New to hyrimoz (biosimilar to humira)

[elenak]

Hello to everyone. I'm Elena and I live in Greece (please be kind of my English). I'm so happy to find this forum, I am wondering why I didn't find it last year, when all I did was to search for every detail could get for crohn's disease (untill I got sick from all I've read and stopped it).
My son, V. now is 13 years old, he was diagnosed with Crohn one and a half year ago (at his 11.5 yo). He had never had diarrhea or complains about pains, his symptoms were loss weight and decimal fever every afternoon.
He started with azathioprine and pentasa, but after 4 months Crp increased, had cramps and he started remicade every 8 weeks (at first with azathioprine and later with methotrexate) until April the 4th where his indicators of inflammation were too high (crp 40 and calprotectin 424). He started hyrimoz 40mg two weeks ago (then he had 4 injections = 160mg) and today, after two weeks, he had 2 injections (=80mg). In two weeks, he is supposed to have his regular dose, 1 injection every two weeks.
Last week he didn't want to eat anything, he doesn't have pains, he has cramps. He also feels a little tired all the time. His doctor says that this is normal and that the new medicine hasn't start working yet.
According to your experience, when will it show if it works for him? My biggest fear is the time we lose in case it won't work at the end.
In the meanwhile, he loses weight (3 kilos until now).
Thank you in advance for your help.

 

[my little penguin]

Did they ever increase the dose of his remicade to 10 mg/kg every 4 weeks ? Or 7 mg/kg every 6 weeks ?

humira takes 3 to 5 months before you know it is working .

until then are they giving him oral steriods like prednisone as a bridge ??

also you can add formula - where your child drinks formula only no solid food . This heals the gut let’s them gain weight while you wait for humira to start working .

In the US those formulas are
Boost and pediasure (polymeric easiest to drink)
Peptamen jr and pediasure peptide (semi elemental-easier on the gut to absorb but taste is worse )
Elecare jr and neocate jr (amino acid based ,elemental formula ) hardest to drink some need a ng tube but easiest for gut to absorb

most do formula only for 8 weeks
This heals the gut and gives the humira time to work .

nothing in Gi land is quick
All meds takes months to see if they are working

the two drugs your child Gi chose are both anti tnf so same type of mechanism to treat
There are different types of drugs such as entyvio if the disease is in the large intestine and Stelara if it’s more on the small intestine

My kiddo was dx at age 7
Now 18
Humira worked for 5 years
Stelera he has been on for almost 5 years this august
He takes Stelara plus methotrexate now

good luck

 

[crohnsinct]

Hi and welcome! Your English is perfect so please do not worry there.

I was going to say pretty much all the same as above. Usually before abandoning Remicade there are other things to try. Increasing the dose or shortening the interval. You could go to as little as 4 weeks and dose at 10 mg/kg. Many kids do not get a response at the 8 week interval. The dosing recommendations are based on adult trials and kids metabolize the drug a lot fast so many kids need shorter intervals. Also, inflammation eats up the drug faster so at the beginning you usually need a lot more drug and then can move down and out as healing occurs. Perhaps your country and insurance system won't allow more frequent infusions? Is your GI a dedicated IBD. specialist? If not, it is possible he/she didn't know this.

Humira can take a little while to work. I am concerned that symptoms are ticking up though. Since drugs take a while to work, GI's tend to try to induce remission with faster acting measures like steroids or Exclusive Enteral Nutrition. These also help the drugs work better and faster as they have help attacking the inflammation and not so much of an up hill battle. The CRP of 40 is a bit high by our lab standards but not knowing what your lab is using it is hard for me to say but given that and the calpro of 424 I might be inclined to think he needs a bridge therapy of steroids or EEN to help get things in line.

 

[elenak]

Thank you so much for your answers! It's so good to discuss with someone that has faced exactly the same situation.
Remicade per 8 weeks worked OK for almost a year but he made antibodies to the infliximab, so, as the doctor said, we had to give up on it, there was no use of increasing the dose or shortening the interval (always according to the doc).
Here in Greece, pediatric gastroenterologists are only in hospitals, my son is attended by the similar specialized on IBD clinic, there are only children with Crohn and Ulcerative Colitis attended there.

until then are they giving him oral steriods like prednisone as a bridge ??

No, he hasn't be given anything, in fact he cut the methotrexate when he started hyrimoz. This is something that I have to discuss with his doctor.

Perhaps your country and insurance system won't allow more frequent infusions?

No, that's not an issue, I've met children in the clinic that have remicade every 4 weeks but they haven't made antibodies to it.

He was given Modulen (that's the only formula I've heard here) at the beginning but not as an exclusive feeding, he had 2 shakes per day. In Greece usually use Modulen as exclusive feeding in cases where the IBD patient has too many diarrheas, my son had never diarrhea as a symptom. I suggested him that he could start Modulen again, at least 1 shake/day but it makes him nautious, he never liked it, so he rejected it. I will discuss it with the doctor too, though.

the two drugs your child Gi chose are both anti tnf so same type of mechanism to treat
There are different types of drugs such as entyvio if the disease is in the large intestine and Stelara if it’s more on the small intestine

Exactly! There was an issue whether he should continue with anti TNF or with entyvio, but in the end they chose to try hyrimoz. Entyvio is the next step as I can understand. It's strange though, as my son's problem is that he has stenosis at the small intestine, and in fact, the inflammation is at the final ileum. This is why I'm so worried, in case that hyrimoz finally don't work for him, we will have lost 3-5 months and before he gets into entyvio should have new endoscopy which is something that needs al least a month to arrange it. I didn't know that stelara could be used by children.

As I can see, we have the same protocol here in Greece too, all the mentioned medicines are known to me.
The new for me is that it's urgent to ask why he doesn't use another medicine as a bridge until the hyrimoz acts.

Thank you SO much for your help. I really appreciate it..

 

[elenak]

The CRP of 40 is a bit high by our lab standards but not knowing what your lab is using it is hard for me to say

Forgot to answer this part, the normal crp is up to 6 here, his previous measurement (8 weeks before the 40, at the exams of his previous infusion of remicade was only 0.3) so is a huge number indeed. We also pay attention to red sedimentation rate (don't know if that makes sense to you, is how I found it translated), the normal rate is up to 20, his previous measurement was 9 and the last 80!!!

 

[Pangolin]

A sedimentation rate of 80 implies a lot of inflammation or a serious infection. My son had a sed rate near that when he had an abscess. I'd ask the doctor about metronidazole and amoxicillin to see if it helps.

If your son can't tolerate Modulen by mouth, you could try a feeding tube. An exclusive formula diet (EEN) is very effective at reducing inflammation.

If he hasn't had imaging in a while, you should see if you can get an MRI to see how bad the end of the small intestine looks. Sometimes surgery may be necessary if the medicines aren't making it better.

 

[elenak]

The last MRI enterography was on May 2021, one year before. He has only one endoscopy made 1 and a half year before, the one that showed the Crohn.
I'm really worried now...

 

[my little penguin]

Ok now it makes more sense
If your child was doing ok on remicade but gad antibodies it makes sense to move to humira

modulen is semi elemental similar to peptamen
Small bowel disease does not typically have diarrhea
But
Big butt formula only -just modulen 8 shakes a day does work
Your child is nausea because he is inflamed in the small bowel so nothing wants to move through the way it should
Most of my kiddos diasese is there as well
Except some rectum stuff

definitely ask for 8 shakes a day if modulen
Within 2 weeks he will start to feel so much better
Then you can switch to 50/50
Half shakes half food
We did this as a boost for my kiddo

or the other options is oral prednisone
Which will also knock down the inflammation
But will take weeks as well

entyvio is NOT recommended for small bowel disease like your son has
Entyvio takes 12 months to work

stelara is used for small bowel disease
But still can take 6-8 months

hopefully humira will work
Quickly but sounds like he needs full formula only (just modulen 8 shakes a day -no solid food )
Or steriods
Hugs

 

[elenak]

I've just send e-mail to his doctor, thank you so much for your answers and support. Gosh, it's so difficult to deal with it...

 

[Maya142]

I also agree that he needs a "bridge" therapy - either steroids or EEN. The thing with EEN is that he has to be on board - otherwise with teens it's too easy for them to sneak food. If he's unable to drink the shakes, using a feeding tube is a possibility. My daughter was very hesitant to use a feeding tube, but she couldn't drink enough formula to maintain weight, much less gain. Her GI suggested an NG tube - one that is inserted through the nose into the stomach. It sounds worse than it is - it's a tiny, thin flexible tube. It can be inserted every night and removed in the morning, so no one at school has to know (feeds where done overnight). A nurse will teach your son how to insert it. Otherwise it can be inserted and left in and then you would change it every few weeks. Some kids prefer to insert it nightly and others prefer to just keep it in and not bother with inserting it every day. My daughter said her nose and throat were sore for a couple days as she got used to it, but then after that it was painless and she could insert it in less than 10 seconds. Our children's hospital taught kids as young as 6 to insert their own tubes! If he had trouble drinking Modulen, then a tube might make things a lot easier. After getting used to the tube, my daughter declared it was WAY better than drinking and she would never try drinking formula again.

He also may need a different formula - something like Peptamen Jr. or Neocate may be easier to tolerate because those formulas are more broken down and so more easily absorbed by the gut. It's definitely worth asking about if Modulen continues to make him nauseous. My daughter had to switch to Neocate which is broken down into amino acids and so is easily absorbed.

EEN does work well to induce remission, while you're waiting for Humira to work. Humira can weeks to months to work - usually it takes a few months. My daughter was on it two separate times and the first time it took about 6 months and the second about 3 months. So a bridge therapy to control inflammation while you're waiting for it to kick in is important.

Steroids can work relatively quickly, depending on the dose. It usually takes 2-3 days or so before my daughter is feeling better with a high dose (like 40 mg of Prednisone). They can also use IV steroids which kick in even faster.

There was an issue whether he should continue with anti TNF or with entyvio, but in the end they chose to try hyrimoz. Entyvio is the next step as I can understand. It's strange though, as my son's problem is that he has stenosis at the small intestine, and in fact, the inflammation is at the final ileum. This is why I'm so worried, in case that hyrimoz finally don't work for him, we will have lost 3-5 months and before he gets into entyvio should have new endoscopy which is something that needs al least a month to arrange it. I didn't know that stelara could be used by children.

With small bowel disease, Humira actually makes more sense than Entyvio - it is more effective than Entyvio for small bowel disease. And your son did respond to Remicade clearly, so it's very possible that he will respond to Humira. Switching to a different type of drug is absolutely necessary when your child does NOT respond to anti-TNFs at all but your son did, so Humira may still work. Doctors will also switch when you've been on multiple anti-TNFs (typically 2) - then they find using a drug with a different mechanism is better than trying a third anti-TNF. Based on your son's blood work, it's pretty clear he responded to Remicade if his CRP was 0.3 then and is 40 now and his sed rate was 8 and is now 80.

I also wanted to add that once you make antibodies to one drug, doctors usually add something like Methotrexate to prevent you from making antibodies to the next drug. It is less likely he'll make antibodies to Humira (Remicade tends to be the worst offender for antibodies since it's made from mouse protein, Humira is humanized protein), but it's still possible and MTX should help with that. Plus, it may also help control his disease.

If Humira does not work, then the next best option is Stelara. It's not approved for kids with IBD, but it's used here.

 

[my little penguin]

Modulen is semi elemental and similar to peptamen jr

 

[elenak]

I also wanted to add that once you make antibodies to one drug, doctors usually add something like Methotrexate to prevent you from making antibodies to the next drug. It is less likely he'll make antibodies to Humira (Remicade tends to be the worst offender for antibodies since it's made from mouse protein, Humira is humanized protein), but it's still possible and MTX should help with that. Plus, it may also help control his disease.

That is something that doesn't make sense, my kid stopped mtx when he started hyrimoz.

The more I read here, the most angry become, we are supposed to be in the best on IBD pediatric clinic in Athens and I now see how many mistakes have been done. For example, two days before December's infusion of remicade, the drug's level was 7.6 and the antibodies of infliximab were 62. His blood tests were low and normal. Now I feel that if we had shortened the interval then, nothing of this would happened!

Anyway, the doctor's answer to my e-mail was that Modulen would help (nothing about exclusive feeding) and if he can't tolerate with it, he could try Fortimel (it has many flavors and is probably more easy for him to drink it). (Do you know it?) She added that before the next injection in two weeks, my son sould have adalimumab levels and antibodies test. And of course that I must update her about his clinical condition.
That's only, she replied nothing about steroids or other brigde drugs.

I cannot ask for feeding tube, I first heard it here from you, I don't think that is something that happens here. I've seen with my own eyes a little girl in the clinic who was wearing pampers (aged 9) because she had too many diarrheas and the doctors and her parents were forcing her to drink Modulen orally, no word about feeding tube (that poor girl had only Modulen for feeding).
It's so difficult for me to tell her by e-mail that I found some things that make sense to me in an american site and in some way doubt her. On the other hand, I'm furious because I see that the path she follows is wrong for my boy.

Today my son had two Modulen shakes. I know that this is not a sollution but I cannot give him drugs since the doctor did't say anything about it.
We are so behind...

 

[elenak]

If Humira does not work, then the next best option is Stelara. It's not approved for kids with IBD, but it's used here.

OK, that will not happen here. Stelara needs special approval here in Greece, there is no way to be given to children. Maybe that's why she was between humira and entyvio. So my only hope is hyrimoz to work eventually...

 

[my little penguin]

Stelara needs special approval here for pediatric crohns as well
It’s not FDA approved for kids
Only for adults
That said my kiddo was 13 or 14 when he started it
Entyvio is only approved for adults as well here
Forstips is polymeric I believe similar to pediasure which also has lots of flavors

sorry your Gi isn’t talking things through with you
We have found you can be at the top place but if your Gi isn’t willing to discuss things it doesn’t matter
Our original Gi was actually a stomach specialist not even a crohns Gi as a specialty
He knew crohns but it wasn’t his area of interest
Ds now has a specialist Gi in just crohns due to moving
I think it’s a toss up between the two Gi ‘s

 

[elenak]

sorry your Gi isn’t talking things through with you
We have found you can be at the top place but if your Gi isn’t willing to discuss things it doesn’t matter

Exactly! This is why I'm furious now! Until now everything made sense, I had no need to doubt or check her, but now I see that we have problem.
The biggest problem is that I don't have options, as I have said, there are only two clinics specialized on IBD for kids that we can go. I first visit the other as the biggest pediatric clinic and they didn't even test him for possible intestinal problem, they let us go after they did some general tests without finding what was wrong.

 

[Maya142]

For example, two days before December's infusion of remicade, the drug's level was 7.6 and the antibodies of infliximab were 62. His blood tests were low and normal. Now I feel that if we had shortened the interval then, nothing of this would happened!

To be honest, I think you are right. I think upping his dose and/or shortening the interval between infusions would have worked. His antibodies were not sky high, they were quite low. But it is possible to retry Remicade. Yes, some kids do have reactions and it does not work. But others tolerate the infusions just fine. My daughter is on Remicade for the FOURTH time - she has had to retry meds because she ran out of options (she has severe, aggressive arthritis that is very hard to control as well as Crohn's). She has not had any reactions when retrying it so far. We do have to use higher doses and do infusions every 4 weeks, but other than that she tolerates it just fine. We also know another kid who had an infusion reaction that was mild and has been given IV Benadryl and IV Solumedrol before each infusion and has been on it for 9 years! She's doing great.

So if Humira does not work, going back to Remicade is a possibility, especially considering he did initially respond to it well.

Adding Methotrexate is also a possibility. I don't know why your GI stopped it, but most GIs would continue it at least initially, since you are changing biologics. Some GIs use it for antibodies, but others don't and just monitor the dosing and antibodies and still others use it initially, usually for 6 months or so, both as a bridge till the new biologic can kick in and to prevent antibody formation but then discontinue it.

I would not rule out a feeding tube...they may not be used commonly, but I'm sure they are used. They are definitely used in other parts of Europe and the UK. You could ask about an NG tube (naso-gastric tube). My daughter could not drink enough formula, so it was absolutely necessary for her and helped a lot. She also needed an elemental formula - she had diarrhea and nausea with semi-elemental formulas.

It looks like Modulen is semi-elemental (thanks @my little penguin!) and from what I can see Fortimel is polymeric - it contains whole proteins (including cow's milk in some formulations). It will likely taste better but will be harder to digest than Modulen, which has partially broken down proteins. Elemental formulas like Neocate and Elecare are broken down further into amino acids. I feel like if he isn't tolerating Modulen then Fortimel probably won't work - at least the polymeric version (if you can find a semi-elemental or elemental version, then that's better).

The biggest problem is that I don't have options, as I have said, there are only two clinics specialized on IBD for kids that we can go. I first visit the other as the biggest pediatric clinic and they didn't even test him for possible intestinal problem, they let us go after they did some general tests without finding what was wron

Some clinics let you switch doctors within the clinic. We have done that with a different specialty - endocrinology. Not all clinics allow it but it's worth asking about.

 

[elenak]

Hello to everybody. V is having two shakes of Modulen and two Fortimel daily the last 10 days, he says that he's feeling better. Actually, he has only one solid meal daily. Today, one month after starting Hyrimoz, he had blood tests, the usual and drug's level and antibodies. Haven't been able to take sample for calpro yet, he goes to the bathroom too late for take it and get it to the lab, but hopefully, we will manage to do it!
I've just been sent the answers for regular blood tests, everything is normal except of course of CRP - now is 30.9 from 40 - and sed rate - now is 55 from 80 -, in two weeks I will have the results about how he is reacting to Hyrimoz yet. Tomorrow he will have the 1 injection only, it is supposed to be his regular dose. Should I be happy for knowing that inflammatory markers are declining or keep worrying about the high levels? I really need your opinion!


After all the things said here and your help in setting my mind clear, I sent an aggressive e-mail to his doctor, she called me and had an interesting conversation with her. I've just e-mailed his results and I'm waiting her respond.

 

[my little penguin]

Fecal caloprotectin sample can be taken at night in a sterile container and stored in the refrigerator till morning when you can take it
We were told as long as it’s within 24 hours to get it to the lab

numbers for crp are recent inflammation (24-48 hours ) and sed rate is past two weeks
So not good those are still high

just indicates he is still flaring

 

[crohnsinct]

We freeze cal pro samples. They are stable at room temp for up to 7 days so freezing them gets them through transit to the lab and the days offsetting on the bench.

The inflammatory markers are still elevated but good they are going in the right direction. Cautiously optimistic.

 

[elenak]

Didn't know it about freezing the sample for calpro, never needed to ask since he used to be so well-programmed, always in noon. Thanks for the info, by Monday I'll get it done.
I know his numbers are still extremely high, I was so anxious about these exams today that I was hesitated in opening the lab's mail. I felt relieved with the decline for the moment but OK, I'm on depression mode again...
His vitamin D3 is extremely high, 52.4 (normal rates 20-50), the previous measurement at 04/04 was 16 and his best rate before was around 23.

Another thing I found searching and comparing all his blood tests and things have happened that could cause this flare: At 03/03 he had the first vaccine of Gardasil, do you think that this could have something to do with all this? I remind you that at the infection of remicade at 07/02 everything was perfect and at 04/04 the rates were too high.

 

[crohnsinct]

No, no, no…we are not saying the values are extremely high. They are elevated. But CRP and sed rate are not specific to the GI tract. Anything could be keeping those values raised. Even an injury or slight cold could increase those numbers. Please do not be depressed. The good news is they are coming down. He only just started to take weekly Humira. Healing takes time. Good sign that his Vitamin D is in range. That means he is absorbing it!

 

[my little penguin]

Right just elevated
My kiddo had an ear infection once with similar crp /sed rate so …. Could be minor
Parents normally don’t see bloodwork values for regular kiddo stuff
Once they did his standard crohns bloodwork but forgot he was taking amoxicillin for a minor ear infection or something
Liver numbers were above normal
I was beside myself
Doc just laughed it off saidd”oh amoxicillin does that all the time “
So stuff does go on in the blood of normal kids
We just never knew

try to relax
It will get better

 

[elenak]

That's the problem, he didn't had any more medication or feel any other pain or flu signs that would justify elevated inflammatory rates, only the Gardasil (I found out yesterday) and the fact that on March he started to change all the new teeth that should be changed at 10-12yo his mouth is almost empty now and new ones have started to come out. The doc didn't pay any attention to it, his dentist neither.

Good sign that his Vitamin D is in range. That means he is absorbing it!

That's why I mentioned it, he took 25.000iu/weekly Vitamin D for 3 months, but I was almost sure that he couldn't absorb it due to his flare.

THANK YOU SO MUCH!

 

[Maya142]

Any vaccine can cause a flare...though usually flares aren't so severe that medications need to be changed. In your son's case, it seems more like he was metabolizing Remicade too fast and had developed antibodies, so I'm not sure if the vaccine played a part in the flare.

V is having two shakes of Modulen and two Fortimel daily the last 10 days, he says that he's feeling better. Actually, he has only one solid meal daily.

Are you working with your GI or a dietician to guide you on how many shakes (and calories) he needs? I don't know how many calories Modulen or Fortimel have, but in my experience, 4 shakes plus 1 meal is typically not enough calories for a teenage boy. We were told to aim for 2000 calories to gain weight, and actually found that my daughter (who is very petite) needed 2400 calories to gain weight! Kids with IBD tend to need more calories than kids without, and teenage boys in general need a LOT of calories. I'm a little worried he isn't getting enough - usually it's about 250 calories per shake, so that would put him at 1000 calories from formula and then one meal.

I've just been sent the answers for regular blood tests, everything is normal except of course of CRP - now is 30.9 from 40 - and sed rate - now is 55 from 80

His inflammatory markers are still high, as said above, but we know he is flaring. And most importantly, they are heading in the right direction - they're both going down. That's good news! Over time, they should get better and better.

 

[elenak]

Are you working with your GI or a dietician to guide you on how many shakes (and calories) he needs? I don't know how many calories Modulen or Fortimel have, but in my experience, 4 shakes plus 1 meal is typically not enough calories for a teenage boy. We were told to aim for 2000 calories to gain weight, and actually found that my daughter (who is very petite) needed 2400 calories to gain weight! Kids with IBD tend to need more calories than kids without, and teenage boys in general need a LOT of calories. I'm a little worried he isn't getting enough - usually it's about 250 calories per shake, so that would put him at 1000 calories from formula and then one meal.

Of course he doesn't receive the necessary calories at this time, I know it, but it is so difficult to press him for more food or shakes. Today he didn't even has his solid meal, he ate almost nothing. The weather is so hot, today the temperature was 38°C , nobody wants to eat.
Each Modulen has 250 calories and each Fortimel 300, tried to make him drink Modulen with 375 calories (less water, more product, according to the instructions) but he couldn't drink it. He lost 600gr more in the last week. The only good thing is he isn't spending a lot of calories daily, it's the June's exams period at school so he is at home studying.

 

[crohnsinct]

I say this not to panic you but lack of nutrition also adds to the inflammatory cascade. He needs to be well nourished so his body can try to heal. If he is malnourished his body will drop the healing function in order to concentrate on daily operations. It is a vicious circle. Disease makes ou not want to eat so the body can't heal so inflammation goes up which makes you feel worse and so on. If there is anything you could do to get more calories into him it would certainly help the drugs work a little better. Our GI and dietician didn't care what my daughter was eating at one point as long as she ate.

Hugs! I know it is so hard to watch.

 

[my little penguin]

One thing is treat the shakes like meds
He can eat what he wants in solid food
But has to get x numbers of shakes in to make up any calories
We did this with Ds more than once
Shakes are medical food
All shakes 8 per day woth no solid foods would be een
That works similar to oral steriods healing things
Only less side effects
We bribed Ds
Being sickly by not eating enough wasn’t helping him at all

2 shakes at breakfast
1 as a snack
2 for lunch
1 as a snack
2 for dinner
He could pick the snack time but all 8 by bed
Good luck

 

[elenak]

You are both so right, I'm starting this schedule today! Didn't even crossed my mind all that @crohnsinct said, that being malnourished would affect the inflammatory that way! Thank you so much, you are treasure!

 

[Maya142]

Yes, our GI gave our daughter a choice - feeding tube or drinking the shakes. Not having them was not an option. She had become severely underweight and was actually hospitalized 3 times due to her very low weight and electrolyte abnormalities which affected her heart. I hadn’t realized how serious severe malnourishment could be.

 

[elenak]

Guys, I have new problem. I have rheumatoid arthritis, I'm taking methotrexate for the last 4 years and I'm going to move to Humira. I've just received my blood results and I am positive to quantiferon!!!
When V had the similar exam, the result was "indeterminate", he did TB-spot (which was negative) before the start of the medication (azathioprine at first). Do you think that there is high possibility for him to be positive too??? How reliable TB-spot exam is?

 

[my little penguin]

It just means latent Tb
Most folks have latent tb and never know it
If you take biologics it’s recommended you get tested yearly for latent tb
Then if positive they treat for 8-9 months with isoniazid or similar
After 8-12 weeks of treatment biologics can be started again
Just make sure he gets a quanitiferon blood test again
And that he hasn’t had a skin test for at least 6 weeks prior to the blood test
That can cause false positives

Let his pcp and Gi know asap
They may hold his biologics until he is tested

 

[Maya142]

Also, do know that if he had the BCG vaccine for TB, his skin test may be positive (a false positive). It sounds like he had a negative skin test, after the indeterminate blood test, so I'm guessing he didn't get the BCG vaccine. My daughter did, so she had a positive skin test but a negative quantiferon blood test, which is how we knew it was a false positive.

 

[elenak]

V doesn't have the BCG, in Greece this vaccine was given in groups in schools at the age of 6-7, but they stopped do it to Greeks when he was 5 because of the wave of refugees coming at that time (then it was decided that only the refugee children would do it). My daughter who is 3 years older than him has done it. It was the only vaccine (except Covid's vaccine) that was given this way. TB-spot that he did after quantiferon was indeterminate was blood test no skin test (MANTOU -the skin test-, he has done a lot in the past due to not having the BCG). I'm still waiting the answer of his doctor.....

Yesterday he managed to have 6 shakes and two meals, he managed to earn 2.460 calories!

 

[elenak]

He just had the quantiferon test, chest x-ray is scheduled for Monday. Cross fingers...

 

[my little penguin]

Hugs

 

[elenak]

Calpro = 295 (424 before). Yes, it's going to be tough but everything is going to be OK at the end...
I have so many issues lately that I think I'm going crazy... Thank you so much for your support... ❤❤❤

 

[my little penguin]

Ten plus years in
I can tell you
It will be ok
You may have bumps here or there
But the kids thrive despite crohns
And it does not define them
In the end of the day it will still just be normal teenage battles and poof your “baby” is off to college or working
The crazy settles for crohns and it takes a back burner to life

 

[elenak]

Ten plus years in
I can tell you
It will be ok
You may have bumps here or there
But the kids thrive despite crohns
And it does not define them
In the end of the day it will still just be normal teenage battles and poof your “baby” is off to college or working
The crazy settles for crohns and it takes a back burner to life

I bet you're right! Actually I count on that!

 

[elenak]

V's quantiferon negative, yeahhhhh!!!

 

[my little penguin]

woohoo!!!!!

 

[crohnsinct]

Phew! One less thing to worry about!

 

[elenak]

Hello to everybody! I'm here to update...::
V's inflammation's indicators are still high, 32 Crp and 53 sed rate after 2 months on hyrimoz (1 injection per 2 weeks).
Yesterday he had endoscopy and we are all shocked: no stenosis, no inflammation, no scars!!! Everything normal, terminal ileum: normal, I CAN'T STOP READ THIS! The only thing mentioned is "mild sigmoid swelling. Biopsies are pending". In 10 days he is going to have MRI enterography to compare it with the last he did 1 year ago.
The drug's levels: 20,65 and antibodies: negative (1AU/ml) so we are continuing to this dosage, 1/15 days.
The doctor (which was shocked by the result too) said that we will wait for the biopsies, the MRI and if everything is ok but the inflammation' indicators are still high, we will start searching more...
What do you think of all this? I couldn't believe what I was hearing yesterday, I was ready for the worst!

 

[crohnsinct]

Awww. I am so happy for you!

CRP and ESR are just indicators of inflammation in the body but they are not specific to the digestive system. Did they do a fecal calprotectin test? This measures inflammation in the bowel and is a much more specific indicator for IBD.

I think your plan sounds very reasonable. Doing the MRI to look where the scope can’t reach and looking at biopsies. Although inflammation that only shows on biopsies does not usually raise CRP and ESR. Also FWIW - the AGA and NASPGHAN do not recommend changing drugs for inflammation that only shows on biopsies. You know the saying perfect is the enemy of good enough. They might monitor closer. They might change dosing of the current med but not change the med because the risk of losing a very good treatment is a lot higher than histologiinflammation.

Congrats on the clean scope and good luck with MRI.

 

[my little penguin]

Good news
Does he have any other symptoms outside the gut ?
Sore joints /muscles ?
Skin ?
Headaches ?
Just sometimes high crp is coming from somewhere
And kids with crohns tend to get extra tag along diseases

or it could be hiding in the small intestine and MRE might tell a different story

As far as inflammation on biopsies
And changing meds. Or dosing
Depends on the kiddo
Mine always had had “clean looking “ scopes but inflammation present on biopsies and MRE
So we have always made decisions based on theses findings /symptoms etc…
If we waited for his scopes to look bad he would have damage in his case

every kiddo is different

abd inflammation could be a number of things

we blamed a lot on crohns in the beginning
Turns out he had juvenile arthritis as well
Even then we went back to blaming crohns again when extra intestinal symptoms appeared later
In that case it was a rare auto inflammatory condition

once we got all three things treated properly things got back to normal

my point definitely look at MRE /biopsies
But if those are clean
Something might be happening behind the scenes that has nothing to do with crohns

hugs
Wonderful news

 

[elenak]

Dearest moms... Thank you so much for your wonderful words!
I've been in very dark places, I know you can understand me.
We visited one of the best GI for adults, he accepted us and he was very troubled about V's condition. We even talked about surgery, he said that Stelara would be the best option for the next step but here is the last step for children, we should go to Entyvio first, if we go straight to Stelara there is very high possibility his file to be rejected. That means more time wasted...
We haven't recent calpro, a month ago it was still high, almost 290. His clinical picture is confusing as well, he is stable on weight (doesn't lose or gain) but every second week (the one that didn't have the injection) he was complaining for bloating, bad mood, discomfort in belly. I was sure that the best scenario would be to adjust the dose per week and when I saw that the drug's level in two weeks was high I was sure that the scope would be awful.
We saw the inflammation on the previous scope, it was in terminal ileum and had caused so big stenosis that the scope couldn't go any further. He had some scars on the colon, but his major problem was in terminal ileum.

Penguin, he doesn't complain for anything else, I have rheumatoid arthritis and I watch him for this kind of symptoms. His skin and his mouth are clear so far, he was tested again yesterday by his doctor. We were all surprised yesterday by the result, it was really unexpectable. Doc said that maybe Hyrimoz has just started working and maybe in a month be able to see reduced crp and sed rate. Anyway, as you have said, nothing in Gi land is quick (I remember your words when I'm desperate - a lot in the previous days).

The only thing happening from March that all started is that then he started to lose his last deciduous teeth, those that he was supposed to replace at the age of 10-12. He had his first tooth when he was 15 months old, and he was always late in teeth procedure. His Gi doctor and his dentist said that this wouldn't justify the increased crp, I'm not that sure about it. He has only one more tooth to replace, I hope this will happen quickly, just to get it out of my head...

How difficult is the preparation for the colonoscopy for our kids! He was given the easier way this time, he had to drink only two glasses of laxative and 3lt of water in 10 hours, but he had to be without food almost 2 days, the first day he was allowed to eat only strained chicken broth and the second nothing, only the water. He woke up at 6 am and started to vomit, we get in the hospital by 08.30 and he was about to pass out. They put him in intravenous term and took him to surgery room when he felt a little bit better. Hopefully, all this sadness and stress disappeared with the good news... So happy that this is beyond us. MRE is not easy as well, but this will pass too...

 

[my little penguin]

So the difference here in prep for colonoscopy
Ducolax pills (laxative) and miralax (osmotic powder ) put in 64 oz of Gatorade (electrolyte solution with sugar )
Then after that clear liquids /popsicles that are clear -no red blue or purple dye
Sugar water keeps the belly happy so less likely to puke
Zofran also helps
That is day 1
Day 2 is scopes so nothing by mouth after midnight

the key us lots of clear sugar water to keep hydrated

spondyloarthritis is common with crohns and presents differently than rheumatoid arthritis
Very migratory
And not necessarily symmetrical
It’s weird

 

[elenak]

Tomorrow is the MRI day, cross fingers...

 

[my little penguin]

good luck

 

[elenak]

The MRI results (translated by google translate, I hope this makes sense to you):
"Mild thickening and contrast enhancement of the wall of the terminal ileum and the ileocecal valve,
milder grade in terms of comparative examination dated 7/5/2021. It gives the impression of staying in the area
reduction of the width of the lumen of the terminal ileum by approximately 4.5 cm, without
a significant degree of prostenotic dilatation is observed."
I haven't spoke with the doctor yet, but it's better than the previous one.
The good news are that the last two weeks he doesn't complain, he is hungry all the time and the last week he gained 600gr.

 

[crohnsinct]

Great news that there isn't stenosis or dilation! Also encouraging that things look better. Seems it is confirming what was found on scopes! YAY!

 

[elenak]

Good evening/day to everyone! I hope that you and your families are well.

Updating: Biopsies aren't ready yet (August is a dead month in Greece, everything is under functioning, everybody is on vacations). He had his blood work last week, CRP 8.9 and sed rate 29 (32 and 53 at 21/07). His doctor said that these are still elevated but improved so he will repeat them in 3 months when she is going to see him again. His clinical picture is good, he's gained 4 kilos the last two months, he isn't complaining for pains or bothers. This week he will have the second dose of Gardasil, hope it'll go OK.

Seems like the drug is working now finally. I hope that's all, and he'll keeping this way.

Thank you all for your support, you are precious.

 

[Pangolin]

That CRP and sed rate is still very concerning.

 

[elenak]

That CRP and sed rate is still very concerning.

I know. I'm not so happy about this but still, are the best results we have in a long time. The only thing sure is that his intestine is in the best condition ever for now. He has been through a lot lately, he took this 3months gap with a lot of smiles, I am not settled at all but I think I'll try to look calm and if his clinical picture remains as good as now I'll let him for the next period...

 

[Jo-mom]

I think it's great that he has gained weight and things are slowly improving.

 

[Maya142]

I’m glad things are going in the right direction. My daughter took quite a while to really respond to Humira (we had to move to weekly doses and add MTX before she really responded) and I’m hoping he’s just a slow responder too and his CRP and ESR will go down soon. It is great to hear he’s gaining weight and that his MRE and scopes looked better!

 

[crohnsinct]

Maybe his CRP and Sed rate aren't quite in range but they are vastly improved. That along with his clinical picture and the scope results are all encouraging. Also, keep in mind that other things could affect sed rate and CRP and they aren't just an indicator of IBD. FWIW, my daughter once had a ridiculously high CRP and we decided to watch. No signs of cold, injury or anything. The very next month is wayback down. I would sit tight and enjoy the positives for now.

 

[Maya142]

Yes, I agree - his CRP dropping from 32 to 8.9 is a big jump down! Same with ESR. My daughter has arthritis and her rheumatologist and GI tend not to be too concerned when her CRP is around 8, simply because her CRP is always high due her arthritis (which is not ideal, but in her case, we have never been able to totally control her arthritis). But when it jumps to 20 or 30, then her GI tends to do a fecal calprotectin to make sure it’s not her IBD and decides what to do based on that. So honestly, I would also be very encouraged by imaging that has improved and that he’s feeling better and is gaining weight.