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The Worried Mum's/Dad's/Carer's Club!

my little penguin

Staff member
What was the dose and frequency of the AS trials with Stelara?
If it was the PsA dose of 45 mg every 12 weeks vs the Crohns dose of 90 mg every 4-8 weeks
That’s a big difference.
I haven’t seen the study recently

my little penguin

Staff member
In this prospective, open-label, single-arm, proof-of-concept clinical trial (ClinicalTrials.gov identifier NCT01330901), ustekinumab in a dose of 90 mg was administered subcutaneously at baseline, week 4 and week 16 in 20 patients with active AS. Eligible patients were required to have a diagnosis of AS according to the modified New York criteria and an active disease defined as a Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) score of ≥4 despite previous non-steroidal anti-inflammatory drug (NSAID) treatment. The primary study endpoint was the proportion of patients reached the Assessment of SpondyloArthritis International Society 40 (ASAS40) response at week 24.

RESULTS: At week 24, ASAS40 response was reached by 65% of the patients. ASAS20, ASAS5/6 and ASAS partial remission were observed in 75%, 50% and 30% of the patients, respectively. A ≥50% improvement of the BASDAI (BASDAI50) occurred in 55% of the patients. A total of 50% and 20% of the patients achieved the AS Disease Activity Score (ASDAS) clinically important improvement and major improvement, respectively. At week 24, 35% of the patients had an ASDAS inactive disease (ASDAS <1.3). Significant improvement of other patient-reported outcome parameters and active inflammation as detected by MRI as well as significant reduction of NSAIDs intake occurred during the treatment. Clinical response correlated with reduction of active inflammation on MRI and of serum C reactive protein level. Overall, ustekinumab was well tolerated.

CONCLUSIONS: In this prospective, open-label, proof-of-concept clinical trial, ustekinumab treatment was associated with a reduction of signs and symptoms in active AS and was well tolerated.


Found this study from 2013
But no Crohns loading dose was used
And they waited 12 weeks from 2nd to 3rd shot

my little penguin

Staff member
Rheumatology key messages

20–40% of patients with AS do not respond to TNF inhibitor therapy.
Secukinumab is the first IL-17A inhibitor approved for active AS.
Both Janus kinases and IL-12/IL-23 inhibition show promise as targets in AS patients.
This one from 2018
Says it shows promise as well


Therapies in ankylosing spondylitis—from clinical trials to clinical practice

Hasan Tahir

my little penguin

Staff member
Data from TOPAS prompted the initiation of a multicentre phase 3 trial programme. The first of two randomized phase 3 trials investigated the efficacy of ustekinumab compared with placebo in patients with AS, following an inadequate response or intolerance to TNFi therapy (TNFi-IR) [34, 35]. Patients received ustekinumab 45 or 90 mg s.c. at weeks 0 and 4, and then every 12 weeks to week 52. Patients in the placebo group received s.c. placebo injections at weeks 0, 4 and 16 before being re-randomized to ustekinumab 45 or 90 mg, with s.c. injections at weeks 24 and 28 and every 12 weeks thereafter [34]. The second phase 3 trial included patients with non-radiographic axial spondyloarthritis, and compared ustekinumab (45 or 90 mg) with placebo. Up to week 52, ustekinumab was administered according to the same schedule as that described for the phase 3 study in AS. Placebo was administered every 4 weeks until week 24, when patients were switched to ustekinumab [35]. These studies have been terminated since ustekinumab did not achieve key endpoints in a related study [34, 35].


Found it
So basically given the PSA dose at 45 mg to 90 mg EVERY 12 WEEKS

If it’s only given every 12
I can say from what I have seen with ds alone
The drug is NOT effective at all for arthritis even at every 8
Let alone at every 12
Once he switched to every 4 things improved

My point is they may see different results of the dose was higher and given more frequently
Vs using the lower PsA dosing which is not going to be effective at all


Staff member
Oh absolutely - I think if rheumatologists could prescribe a higher dose, it MAY work. But the fact is that most patients with a rheumatic condition aren't going to get more than 45 mg every 12 weeks or if they're over a certain weight 90 mg every 12 weeks.

90 mg every 4 weeks may have worked but there are no trials to support it. In the early study, yes it did seem to work. That was a proof-of-concept study though and a very small study - 20 patients!!

But until there are studies done again in AS, we cannot say it works. Most patients with AS do not have IBD and so they would get the PsA dose - 45 mg every 12 weeks. At most, 90 mg every 12 weeks.

We have been following Stelara for years - since 2012. We have talked to several top AS researchers all over the country whom study AS. All have used Stelara and none have had good results. ALL told us not to bother trying it, that it was unlikely to work for my daughter with severe axial and peripheral arthritis. We asked rheumatologist after rheumatologist and every single one said that in their experience, it did not work for AS or spinal disease in axial SpA.

Unless the pharmaceutical company is willing to fund trials with a higher dose - like 90 mg every 4 weeks, we just don't know. It may work for certain patients, but so far the evidence shows that it does not work - the study was terminated for axial SpA/AS.

JAK inhibitors and IL 17A and IL 17F inhibitors are what's coming next for AS - they are seeing very good results. IL-23 inhibitors also failed for axial disease, which is why I think Stelara is unlikely to work for most AS patients.
OMG you are really informative and thank you so much for this information. My son had MRI on all his spine and the Si joint shows some erosion, and both hips have arthritis. He has been going to physio 3 x a week for 7 months now and that has helped, however, when he started Remicade late September, he instantly was walking much more easily. The rheumatologist didn't actually indicate he has AS, but she did say that we caught it early enough to treat it from getting worse, but it would have been better to get it earlier, or course. We lost almost 2 years with first the chiropractor, and then waiting for neurologist appts as the family doctor thought it might be neurological. It was only because he could no longer walk and tore his groin muscle that we found at at emergency via xrays that he had arthritis of both hips. It was daunting, and then the crohns which he had mostly asymptomatically for years - probably 5 years at least as he never went through the stage of eating a lot, and never had a very huge appetite. Remicade has been helping. I can't believe what you must be going through having your family with AS and IBD. You are very knowledgeable and thank you for sharing.
Oh, as well, my son was negative for b27 and the rheumatologist indicated that it was the IBD that was probably first and then came the arthritis, although the arthritis presented itself first. I have read on enteropathic arthritis and often this is the case. I applaud you on all your knowledge and thank you again for sharing.
Hi Jo-mom. Sorry to hear that it took your son so long to be diagnosed. That's common with kids and teens, unfortunately.

My daughter also started Remicade right away after her Crohn's diagnosis, and, like your son, the initial dosing wasn't enough for her. Her doctor reduced the dosing interval from 8 down to 6 weeks, and also added budesonide (an oral steroid) and methotrexate. My daughter was also already on EEN at that point, and she continued on that. With all those changes, my daughter started to do better, and after a few months, she was able to drop the budesonide and EEN. She still takes methotrexate, and she has needed an increased dose of Remicade several more times over the years, but it's still working for her 4 years later.

I've never heard of repeating the loading sequence, but I think it's likely to help in your son's case. Hope the new dose works well for him.
Welcome Jo-Mom💕 my son is 12, he wa diagnosed with crohns age 9 and juvenile spondyloarthritis age 10. He started on 6 mp initially then switched to remicade and methotrexate because of the JSpA diagnosis. After the crohns diagnosis he continued to have elevated sed rate and joint pains for months. GI doc kept saying it was arthritis due to crohns but he wasn’t having GI issues at the time. Maya and MLP really encouraged me to get a rheumatologist consult which was the best decision ever. His MRI also showed erosions on bilateral SI joints. Looking back, we noticed him walking different and wanting to rest a lot during soccer. He said his legs bothered him but we thought it was just growing pains. So I’m not sure if he had arthritis or crohns first but not sure if that matters too much. After only a couple remicade infusions his sed rate normalized and joint pains disappeared! It was like a miracle! After loading dosing he received remicade every 4 weeks and weekly methotrexate. After being symptom free and normal sed rate for a few months then remicade was decreased to every 8 weeks and we continued weekly methotrexate.

He has only had one set back in sept2018 had a ruptured appendix and so after surgery needs to be off his meds. He was off remicade for 11 weeks and started to get the achy legs again and sed rate was back up in the 50s. He just had remi end of December and next infusion is February so I am hoping to see that sed rate come down.

How often does your son receive remicade? Maybe he needs it more frequently. Does he take any other medications for crohns or arthritis?

Sorry your son is going through this❤💜💙I’m glad you joined the forum🤗🤗🤗.


Staff member
Please ask your rheumatologist before seeing a chiropractor!!! They are NOT recommended for people with AS or axial spondyloarthritis. They can really hurt patients because they are typically not well-educated on AS (patients have inflexible or less flexible spines and often low bone density) and they can cause a lot of harm.

As for what came first, honestly, it's hard to know. It's a chicken and egg situation. I used to think that my daughter's arthritis came first but now I'm not so sure - she always gut problems - had trouble gaining weight, had diarrhea on and off. Her symptoms were mild and on and off, so her pediatrician always said it was a virus.

My girls are HLA B27+ though.
Thank you for your replies! My son will now be on 4 week infusions with remicade and is also taking 3 mg of budesonide as well. He is doing well now, and my son was also walking funny into his teens but we thought it was just how he walked, and also would mention that his one leg hurt, and it wasn't consistent and we too thought it was growing pains. Wow! If only we knew what we knew now. He is pretty happy now because he is able to crouch again and climb stairs and walk normally. He was struggling walking last year and attending university is difficult if you can't walk around campus. Things are much better. The dosage for remicade is still being figured out. He had 3 loading doses, and couldn't make it to his first maintenance dose - had a major flare (he never had one before) - and ended up doing infusion 3 weeks earllier. Blood test revealed remicade was almost gone from his blood so doctor now ordered new loading doses, and then 4 week intervals. I believe it will be at same dose for now. Nothing makes me happier than knowing he is happy.
Hello, Jo-mom! I'm afraid I don't have great info like the rest of this learned group :) but I just wanted to let you know you are not alone out there! My son is 22 and was dx with Crohn's in summer of 2017. It is such a daunting disease and so hard on the sufferer AND the family! He also is on Remicade (ever since his diagnosis) and according to his doctor is in remission but he still is in moderate pain every day. :(

His doctor put him on 2 different rounds of steroids...wish I would have known how nasty that stuff is! He's been off of them for almost a year and he is still overweight from them! Which is ridiculous because he is able to eat only one meal a day usually.

So just wanted to warn you about the steroids!

Yes, if I could trade places with him, I sure would.

Take care! :)


Staff member
I would also caution you about steroids. Budesonide isn't treated like a "real" steroid by GIs but it is one! Our GI used Entocort as a maintenance med. Additionally, my daughter was on low doses of Prednisone and Medrol over 5-6 years (one long course of steroids per year pretty much) and at the time, was on 9 mg Entocort and 12.5 mg Prednisone.

She developed Cushing's syndrome - rapid weight gain, puffy moon face, stretch marks etc. In addition, she developed adrenal insufficiency which can be fatal. We saw many endocrinologists and had to rush to the hospital several times to get her IV steroids to prevent an adrenal crisis. Our endocrinologist said most rheumatologists and GIs use steroids too liberally and do not taper slowly enough.

I wish I had known about adrenal insufficiency as a risk of steroids, but I don't know if we could have avoided steroids anyway -not without risking more joint damage.

Jo-mom, the other important thing with AS is exercise. It's really important that your son stretch daily and do some aerobic exercise. It can be low impact - swimming is great. Biking or using an elliptical are good options. Strong muscles support joints better which equals less pain. Physical therapy can really help if he does the exercises regularly. It helps to start with someone helping you and then transition to doing the exercises on your own.

One rheumatologist summarized it to my girls: "Use it or fuse it."
Thank you Maya - yes my son now goes to a physiotherapist regularly - no more chiropractor. I also read that they are not recommended with AS. And I hear you - chicken or the egg.
I read up on steroids and adrenal insufficiency. My son is on only 3 mg of Entocort (steroid) and I am hoping that he can get off that once his remicade levels are better. Interesting, we tried tapering him from one a day to one every other day, and he noticed right away that his bm's changed, and instead of things getting back to normal, at the same time, remicade levels were leaving his body sooner than normal, and he went into a flare. We thought it was because he tapered his budesonide, however, learned later it was the remicade levels. I couldn't wrap my head around why tapering so slowly would be so drastic. We definitely learn through these experiences.

I also learned about how important stretching and exercises are for AS. My son goes to physio 3 x a week where they do exercises, and he does stretches at home on most of the days he doesn't go, however, he could be a little more active! He is an adult (20) and you can only nag so much. At least he is doing something and is walking more.

You must have many days of anxiety with your two daughters. How are they doing these days?
I want to thank all of you for being so supportive. You are all such a wonderful group. This forum is far the best I have come across! It sounds like you are all moms here... No dads?
I have a question - for those of you who have children who were successful on Remicade, was the success always consistent, or were there sometimes small setbacks, or slight symptoms or increase in bm's, appetite loss, the usual stuff at any time even while doing well on Remicade overall? I realize sometimes frequency and dosages can be changed, but I am asking for those who were on a set schedule that seemed to work - if there were sometimes setbacks, mini flares. Just like to learn as much as possible. Thanks :)


Well-known member
Yep! Bodies change. Remicade is a large molecule drug and our GI explains that it changes a little over time. Lots of bobbing and weaving here for both my girls with a total of 11 years on Remicade.


Staff member
I think it depends on how often symptoms are occurring. If out of the blue, your kiddo has two days of belly pain and or two days of diarrhea, I would watch and wait. If it gets better by itself, I wouldn't worry. We'd call it a "mini-flare" or blip and move on.

If the kiddo continues to have symptoms then we update the GI.

If it's hard to tell because symptoms come and go, then keep a record of them. If it's happening consistently, it could mean your son needs a higher dose of Remicade or an increase in frequency.

But generally I'd a couple bad days here and there aren't too concerning. As long as there isn't fever or bleeding, I'd watch.

This is a good question for your GI because the instructions on when to call/email depends on the kiddo's situation. For example, my younger daughter is on two biologics so we are extra cautious if we think she has an infection - I'd take her to Urgent Care or the ER a lot faster than I would for my older daughter on one biologic.

So I would ask your GI about this.
My son has infusion this Friday and had his last dose almost two weeks ago. His appetite is good but I noticed he's using the bathroom more. I don't want to pry and ask him what's going on as he seems to be well, but I just thought to ask you experts. It could be as simple as him having a little more fibre yesterday, but you know how it goes, you start over-thinking. I guess I am thinking ahead and wondering if he will make it to 4 weeks after this Friday's infusion. I shouldn't get ahead of myself. One day at a time.

I didn't realize that you could be on two biologics at one time.


Staff member
It's still pretty unusual- doctors try not to use them unless you have failed everything else. My daughter had failed everything available that treated both her Crohn's and arthritis. Her arthritis is fairly severe (she will have a joint replacement this year at 22), so we switched to a biologic with a different mechanism to treat the arthritis and then added an anti-TNF for Crohn's.

But she had really no other options - she had failed everything else. Luckily, the combination of two biologics seems to be working for her - to some extent, anyway.


Well-known member
Yeah, I think the "two biologic" use is really more to treat two different conditions if one is not responding well. My older daughter might try two biologics because her psoriasis is just not responding at all to Remicade, as a matter of fact there is a theory that Remicade caused it.

We totally get the paranoia when things pop up. Stomach issues are very common in the general population so it could be anything. We generally just watch and note. Does he get labs at every infusion? Fecal calprotectin? Is there a lab that correlates well with inflammation for him? For both my daughters blood labs aren't that telling but fecal calprotectin is pretty reliable. So if that goes up, then we know something is going on. They get fecal cal with every infusion.

my little penguin

Staff member
Same here
Two biologics but completely different conditions
Not both for Crohns
Ds has a very rare condition which requires its own biological med since the pathway is so different from the pathway for Stelara

Lots of “blips” here for a day or two
Also since he just started every 4 weeks it will take a while to build up and stay on top of things (as in a couple of infusions )


Staff member
I have seen trials of two biologics for refractory Crohn's and colitis - usually Entyvio with something else (Humira, Remicade). I don't know if there are results yet though.

I know for severe RA, dual biologics have been studied. Using two biologics at once ups the risk for a "severe adverse event" - like a serious infection. And in RA, the benefit of using two at once is not clear.

It will be intersting to see results in IBD.
Hi my fellow parents - just sitting at Tim Hortons (big in Canada) waiting for my son who is getting his remicade infusion - another loading dose . He is slowly gaining weight and maybe one day will weigh more than me. I weigh under 127 lbs by the way! He is 20 and has never weighed more than me but I think he is getting very close finally. Let's hope this continues. He started Remicade weighing 108 lbs. (3 1/2 months ago).
So I am always a little anxious on the day of his infusions (it's getting better) - I think I read too many negative forums where people posted their reactions, but I have to remember that people who do well don't usually vent or post.
I have no questions, just filling my time with people who have been there, done that.... You guys are experts and have gone through so much with your children. I can't imagine having more than one child with a chronic illness. I am not normally a worry wart but I have become the biggest and ugliest wart ever! He's an adult but I feel like I am back at when he was a newborn. I am certain my middle-age anxiety will subside...."worry" - is such a wasted emotion. :shifty:
Thank you for listening my fellow carers of people they love.:heart:

my little penguin

Staff member
One thing that really helps is “shakes “ in addition to food even on remicade
These can be diet shakes etc...
It’s just extra calories that’s easy to absorb
Tesscom “child” is in his 20 and used shakes

Some adults use boost or ensure
Just gets the extra nutrients in plus food to gain weight
Between biologics and neocate jr/peptamen jr my kiddo has gained
Over 110 lbs (now 155 lbs at age 15 ) and grown close to 12 inches (he was dx at age 7 only weighed 50 lbs for close to two years prior )

So big fans of biologics here
Plus “shakes”
Hope the infusion went well! (I often check the forum during infusions too!)

My daughter has gained 60 pounds since diagnosis, while on Remicade, so I hope that your son has similar success. She was never able to drink shakes, but she used formula through an ng-tube for 5 months at the beginning, and it really helped with her weight gain.
Yes the infusion went well and I dropped L at university right after. He has gained about 17 lbs in the last 3 1/2 months so is doing well. The fridge does have ENSURE plus but he doesn't want to drink them because he claims he is eating and drinking enough (which is true). Found out that he yet has another loading dose in 2 weeks and then every 4 weeks after that. I guess the GI doc wants to ensure he gets enough Remicade in his system. I will let you know when he finally weighs more than me! LOL!
Glad to hear that all your kiddies have done really well on this medication. :ybiggrin:


Staff member
Glad it all went well!

Another idea for extra calories... if you google Boost Recipes, their site has a number of recipes using Boost shakes (I'm sure you can use Ensure). I haven't made any, so can't really vouch for them but, from what I remember, most were baked goods (muffins, etc.)



Well-known member
Just a word of caution with weight gain and Remade. Remade is dosed based on weight i.e.: 5mg/kg all the way up to 10mg/kg. However, the GI's order the total amount and usually round up or down to make a complete vial.

So with a good deal of weight gain and no change in total med dosing, you could actually end up getting less drug than what you are supposed to. It has happened to quite a few of us where the kids gain, gain, gain and the GI's forget to change the total amount ordered. Easy enough to monitor by asking the nurse what the total dose is and then down the math.
Thank you - so far, L is weighed right before his infusion and the calculate the amount based on his present weight so I believe they are giving him exactly what is needed. I appreciate your post. :)
You guys all rock!!!!:heart:

my little penguin

Staff member
They calculate the amount and weigh prior as standard procedure

But ... then based on the weight the Gi rounds up to the next vial
Or down to only one vial .
So they don’t waste meds
There is a window of weight where this happens
Abive that your at two vials vs one vial if that makes sense
You need to ask how many grams he is actually getting
And his weight in kg


Well-known member
Just wanted to add that typically the weight the day of the infusion is usually too late for the orders to the pharmacy unless the nurse or med assistant who weighs him, then contacts the GI and then GI writes up orders and sends to pharmacy.

The orders are usually written up and sent to the pharmacy before you even step foot in the center.

Perhaps the nurses double check weight against what was ordered and if it causes the mg/kg to go down they call the GI and alert them but usually this isn't the case.

my little penguin

Staff member
When ds was on remicade
The orders were not entered and sent until after the weighed the kiddo
And you had to wait on the pharmacy to create the Iv bag
Took a lot long but ....
Weight was day of infusion to determine vi
Did the same thing for other infused drugs as well


Well-known member
You were spoiled! We have been to 4 different hospitals and none of them ordered based on weight day of. The closest we came to "day of" was at our current hospital and they just didn't call pharmacy and request meds to be sent down until you actually walked through the door (just in case you didn't show up. guess) and even that takes FOREVER! This hospital does rapid (1 hour) infusion. Still takes 3+ hours start to finish and they don't even have to wait for Doc to enter the orders! In CT, they had the drug waiting for us, no rapid infusion and we were in and out faster than the rapid centers!


Staff member
At our hospital, the way it was ordered was using the weight from the child's last visit - which is not always accurate! My daughter once lost a significant amount of weight between infusions. She was on 10 mg/kg of Remicade and due to CDiff. she lost like 8 lbs very quickly. So if they had used the weight from the past visit, she would have gotten more than she should have. It wouldn't have hurt her, but we did inform the nurse, who had to get a new order from her GI which took forever...

I have no idea on how many vials were used - I always assumed kids got the dose prescribed by the doctor. So if my daughter is 43 kg, would she get 430 kg or 400 kg if you round down?

I don't know what the system is now since she has been off infusions for several years. But I would hope it's better than using the previous visit's weight since most kids only see their GI 3-4x per year and some can even just see their GI every 6 months. And of course, kids are growing machines, so a kiddo who has a growth spurt could easily gain 20 lbs in a year.

Wanted to add - my daughter has a long and complex history regarding weight loss and was severely underweight for a while. We added tube feeds and they made a world of difference! She said she had way more energy and she slowly started gaining back the weight she had lost. She even continued tube feeds into college and her roommates were very supportive.

She was a teenager when she started tube feeds - I think about 17. She absolutely refused to and let her weight drop further and further. Her story is on the forum somewhere, but anyway, it led to 1 new diagnosis (Gastroparesis or delayed gastric emptying), 3 hospitalizations, and every kind of feeding tube that exist (I think) - starting with a NG tube, NJ (naso-jejunal), GJ (gastric jejunal) and then finally separate G and J tubes, which were surgically placed in her stomach/ jejunum (middle of the small bowel).

She was very sick by the time she finally started tube feeds, and they made a HUGE difference very quickly - she felt better getting nutrients she needed and even just getting more calories. She had more energy, became stronger and slowly gained the weight back.
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When we used to go to the children's hospital for infusions, E's prescription was written in mg/kg, and they would weigh her right as she arrived and then use that weight to determine the day's dosage. It took a while (maybe 45 minutes) to get the Remicade due to that. Also, they would round to the nearest quarter vial (or 25 mg), which was great. I assume that they would use the rest of the vial for other patients that day, rather than just tossing the rest, but I don't know.

We moved to the adult outpatient infusion center once E turned 13, and their procedure is different. Her Remicade prescription in the pharmacy isn't actually weight based there--it's just a total. Her GI sets a total dosage (which she does calculate based on her weight), and that's what E gets no matter what her weight on the day of infusion. As she has gained weight, or flared, her doctor sets a higher total dose. We see her doctor every 4 months, so it hasn't been a problem to keep the dose appropriate to her weight. When we first started there 3 years ago, they had just started serving kids, and the pharmacy would only round to the nearest 100 mg. The pediatric GI's requested more control over the dose, and now they will do 50 mg intervals. I don't know what happens to the other half vials--if they are tossed or used for other patients.
Hi everyone - warning - this will be long.... I want your opinion on this one. I called the GI's office twice and sent two emails and hopefully I will get an answer or an appt although this is not an urgent matter.

My son is currently reloading with remicade - due for last reloading January 28 (these reloads were closer together - 2 weeks apart) and then he will be on a 4 week cycle. Currently he is taking 3 mg (one capsule) of Entocort as well. Here is some history - when he started with remicade, he was on 2 caps (6 mg) Entocort. About 10 days after his 2nd infusion of remicade (end of October) - he dropped from 2 caps to one cap and one day later, he immediately noticed the difference with his BMs (looser and more often) - however, it seemed to get better a few days later, and then things got worse. We didn't know it at the time, but he was beginning to flare, however, his 3rd loading dose of remicade was going to happen and as soon as that happened, everything was good again.
So at this point, he is on one cap of entocort only, and now it was time to drop it and since he reacted the last time he tapered, I called the pharmacist and he advised one every other day would be a good idea this time. So this was 2 weeks after his 3rd infusion. Again, 24 hours later, L noticed BM change, nothing major, but things didn't get better, they got worse, and we kept thinking it was because his adrenals had to re-adjust, and didn't realize at the time that he was metabolising the remicade too quickly.. So we are now just over 4 weeks away from his 4th infusion (at this point he was scheduled for 8 week interval) - and symptoms were getting worse. This is went we called the GI who was in Pakistan for a month, but through his support staff, his infusion was moved 3 weeks earlier, and the blood test revealed hardly any remicade in his blood.

Let me point out that the GI ordered him to go back on full dose of entocort just before he went in for that emergency infusion, however, we told him that L never did well with the full dose (3 caps) - and basically L went back to only one cap instead of one every other day.
So now he has reloaded a few more times, going in on January 28 - and not sure if he should taper off that last capsule of Entcort. Things are going so well at this time. I will try contacting GI again but thought I would ask you guys.
He has been on Entocort for 4 1/2 months total - one cap for the last two months. My thoughts are since he has infusion on January 28, perhaps taper to one ever other day a week before that infusion, or should I just wait for GI's instructions. He never did say how long to continue taking it. Am I worrying too much - will a few weeks more of one cap daily really be that harmful? I really don't want a repeat of what happened last time. Should we wait for his first 4 week cycle (7 weeks away) - when he gets blood test to see how much remi is in his blood? I would assume the GI would have instructed us by then.

What are your thoughts? Again, L is doing great right now. I will call GI later today - they seem to be lax in getting back and that is frustrating!:rof:


Staff member
My thoughts are since he has infusion on January 28, perhaps taper to one ever other day a week before that infusion, or should I just wait for GI's instructions. He never did say how long to continue taking it. Am I worrying too much - will a few weeks more of one cap daily really be that harmful? I really don't want a repeat of what happened last time. Should we wait for his first 4 week cycle (7 weeks away) - when he gets blood test to see how much remi is in his blood? I would assume the GI would have instructed us by then.
I doubt a few more weeks will hurt. It's really when you use steroids for the long-term when it's an issue. I know there are some GIs that use Entocort as a maintenance medication and we did do that too with my daughter. However, for reasons I explained earlier (she developed Cushing's and adrenal insufficiency, which can be fatal and low bone density), it's not a good idea. Any endocrinologist will tell you that it's certainly better than using long-term Prednisone but at the end of the day, Entocort is still a steroid.

I would much more concerned if your GI was planning to use Entocort in the long-term - like for years. But 7-8 weeks more probably won't make a difference in terms of adrenal insufficiency.

I would check with your GI on what he wants you to do, but to me it makes sense to taper only after he's had the infusion and it has kicked in.
Thanks Maya - I was thinking the same thing. Actually his first infusion after Jan 28 is not 7 weeks away but 5 weeks away from today. I think it's best to wait for GI's instructions on this one.

:dance: I love these emoticons - I feel like a super banana mom!
Thought I would update you on what the GI said. We just came back from seeing him today. He told my son to stop taking Entocort now. He also said that L's bloodtest revealed almost no remicade in his blood and he believes that because his colon was very inflamed, that the remicade was being used more quickly. As mentioned before, he is reloading and the final one is on Monday, and then every 4 weeks. We will continue with the 4 week cycle at regular dose and hopefully that will continue to work. The GI will check levels of Remicade again in 6 months to see if changes need to be made.

Fingers crossed the dropping of Entocort goes smoothly, and fingers crossed that he can last the ful 4 week cycle without any reoccurrence of symptoms. He is doing really well at this time. Thanks for listening. :)


Staff member
I'm glad they are trying more frequent infusions - fingers crossed!! I hope he is able to get off the Entorcort soon!
Yes, tomorrow is the first day without taking Entocort.... I just hope that it goes well -- timing for infusion is good as it is on Monday so his body will have full force remicade and I guess dropping Entocort right now is good timing. We'll know more in time. Hopefully his insides have been healing since that horrible setback in early December. :thumright::rosette1::ybiggrin::ybiggrin::ybiggrin::ybiggrin::ybiggrin::dusty::dusty::dusty:
So I am sitting at Tim Horton's again waiting for L to finish his infusion before dropping him off at his university. He stopped taking Entocort yesterday and I noticed he had a few trips to the bathroom early this morning. He didn't want to share anything with me when I asked - he wasn't in the best of mood - but said he was "fine" - that word never means "fine" when people use it. Anyway, he is getting a fresh dose of Remicade and hopefully the withdrawal symptoms from the Entocort will subside quickly. Everytime he has dropped it down, he has this very same reaction, so hoping his body needs to readjust for a few days. At least we know that he has enough Remicade in his body as it is happening now. Next infusion is 4 weeks. I hope that he can have a good 4 weeks. Has anyone any experiences with withdrawal of Entocort? I tried searching on this forum but for some reason, it isn't working.
My daughter has been on entocort twice, both times for about 3 months. She tapered off slowly and never had any symptoms as she tapered. I hope that your son's Remicade infusion today will help with any symptoms that he's experiencing.

my little penguin

Staff member
Some are more sensitive to steroids than others
Entocort withdrawal can be the same as prednisone withdrawal
Sometimes a day or two is needed
Other times only one dose of steroids and adrenal insufficiency

Ds gets headaches body aches stiff joints(he has arthritis )
Crohns symptoms /sweets syndrome symptoms
And it’s not pretty for two days
Third day he is improved and day four things level out
This anytime we lower the taper dose of steroids
We call it the steroid toddler temper tantrum
His body wants to stay at the level of steroids

He does have adrenal insufficiency but during his last big wean we didn’t know that part
He does much better now with weans since we wean the prednisone then wean to a stress dose of hydrocortisone for 3 days then off
Far less side effects
PDX, how slowly was the taper? L was only on 3 mg Entocort. Let's see what the next few days bring. His adrenal glands need to re-adjust. I don't like steroids. :(

Thanks guys!:thumleft:
Jo-mom, she actually tapered faster than your son. She was on 9mg for about 3 months, and then went to 6mg for 2 weeks, and then 3mg for 2 weeks, and then done. One thing that might have helped her with her first taper is that she had just done a course of EEN, which can also do a great job of reducing inflammation.

Her second course of entocort was used during a flare, but she was in much better shape that time compared to when she was diagnosed, so that might have made that one easier for her too.

I am no expert on steroid withdrawal, but I think there can be 2 different things going on during a taper. One is actual withdrawal, where your body has reduced its own production of cortisol due to the presence of the steroids that you're taking, and you need to give your adrenal glands a chance to ramp back up. The other is just when your intestines are still not healed, so when you go off the steroids (which were reducing inflammation), you get Crohn's symptoms again. If your son is just experiencing more bathroom trips, it might be the latter.

If it is the latter, he may want to give EEN a try, because--like steroids--that can reduce inflammation in the short term while you wait for Remicade to kick in.
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Staff member
You can taper slowly with Entocort. My daughter was on it for a long time and when we tapered, we did 3 mg per month. For the last 3 mg, she went from taking it daily, to every other for a little while. Then we stopped.

But you can go even slower than - you could do every other day for 2 weeks, then every 3 day for two weeks and so on.

My daughter developed adrenal insufficiency after being on Prednisone on and off for 6 years and Entocort for over a year. It can be very serious, so if he continues to feel "off," his GI needs to know. Adrenal insufficiency is hard to identify sometimes because the symptoms overlap with Crohn's symptoms. My daughter's symptoms were severe fatigue, diarrhea, nausea etc.

She now tapers from any steroids on to hydrocortisone and then tapers off that. Her cortisol levels and ACTH are monitored carefully.

But before she was diagnosed, and we tapered more quickly, she did have withdrawal symptoms. They typically they lasted 2-3 days and then she stabilized. Each time we went down, she would have symptoms, but as long as she stabilized after a few days, we continued with the taper.
Thank you both - the GI said just to stop taking it completely as he was already taking 3 mg for awhile. We will see how it goes...since he had his Remicade infusion today, I'm hoping he will settle in his normal in a couple of days.


Well-known member
I would keep an eye or rather ear (since he is distant from you) on him. Bathroom symptoms caused by adrenal insufficiency will not resolve with Remicade. My daughter has also had some issues with tapers that were too sudden or quick but like the others have said if it is just a day or two the it is fine. Any longer or more severe and I would ask him to get in to be seen for possible adrenal insufficiency.
Thank you - today was a good day, and for sure, I wouldn't want to let too much time go by if things weren't okay. Let's hope the good days continue......forever!!!! :)
So my son had his last remicade infusion 3 weeks ago and is due for another in one week. This would be his first 4 week cycle after his re-induction of remicade. He couldn't make it to his first maintenance dose of 8 weeks and had a rushed infusion at 5 weeks after a major flare. He had re-induction - 0, 2, 4 and now at 4 week cycle. A couple days ago, he told me his appetite is still good but isn't feeling as hungry, and that his bm's have changed a bit - still formed but starts off watery and then formed. I was planning on moving his infusion to this Friday as he is on Reading Week and won't have to miss school.

He just told me now that there was a little blood in his bm - just a little he said. My heart sank. I will call GI tomorrow and I am hoping they can test his remicade levels again. When they checked last time (before his re-induction) - I wasn't told the number but they said he hardly had any remicade in his system.

So, L is feeling good - still eating well - not having many bathroom runs - but obviously things aren't 100% (change of BM's and one blood in stool incident) and I'm really worried. He is no longer on Entocort and currently on 5 mg/kg Remicade every 4 weeks - although we haven't even gotten to the first 4 weeks.

Remicade is really helping him - he has gained almost 20 lbs and it has really helped his arthritis tremendously. I believe his dosage needs to be increased. I know things still can be tweaked, and medication added. This is the kind of thing that will really affect a good night's sleep!

Try not to worry too much yet--it is still very possible that Remicade will work well for your son, once his intestines finally are healed. I know I sound like a broken record, but EEN is something that can really help to jumpstart healing, and then Remicade can take over. I know that EEN is easier for a kid than an adult like your son, but have you talked to him about it?

Another thing that might help is adding methotrexate. Has his doctor talked about the possibility of combination therapy? And, as you mentioned, increasing his Remicade dose could also help. 5 mg/kg is the lower end of dosing--that could go up to 7.5 or even 10 mg/kg.

I hope the infusion this week helps!
I will try to get hold of GI today although it's always a challenge. He never mentioned combination treatment. I am hoping they can test his blood levels so he can go from there.

How does the EEN work? I have read many forums where it is mentioned. I really don't like L taking steroids, and he only has been exposed to Entocort and even that was not something we were comfortable with. I am worried that steroids could harm his osteoarthritis hips further.

Today is Calprotectin test sample day (never has had one before) - the GI ordered that when we saw him a few weeks ago and suggested doing it closer to the infusion date. How did you parents do this for so many years - I know it's easier.....:ybatty:

my little penguin

Staff member
Is formula only
No solid food
GI can give you samples of formula
Then they write a script for x number of cans per day to meet nutritional needs
Some kids drink it all by mouth
Others use an ng tube at night and pull the tube in the morning

Most with crohns need semi elemental (peptamen or peptide )
Vs elemental (neocate jr ,vionex(adult) or elecare )
Elemental tastes beyond foul most need a tube
Ds drinks neocate jr orally as supplemental 50% calories plus food daily
But has switched over to een with it more than once

Een typically is 6-8 weeks no food
Then 90/10 as maintenance (90% formula -10% food)
When no other drug is used


Staff member
Jo, hope you were able to move aptmt! And that L is holding up, ie no more symptoms!

EEN is not easy to do... not discouraging it's use at all, I think it's a great treatment option but, in some ways, I do think it's easier with children as we have more control over their environments.

S did do it at 16/17 years old. He inserted the NG tube each nite, ingested all the formula overnight and removed tube upon waking. During the day, he was allowed clear fluids - would take broth to school in thermos to 'eat' with friends and school kept freezies for him in their freezer. In the evening, he had more broth for 'dinner'. He doesn't like jello but was allowed to have that as well. But very tough to manage around social situations. And, he was hungry by early evening - distraction (or more broth :rolleyes: were the only options). No one ever suggested it but, perhaps a semi-elemental shake to offset the hunger would be allowed??
Update - L does have infusion this Friday - was able to move it with no problem as I think you can go a few days either way - it made sense for more than one reason. His symptoms have not gotten worse, if anything, he was very hungry yesterday, and he doesn't appear to be going to the bathroom more than usual - all good (although I think things are little off when he goes). I did call the GI office yesterday to discuss running a blood test before his infusion. The staff there said to call back on Thursday (tomorrow) as the GI will be in the office and I can easily pass a message to him.

I do think he is doing better at this time frame than when he reached this point of time before.

Yesterday we dropped off cal-protectin test so we'll see what the numbers are like on that. He's never done that test before.

So things aren't too bad. We'll see if I can get in contact with GI before the infusion. I'm not as worried right now. I guess knowing that infusion is only a couple days away and seeing that he is feeling and doing rather well makes the difference.

Thank you. :)

my little penguin

Staff member
Ds did his first een it was semi elemental
No tube
He drank two peptamen jr for breakfast. Took two to school for lunch in a thermos
One after school
Two for dinner
And one at bed
So in his case he wasn’t hungry at all during the day
Chewed ice and had dumdum lollipops
Pure sugar on crushed ice to chew as well

That’s it
Still hard
He was only 7 so he didn’t think he had a choice
This last time he was 13 so he spoke to Gi
And agreed to calm his gut with een for 2 weeks
And then add bits of food
So way different for teens and young adults
Thought I would update you on my son. I really dislike how this disease changes your life. I've become a little anxious since L's diagnosis because things can be going along well and then something changes quickly. L is currently on 5 mg/kg Remicade every 4 weeks. I have now noticed a pattern. He does well for 3 weeks, and then I can see how his appetite decreases and his bathroom visits change. Once he gets his infusion, he is back on track, and then it happens again. last month, I called a few days before his infusion to let the GI know - asking perhaps for a blood test to check his levels. He also had a fecal cal protectin test done but never heard back from GI on that so I am assuming it wasn't terrible, but who knows? What's with these doctors. So yesterday I called the GI doctor again, and the staff told me to send an email to their clinic and they would forward it to the doctor. I am wondering if he actually got the last message when i called last month. In the email, I suggested that L might need a higher dose - perhaps 7.5 mg/kg would do the trick for the 4 weeks. I think so. I always get anxious when that 3rd week approaches, and L shouldn't have to go through symptoms although he said he can tolerate it. So hopefully something happens. Overall, he is doing better but not 100% and tomorrow is the infusion and it can't come soon enough. Last time, I had it moved up 3 days because he was off school, but this time it wasn't Those extra days make all the difference. So I just needed to share because I had one of those nights of tossing and turning. He was tired earlier the last two nights and everything worries me these days. This is why I joined this thread - appropriately named.

The infusions are also helping with his arthritis and that continues no matter how it doesn't always work 100% for his crohn's. I really do think that an increase in his dose will take care of that. Let's hope the GI does too. So frustrating that I can't just talk to him easily. I feel like I am disturbing the office when I call although they don't make me feel that way.

Thanks for listening.


Staff member
7.5 mg/kg certainly isn't unreasonable. Lots of kids and adults are at 7.5 or even 10. Hopefully, the GI agrees.

As far as emailing his GI... personally, I think this is great! This is how I've communicated with S's GIs (both ped and adult). I've always believed (although I can't verify 100%) that any communication, such as an email, must be included in the patient's file. As such, I've always felt assured that the GI would see any message I sent. Plus, I don't go through the stress feeling that I'm being a pain in the butt everytime I call the office. Communicating through email has worked very well for me.

Glad his infusion is tomorrow! :)


Well-known member
Since he is good after infusion and then gets worse right before it definitely sounds like he just needs more med. That is an easy fix. Good for you detective mama.

I also NEVER call the office. Messages are too easy to forget, lose etc. We always email. The doc gave us his email and his nurse. We usually email the nurse so if it is something easy she can ask him as he passes and just email us back. If it isn't easy, she forwards it to him for his response. At our new office they ask us to correspond through my chart so everything is automatically in the chart. It is also just as easy.

Would be nice if you could get that infusion amount bumped up for this one but you might have to wait a bit.

I am not very familiar with your son's story but another way to deal with burning through the med too fast is to add Methotrexate. It could slow down the rate at which the body metabolizes Remicade, help prevent antibodies from building up and treats the Crohn's and rheumy or skin issues. That said, both my girls were on it and it didn't help them.
Yes I do feel like a Detective Mama! I am acutely aware of what is going on - sometimes too much so. Thanks Tess and Crohnsinct. I have been following your posts on your daughter Crohnsinct and really feel for what your daughter is going through and for what you are going through. I certainly hope that she starts feeling better soon. In a perfect world, young people should never have to deal with stuff like this!
If I remember I think 5mg/kg is the lowest dose. My son started at 8mg/kg every 4 weeks then moved to every 8 weeks and is doing well with that. I think there is room for adjustment with your son just keep at it with the docs because sometimes they want to “wait and see” how things are. Hugs to you and your son🤗🤗

my little penguin

Staff member
Lowest dose is 5 mg /kg every 8 weeks
Highest “normal “ crohns dose is 10 mg/kg every 4 weeks
So he can go up easily in dose within standard dosing .
That said a lot of docs prefer to wait to see if the higher new dose takes effect

Each time we raise Ds dose (remicade /humira and now Stelara)
It doesn’t last the full time at first
But over time it slowly starts to last longer
It’s weird
Talking months of dosing
It’s a balance
How many dosing at the new for him higher dosing has he had ?
5 or more ?
Or only 1-3 ?
Good luck woth the Gi
Interesting as L never made it to the full 4 weeks even when he was in the induction phase. In the induction phase, dose 1 and 2, he was doing great - although he barely made it to the 4 weeks even then, and then when it was time to wait 8 weeks, this is when he flared at about week 4 (but symptoms began coming back in week 3) and he was pushed to an infusion 3 weeks early. This is when blood test revealed he hardly had any remi in his system, so GI did re-induction again, but this time it was 2 weeks, 2 weeks later, and then again 2 weeks later, and then at 4 weeks. That was last month and by 3rd week, some symptoms returned so because he was on Reading Week, it was in his best interest to move his infusion to Friday instead of Monday (3 days earlier) which probably made a difference. I did contact GI office last month and passed message but never heard back. This month, same thing, week 3, and the couple extra days that he has waited, there has been an increase in his symptoms. We are about to leave for infusion in half hour. He has already used washroom 2-3 times. Seems that he goes most in the mornings. I don't always want to ask what's going on, but I pretty well know. So since I didn't hear back from GI again (sent him email) - I will be going to his office while L is getting infusion as it is only about a 10 min drive from infusion site and I have a couple hours to wait anyway. I do really think that 7.5 mg/kg will make the difference. I didn't realize that it takes a bit of time for new dosing to take effect.

Thank you my little penguin and jelly loves peanut butter. I have to say that you mothers/fathers - although I think there are mostly mothers here, are a great source of information with all your experiences you have had with your kids. I really do appreciate it.
So much for my idea of visiting GI office while L was being infused. I told him my plan and he felt strongly against it, so as he is an adult, I will respect his wishes. So I am sitting at a coffee shop now. L started experiencing nausea last night - I'm certain he was starting a flare and thankfully infusion is happening now. I think I will reach out to our remicade coordinator and see if she can get things rolling for next time. The squeaky wheel gets the grease.


Well-known member
Who said it is a parent's job to raise strong, independent adults....I say take that chapter out of what to expect when....and while you are at it put the midnight toilet diving chapter in or how about tips and tricks to get your kid to drink disgusting stuff (prep, MRE's, formulas etc).

Crossing our fingers here that Remicade kicks in soon or that your son sees things your way. Maybe if you have a chat with him and he agrees then he can send the email and will feel more like he is in control and it was his idea all along?
You made me laugh! As you know, L had his infusion this morning. When I picked him up to drive him to university, he said that he can instantly feel it in his gut as soon as the infusion starts, so he pretty well feels better instantly. That is always a relief but I will not put this task to rest. I actually did suggest that he contact the GI himself via phone or email this morning, so reading your suggestion put a smile on my face. Of course, you're a mom and know all the tricks. I should sleep better for now. Let's see how interested my son is with dinner tonight. :ylol:
Okay, I guess the GI didn't ignore my email although timing could have been better. The BioAdvance Coordinator (Remicade) -who I reached out to yesterday via email, emailed me today and said that the doctor ordered blood test to check remi levels at the next infusion. That's 4 weeks away! I wanted this done last infusion (Feb) and now we have to wait for April and then hopefully dosages change for May. I emailed coordinator asking if it was possible to get blood test a week before next infusion so that if dosages need to be adjusted, that he can have the new higher does next infusion.

Although L is feeling better, it's like he was starting into a flare a day before the infusion and his guts are recoooperating right now. It is likely to settle in a couple days. I reallly don't like this rollercoaster ride. At least something is being done about it. He noticed that I was typing away and asked what I was doing. When I told him I belonged to a support group of parents with kids with IBD, he shook his head like I was a little cookoo. I assured him that he was anonymous.


Well-known member
LMAO! Just wait until you tell him who your friends are....my kids think it is hilarious: Dustykat, My Little Penguin, Maya142....sounds like we are secret agents.

Well, I am glad they are taking notice although not as fast as we mama's would like. The really good news is that he is responding and it looks like just a tweak is needed.

I forget if we mentioned this here or not but inflammation sops up the drug like crazy and this is why at the beginning a lot of kids need to be infused more frequently. As their insides heal you will find that you can start moving infusions farther apart or gradually lowering does a little. Then if inflammation creeps back in you make a move. My girls have been so all over the board with regard to dosage and interval that I have been known on occasion to forget the interval and had to have them check her chart. Perhaps the GI is hoping that there is enough healing going on that he will make it to 4 weeks this time? It sounds kinda early to me but I have to keep reminding myself that they are the ones with the degrees, fellowship training and years of experience with hundreds of patients. :voodoo:
OMG you made me laugh - those names do sound like spy names! Jo-mom is the newest spy.

Yes the GI's are the ones that have the education and medical training and experience but they don't live with the daily ins and outs. My gut is telling me that he metabolised the drug quickly right from the start - but I guess we can't tell a specialist that our motherly intuition knows more than they do! ha ha

Let's hope he has a better appetite at dinner. When that comes back, I know he is better.

Oh I should have invested in Royale or Cottenelle stocks. I recently started buying the huge 400plus sheets at Costco. Did you go through a lot of toilet paper with your girls? :rosette1:


Well-known member
LOL! Did and DO! I have an Amazon automatic shipment of toilet paper delivered to O on the reg!

O recently had a friend visit her from another university and this girl is under investigation for IBD...O said, "I better pick up some extra toilet paper".

I also happen to know where every public restroom is in NYC, SF, Atlanta and LA...and we may or may not have stopped at constuction site porta potties after hours and given store clerks a lesson or two in Crohn's so they would open their darned locked bathrooms.

When you need some levity go check out the Much Ado thread here in the parents section...pretty sure there is a "you know you are an IBD parent when" string of posts.
Thanks for making me laugh and putting a smile on my face. I'm having one of those days where I feel so powerless and L's situation isn't even that dire, it's just so hard when things aren't "normal". I know you understand this and have had many years of experience, as all your other "spy friends" do. :)
Okay so I'm a tad confused. What is the difference between metabolizing through a biologic quickly and building up antibodies? Are these two different scenarios or are they the same? I thought that building up antibodies meant some sort of bad reaction - hives, lupus, etc, whereas metabolosing it more quickly meant just that your body needs more. Enlighten me if possible peeps.
San Diego
Okay so I'm a tad confused. What is the difference between metabolizing through a biologic quickly and building up antibodies? Are these two different scenarios or are they the same? I thought that building up antibodies meant some sort of bad reaction - hives, lupus, etc, whereas metabolosing it more quickly meant just that your body needs more. Enlighten me if possible peeps.
Both result in low drug levels but they operate by different mechanisms.

Metabolizing the drug, as it's name suggests, consists of the drug being broken down and/or excreted through normal metabolic mechanisms - usually broken down by the liver or leaked out into the large bowel and excreted in the stool, or some combination of both.

In the case of the formation of antibodies, the drug is being attacked by the patient's immune system as though it were a foreign invader. The biologic drugs are large proteins and thus if perceived as "foreign" by the immune system they will stimulate the production of antibodies that bind specifically with the drug and inactivate it.

This can get a little confusing because the biologic drugs themselves are antibodies, grown in culture outside the body, that are directed at some part of the immune system (such as TNF or integrin) with the goal of tamping down the overactive Crohn's immune response that is wrecking the gut. So the anti-drug antibodies are actually one antibody that specifically binds with another antibody.

The biologic drugs are usually either mouse antibodies and that have been "humanized" by recombinant DNA techniques or fully human antibodies. Either way they still tend retain subtle characteristics that are slightly different from the patient's own proteins and thus might be detected as "foreign" by the immune system, stimulating the formation of anti-drug antibodies. Keeping the drug concentrations in the blood high enough can often swamp out this relatively weak immune response and prevent the anti-drug antibodies from getting the upper hand. Similarly, adding azathioprine of methotrexate can also help prevent the formation of anti-drug antibodies by further tamping down the patient's immune system.

Build up of anti-drug antibodies can result in hives or more severe adverse reactions in some of the more serious cases, but often anti-drug antibodies can quietly go about their business of inactivating the drug and clearing it from the blood with no noticeable effects. Thus, often the only way to detect and measure these anti-drug antibodies is with a laboratory test.
And here I am again - L is flaring. His next infusion is on Tuesday where he will be given a blood test to check remicade levels. He started feeling a bit off just two weeks and a day after his last infusion, but it was the same day he was studying for one of his final exams (which was the following day) - he felt a little nausea, and didn't have much of an appetite. I chalked it up to anxiety/stress of the upcoming exam. The following day, had his exam, and his appetite was better, although not 100%. So this was Saturday - on Sunday, he is back to studying for a Monday exam - same thing - decreased appetite - he said his bms were still solid. After his Monday exam, his appetite seem better but again not 100%. His next exam is next Monday, so I was hoping he would get back on track. On Tuesday, he seemed to be better, but by Tuesday evening, I could tell by how he ate dinner, he wasn't back on track, and since then has eaten very little, has had nausea, and the past couple nights, bathroom trips. He said that he is having formed stools and sometimes he goes, and it's just liquid. He appeared to have some sort of virus as well these past few days, so I am really unsure if it's everything. In the past, he always starts getting symptoms around the 3rd week.

Last night, after he got up to go to the bathroom and claimed it was a solid bm, I could hear him vomiting at the same time, although he had nothing to vomit. He had a major night sweat. Is this a normal thing for crohn's people? I am wondering if he had a virus and that major sweat was the last of it.

I will know soon when he wakes up how it's going. I don't know if I should bother calling the GI as his infusion is on Tuesday anyway and he already ordered the bloodtests. L has had more toilet trips than usual but nothing outstandingly high at this time.

Poor kid, he was admiring his body, and now he is definitely losing a few pounds through these last few days.

I am considering perhaps moving the infusion one day earlier, after his Monday exam (if he can be accommodated).

How do you mothers/dads do this? I am a constant roller coaster of worry. I'm so glad I am retired and don't have to wake up early because I certainly wouldn't be able to do that.

Just need to let this out.


Well-known member
Aw man! The thing I hate most about Crohn's is that the symptoms of IBD overlap the symptoms of hundreds of other things so it is so hard to tell if it is definitively Crohn's. All the symptoms you describe could definitely be Crohn's but hard for us to tell. You just have to know your kid's symptoms. Are all of those his usual symptoms?

It definitely could be nerves from exams. I know my girls always get looser bowels when they are nervous.

It could be IBS from the nerves. IBS does swing from, solid to loose and could cause nausea.

It could be a virus, lots of that going on around here.

I think the thing that makes me think Crohn's is that he is good for awhile and then get bad, rinse repeat.

I love that he is scheduled for infusion so soon. I would definitely write the GI and describe what you are seeing. This way when all his blood labs come back they can interpret them with a full picture of what is going on. For example if inflammation indicators are up but not over the level without your description of what is going on they may not act but with the full picture it might sound some alarms.

How do we do it? Experience I guess. I will send you a pm in a few.
Thanks crohnsinct - good news is that he woke up hungry and no nausea but that can change. He did just drink a smoothie and it seemed to go well. I think I will do that. I will email the GI at least with what's going on. I did send him an email last month and as a result of that, he ordered the blood test. I am so glad that the infusion is only days away.
His symptoms are a little different than in the past but with some similarity (if that makes sense) - he also did have a bit of minor cold symptoms and the chills a couple days ago, but they went away, so this is why I'm not sure what to think.
Oh well, let's hope for a good day ahead.


Staff member
Is he registered with the Office of Disabilities on campus? If not, he really should be. They can arrange stop-the-clock testing, so he doesn't lose testing time if he has to go to the bathroom a lot. That may help decrease his anxiety about exams (if he doesn't already have those accommodations).

They can also help reschedule exams, if he is unable to leave the bathroom or is just not feeling well enough.

His symptoms could be anxiety due to the exams, but to be on the safe side, I'd tell his GI. The lack of appetite, nausea, vomiting, the bathroom trips at night could also all be due to a flare. The night sweats too - my daughter always has those when she is flaring.

Those two symptoms - night sweats and BMs at night - tend to be red flags for IBD. Has he had a Fecal Calprotectin test done recently? If not, that might be another thing to ask his GI about.


Well-known member
^ ah yes! Good one Maya142. Fecal calprotectin will help you flesh out where there is inflammation or if this is just a nerves thing.
He had Fecal Cal-protectin test done a couple months ago and we never received the results from the GI.

I will have to send him an email right now. We'll see how he feels comes his next exam- and take it from there. It's a delicate topic.....

Hi Jo-mom sorry to read things are tough at the moment. I am afraid I can't give much advice being a newish diagnosed mum too. I do know that I react in the same way when my daughter has any kind of niggle crohns related or not. I think these hiccups are something we will need to get used to and we will eventually. When that time comes it will feel more part of our life and we may not panic so much,it's all so new to us. One thing to be sure of is that the GI team will do everything they can to keep our kids well. I would imagine with L doing exams at the moment it has played a big part with how he has been feeling. It does sound like things are looking a bit better for him and I hope that still stands. Our Consultant is very much for stool testing to know where things are heading. He checks my daughters every 3 months to keep a check on things, I would imagine that's the norm with everyone.

Remember look after yourself to keep strong. Do something nice just for you. This worrying time is normal for a newly diagnosed mum but with time it will become easier to deal with.
Thought I would update you on the latest. I contacted the GI regarding L's test for Remicade levels and found out through the BioAdvance coordinator that GI ordered L to reload once again with Remicade as his levels were sub-therapeutic. He hasn't ordered an increase of dosage however and I'm not sure why (he is already on the 4 week cycle). And I'm not sure what sub-therapeutic actually means in terms of numbers, however, I am glad that we will continue with Remicade and hopefully after the reloading doses, L will be back on track.

In the meantime, L is done with university for now and is very happy to get a part-time job for the summer. So I'm glad the stress of classes/exams are done with for 4 months.

Thanks for all your support. :)


Well-known member
Oh man! You just knew it didn't you? :stinks:

Remind me what dose is he on? My daughter went to 10mg and was actually prescribed 15 mg every 4 weeks for a bit. Remind me (yeah I am old) he is on Mtx or Aza for joints right? Those are supposed to help slow drug clearance. No antibodies?

I have never heard of reloading three times but hopefully it works.:goodluck:
L is on regular dose 5mg/kg every 4 weeks- nothing else. Remicade seems to be really helping his arthritis even when his crohn's starts acting up around week 3. I haven't read anywhere about a third reloading either but I am no expert. I have suspected for months that L needs an increase in dose....but I'm no expert (yes I said this twice) Let's see where this goes. Now wouldn't it be nice to actually have a conversation with the GI about all of this? Seems like it's not that easy to do. He had last infusion just over two weeks ago and will start his reloading again in a couple days. All I know is that he is doing well at the moment, and I'll take that. So I am guessing that his trough levels were low with no antibodies or low antibodies but perhaps better than the last time he was tested in December. I am guessing that GI is trying this reloading to see if L can maintain at 5 mg/kg. And my last guess is if he cannot, then an increase in dosage? Who knows - it's time to play what will the GI do next?

Sorry to hear about what your daughter is going through.
This is what I have asked and wondered. I really don't know why dosage isn't being increased either. I have emailed GI twice asking for a blood levels test and finally that happened two weeks ago, and suggested that I thought L needed an increase in dose. I really don't know what his reasoning is, but I plan to find out. When I learn, I will share with you all.


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I vote increase dose! Or add Methotrexate.

What was his level? Just curious. The Remicade prescribing literature says 4-7 is the goal but many, many ped docs have found out that over 7 is needed for most of their patients. At around a level of 12, O was golden.
I have been voting for an increase to dosage as well but I guess I have no electoral power! I wasn't given any numbers at all. The BioAdvance Coordinator (who is the go between with GI and myself and who organizes the treatment) advised me they were sub-therapeautic. I did email her asking if she had numbers but I will also email GI asking for more specifics and inquiring if increase of dosage is in the cards. The last time L had levels test, the coordinator advised he had almost no remicade in his levels - so I am assuming (boy we do a lot of that) - that levels were lower last time. Once I learn more, I will share with you so that we can all learn together.
Yeah, I've never heard of repeating the reloading doses either--hope it helps, though. Sorry that it's so hard to communicate with your son's GI. I wonder if it's because he's an adult. Has your son given you official authorization to get info from the doctor?

Glad the school year is over for him!


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That's odd - I've never ever heard them redoing the loading dose 3 times! Especially without increasing the dose - his body has shown that he clearly needs more medication. If you've already tried reloading once and that failed, then you definitely need to increase the dose.

The third reloading may give him a "boost" but I really doubt it'll keep his disease under control - his levels will just go back down again in a couple months. It seems clear that he is metabolizing the medication too quickly, so why not just increase the dose to make sure he's getting a therapeutic amount?? Without doing so, reloading doesn't really make sense.

Have you considered a second opinion?
I have to get some answers from the GI. After the 2nd reloading, he did move the dose frequency to 4 weeks, but clearly now the dosage is questionable. Definitely need to see if his intentions are to increase dosage after the reloading. :ywow: We have a few weeks to sort this out....

Now that L is finished with school, I will suggest for him to be more proactive with reaching out to GI. Ya right.
The GI office actually contacted us today and the GI would like to see L on Saturday. Let's see what the plan of action is. L had infusion today. He really wants to remain on Remicade so hopefully it's as easy as GI recommending dose increase moving forward. I sure hope so. Every time we have any specialist app't, my heart sinks a little bit with dreaded worry, but it goes away after I have a logical conversation with myself. The app't is a good thing.
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I am so glad there will be some conversation. Pointer: write down your questions/concerns etc. Go through them one by one. Too often we go in and the GI motions something we didn't think of and we get derailed and if we didn't write down our questions we leave having not asked half of them.

5 mg is really a low dose for kids. Our GI said that about 85% of kids can't control disease with 5 mg regards of interval. You have a lot of room to make dose adjustments so I really don't think your son has to worry right now. I also don't think that the GI would be trying reloading for a third time if he was thinking of abandoning Remicade. But in the words of Jo-mom, "what do I know".

Good Luck Saturday and make sure to let us know what happens in this round of Outguess the GI.
Really appreciate your comments - I agree - I don't think he would have ordered more Remicade if he was thinking off dropping it.
Thanks for the tip of writing down questions/concerns. I will definitely fill you in on how the app't went.

How's O? I will check the other thread you have been updating us on. I believe she had app't yesterday?