. I am hoping Stelara will works wonders for him. Does anybody who is receiving Stelara experienced any side effects? Any feedback is much appreciated. Any additional vitamins recommended.

 

[Lizzyg]

Sorry to hear the humira didn't work for your son. What works for others may not work for some. Humira is the only treatment my daughter has been on for over 3 years and it has kept her in remission for that long. Hopefully this next treatment will be the wonder drug for your son.

Wishing him all the best.

 

[my little penguin]

My kiddo has been on Stelara since August 2017
He is almost 18 now
No side effects even with getting Stelara at 90 mg every 28 days

good luck

he does take vitamin D and vitamin C per his Gi instructions

 

[Rak]

Sorry to hear the humira didn't work for your son. What works for others may not work for some. Humira is the only treatment my daughter has been on for over 3 years and it has kept her in remission for that long. Hopefully this next treatment will be the wonder drug for your son.

Wishing him all the best.

Thank you for sharing your experience.

 

[Rak]

My kiddo has been on Stelara since August 2017
He is almost 18 now
No side effects even with getting Stelara at 90 mg every 28 days

good luck

he does take vitamin D and vitamin C per his Gi instructions

Thank you for sharing your experience. I am hoping the Stelara will do the wonders for my son too. He is also taking Vitamin D and C.

 

[Rak]

My daughter age 15 is also on fortnightly humira, no other medication. She has been on humira from diagnosis. Her calprotectin has always been 30. In the three years of being in remission she has grown over 4 inches and has doubled in weight. This didn't happen over night it was quite a slow process. However her peers have now stopped growing but my daughter is continuing to grow. You may find the same will happen with your son.

Did you give any vitamins or supplements for her height or it is just her growth spurt?

 

[cmack]

I wish you all the best. Peace and love!

 

[Lizzyg]

Did you give any vitamins or supplements for her height or it is just her growth spurt?

The consultant prescribed Vitamn D and Folic acid but that was only because her levels were low on those, she has been on and off those vitamins throughout the 3 years. Finding a treatment that works is what kicks growth back into place. Hope this next treatment will help your sons growth.

 

[Rak]

After keeping my son on HUmira for almost 20 months, Doc decided to swithc him to Stelara. Blood reports are perfectly fine, no issues but his inflamations numbers are still in the range of 300. Any suggstions based on your experience where the inflamation numbers have gone down will highly be appreciated. Has anyone heard of if wormwood herb helped in Crohn's?

 

[my little penguin]

How long has he been on Stelara?
How often does he get his shots ?
Stelara is slow acting so it takes a few months to work
Do not use any supplements without the consent of your child’s Gi

300 is too high for fecal cal
1000 is considered a flare
Over 150 is less than ideal

my kiddo has been on Stelara since 2017
It took a higher frequency 90 mg every 4 weeks to keep things under control
When he started Stelara at 90 mg every 8 weeks things were not good
So after 8 months we got insurance approval to move to every 4 weeks
Within 2-4 months he was at baseline and fecal cal below 15
Last year they tried to space them out to every 6 weeks due to insurance issues
Fecal cal went up to 160’s with just one dose at the longer frequency
He switched right back


if you want to lower inflammation quickly
Then the scientifically proven method would be exclusive enteral nutrition (een - formula only for 6-8 weeks )
This reduces inflammation and gives Stelara time to work.
Talk to your child’s Gi

 

[Rak]

How long has he been on Stelara?
How often does he get his shots ?
Stelara is slow acting so it takes a few months to work
Do not use any supplements without the consent of your child’s Gi

300 is too high for fecal cal
1000 is considered a flare
Over 150 is less than ideal

my kiddo has been on Stelara since 2017
It took a higher frequency 90 mg every 4 weeks to keep things under control
When he started Stelara at 90 mg every 8 weeks things were not good
So after 8 months we got insurance approval to move to every 4 weeks
Within 2-4 months he was at baseline and fecal cal below 15
Last year they tried to space them out to every 6 weeks due to insurance issues
Fecal cal went up to 160’s with just one dose at the longer frequency
He switched right back


if you want to lower inflammation quickly
Then the scientifically proven method would be exclusive enteral nutrition (een - formula only for 6-8 weeks )
This reduces inflammation and gives Stelara time to work.
Talk to your child’s Gi

He is on Stelara since November 2021 and is on 8 weeks schedule. Last time GI said switiching him to 4 weeks. You know the paper work takes time to things kick in. Is your child on Methatrexate too or just on Stelara?

 

[my little penguin]

He was on methotrexate plus humira originally
He has juvenile arthritis and crohns
When he switched to Stelara he continued to take methotrexate with it
This combo is to treat his arthritis which is much worse than his Crohn’s disease
Hope the every 4 weeks helps

 

[Maya142]

I'm glad his GI is increasing his Stelara to every 4 weeks. Hopefully that will work. EEN is a good option to induce remission and then Stelara would hopefully keep it in check. It's hard to do, but can be done and some doctors will allow 10-20% of calories to come from food, to make it easier. Supplemental EN can help with growth and gaining weight if you don't want do 80-100% formula.

 

[Rak]

It is almost 17 months since my son started Stelara, now every 4 weeks since almost 5 months. FCAP markers has gone down but not the numbers we want to see, He is still around 245. He experienced a flare up today after 5 months, vomitting 3-4 times and then shivering starts. Thats is th emost scary site to see your kids shivering and you can't do anything. Does any of the kids experience any shivering associated with the Crohn's symptoms? Despite having good diet, he is not gaining weight, fluctauting 51-53kg. Sharing to see if any of the other parents have success with other therapies or alternate medicines.

 

[Pangolin]

That shivering is probably due to a fever coming on, perhaps due to the Crohn's or an infection related to the Crohn's.

You're kind of already maximizing biological therapy with Stelara ever 4 weeks, but there are some other things you could add on:

EEN would make things easier on the inflamed intestines and should help things heal.

Antibiotics can help in a situation like this. Even plain old amoxicillin can be quite useful. Flagyl can help, too, but the side effects are a problem. If I were in your situation, I'd probably start a course of amoxicillin and EEN right away.

Consider getting an MRI to see how bad the the inflammation is. If there are limited very inflamed areas, it might make sense to surgically remove those areas. The biologics may work much better after surgery.

I personally would be wary of this, but sometimes doctors might add methotrexate or other immune modulators to boost the effect of Stelara.

 

[Rak]

That shivering is probably due to a fever coming on, perhaps due to the Crohn's or an infection related to the Crohn's.

You're kind of already maximizing biological therapy with Stelara ever 4 weeks, but there are some other things you could add on:

EEN would make things easier on the inflamed intestines and should help things heal.

Antibiotics can help in a situation like this. Even plain old amoxicillin can be quite useful. Flagyl can help, too, but the side effects are a problem. If I were in your situation, I'd probably start a course of amoxicillin and EEN right away.

Consider getting an MRI to see how bad the the inflammation is. If there are limited very inflamed areas, it might make sense to surgically remove those areas. The biologics may work much better after surgery.

I personally would be wary of this, but sometimes doctors might add methotrexate or other immune modulators to boost the effect of Stelara.

Thank for your suggestions. He is already taking Methotrexate with Stelara. I'll ask the Doc for the antibiotic if she can prescribe.

We did not discuss the surgery yet, but sure will discuss the optionwith Doc and we are waiting for the MRI too. LAst MRI showed part of small intestine is inflamed.

 

[asadmom]

In parallel, I would also ask the doctor for tests for infection. Hopefully that will buy you some peace of mind (well, as much as possible) and help narrow down the problem.

 

[Rak]

Has anybody tried IBD Assist?

 

[Maya142]

I think you need a better idea of what's really going on before you consider changing medications, surgery or starting a diet, so doing an MRE makes sense (or even scopes). I do highly recommend supplemental EN for weight gain, easy to absorb nutrition and to help with growth. If he's willing to do EEN that may help - it's hard for kids, but it is possible if they're on board.

Regarding shivering, did you take his temperature? My daughter often gets low grade fevers when she's flaring and she always knows because she gets cold.

 

[Rak]

Thank you for sharing your thoughts. We are waiting for our MRI turn. He do need extra warm blanket during that time and his temp remains normal during the episode. It could be his body's defense mechanism becuae when he had a bood tootheache last year, he was shivering at that time too and this is an observation by himslef.

 

[Rak]

The MRI reports shows reduction in the inflamed area. Right now he is on Stellara eveyr weeks. Stopped Methotrexate 4 motnhs ago. But i the recent past he had three episodes of flare up..same symptoms-shiveringm, cramps, bloating and vomiting. I do give him Buscapan but sometimes it is not even helpful. Today, he is going through it too. This is is the seond time it has happend after two days of Stellara injection, I am hoping the med is working for him as I observe it has helped him and he has gained some weight too. Any suggestions from the group to calm down the cramps or some other home remedies to help the kid in this situation.

 

[Cliffandmorgane]

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.

Hi, my husband was diagnosed with Crohn's more than 15 years ago and has been on 4 different medications and on rounds of steroids many times. The last medication he was on - mystelera - had such bad side effects that we had to find another solution long term. We came across the GAPS diet and researched more into medical diets and discovered a great deal of healing can happen by restoring the gut. Just wanted to share that in case that could help. There's plenty of into online, but don't hesitate to ask me any question. My husband is off the drugs and on remission now.