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Son starting remicade in a couple hours...

In April 2020 my 12 yo was diagnosed w/Crohns (he has been through testing and appointments since November '19), 3 days later his biopsy came back and they changed it to UC/undetermined. At the end of August he was hospitalized due to anemia and they did a pill cam test. They found ulcers all through the GI tract and on his Small Intestine. So, Crohns is the diagnosis again. They started him on Prednisone and Imuran with the hopes Imuran would work, would then introduce Entyvio shy away from Imuran and see if we could get away w/Entyvio on it's own due to minimal to no side effects and being gut specific. Unfortunately, 4 weeks into Imuran, his symptoms were worsening and his lipase was elevated. His body was not a fan of Imuran. So, here we are again in the hospital, he received another 2 units of blood and we will jumping on the Remicade train. Of course back in Apri when this medication was discussed, it was very overwhelming and scary. Our first reaction was heck no. After him battling this for 10 months now, researching and reading some messages in this forum, we actually feel way more comfy to make the jump and at this point it's hands up in the air, just do what you have to do to make him better. Yesterday he had a 102.2 temp, low BP, tacky/rapid pulse, low hemoglobin, elevated lipase, elevated white blood cells, low sodium, low potassium and honestly had never looked so bad. It was scary. He will also be taking methotrexate which also is a bit scary. Thank you to everyone that takes the time to post on forums like this it was very helpful for us and I'm sure others, it does make a difference. Also, I would love any type of feedback regarding experience with either drug.
 
Hi there, for my son, Remicade was a game changer. My son was older, 19, at the time. He's been on it for 2 years. He also has enteropathic arthritis so mobility was also an issue for him. I think most of us are afraid of the unknown and bioligics seem so scary when you first hear of them, but then you realize how effective they can be for many. In my son's case, it was remarkable - right after his first infusion, he was able to eat - he gained a much need 20 kilos and his mobility is great.

I hope it does well for your child. Not all stories are bad ones. :)
 
Thank you, Jo-Mom! So glad to hear it works for him! Love it! My son as well has mobility problems, his is due to joint swelling. His joint swelling would migrate all over body, it was insane. Luckily, he is 4 weeks free of joint swelling probably thanks to the Prednisone but hey, we will take it. Getting close to go time over here. Meds should be ready and delivered shortly. Of course to be on the safe side they will be giving Tylenol and 15 minutes later Benadryl and last but not least Remicade. 🤞🤞🤞
 
I'm a fan of starting like this:

Evaluate with colonoscopy and MRI for mucosal inflammation and bowel wall thickness, respectively
Check inflammatory markers eg ESR, CRP, fecal calprotectin
Start EEN (semi-elemental is likely to work better than polymeric, but if the intestines are in too bad a state then start with TPN instead)
Start antibiotics (various options)
If inflammation doesn't improve after several days, consider biologics, anti-inflammatories, and surgery
If inflammation is down, keep going with EEN + antibiotics and reevaluate in 2-4 months.
If things aren't moving toward mucosal healing and bowel wall thickness normalization, consider biologics, surgery, etc.

Feedback is important, and note that ESR/CRP/FCP become less indicative of underlying disease when on an inflammation-reducing drug such as a biologic. Always keep the goals of mucosal healing and wall thickness normalization in mind.

Edit: I think biologics should be treated with a little more care than they often are, and overall my son didn't have a good experience with them (remicade or entyvio). Entyvio did have fewer side effects at least.

Edit2: Regarding your son, right now with that fever, I have to think that antibiotics would be more appropriate than immune suppressants and steroids at this point.
 
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Honestly I think that with a 102 degree fever, tachycardia, and high white blood cells, they probably need to be treating sepsis first and foremost. I am not a sepsis expert, but this all sounds dangerous and I would not expect steroids, methotrexate, and remicade to be good for sepsis--in fact, I would generally expect them to make the situation worse.
 

my little penguin

Moderator
Staff member
The first step for remicade or any biologic is hard as a parent
But I can say for my kiddo
I didn’t realize how sick he was till to got to see how well he got after remicade infusions
Even his swim coaches at the time wanted to know what was different
They were amazed
For ds although biolgics were scary
The effect was priceless
It gave my kiddo back
He did have an allergic reaction to remicade after 8 months but the reaction was mild and my kiddo has many allergies to food and drugs so not in expected
He started remicade at age 8
And like you it was just hard
Now at almost 17 and two biologics later (he is on Stelara)
No side effects
Growing like a champ
Healthy pink intestine on scopes
Never regretted biologics

inflammation can cause fevers as well as infection so let his Gi know
Hugs
Hope it went well today
Each infusion gets easier
And the results are amazing
 

my little penguin

Moderator
Staff member
Oh and Ds has arthritis as well so methotrexate for that since age 10 plus biologics
The combo fixes both his joints and his crohns
 
Honestly I think that with a 102 degree fever, tachycardia, and high white blood cells, they probably need to be treating sepsis first and foremost. I am not a sepsis expert, but this all sounds dangerous and I would not expect steroids, methotrexate, and remicade to be good for sepsis--in fact, I would generally expect them to make the situation worse.
Yes, I should have included that, they do have him on Zosyn until culture comes back to show if septic or not. Since he showed tremendous improvement after blood transfusion and fluids, they feel sepsis is not a concern but are continuing the biotic until results come back.
 
How did the infusion go? I hope you see positive results soon. Hugs.
It went well, they increased speed of infusion every 15 minutes and during the last 15 he started feeling tingly sensations in his upper lip and knees. Come to find out it's a rare side effect, is neurological and we kept watch to make sure there was no blurriness in eye sight and luckily there were not any. the upper lip tingles subsided rather quickly, the knees took about 30 minutes. Not a game stopper, doc will dial back on the speed accordingly and adjust as needed. So, we are so happy that there were no game stoppers and hope this does the trick for him. After bloodwork this morning, all labs are heading in the right direction, except blood, it dropped a little since yesterday, 10.8 down to 9.6.
 
The first step for remicade or any biologic is hard as a parent
But I can say for my kiddo
I didn’t realize how sick he was till to got to see how well he got after remicade infusions
Even his swim coaches at the time wanted to know what was different
They were amazed
For ds although biolgics were scary
The effect was priceless
It gave my kiddo back
He did have an allergic reaction to remicade after 8 months but the reaction was mild and my kiddo has many allergies to food and drugs so not in expected
He started remicade at age 8
And like you it was just hard
Now at almost 17 and two biologics later (he is on Stelara)
No side effects
Growing like a champ
Healthy pink intestine on scopes
Never regretted biologics

inflammation can cause fevers as well as infection so let his Gi know
Hugs
Hope it went well today
Each infusion gets easier
And the results are amazing
Thank you so much for sharing! Keeps our hopes strong and going. So glad to hear your son is doing so well after 9 years. My son is quarterback and a dang good one. Hasn't even had the urge to throw a football in months and gets him down sometimes. this just brings tears to my eyes to know that your son got in that pool with such noticeable improvement. I can't wait to watch my boy throw a football again.
We were all high fives and tears here yesterday when he had minimal side effects and the doc was pleased and confirmed we will proceed w/this treatment.
 

my little penguin

Moderator
Staff member
It’s does often take months to work so don’t get discouraged
Additionally Ds reaction to remicade after 8 months was a tongue that tingled for days - mri of brain was clear so they switch him to humira at that point

so even if worst case scenario he can’t take the meds any more
There are other biolgics
Hope side effects stay minimal and he starts to feel better
 

crohnsinct

Well-known member
Hi there! Sorry I am just seeing this now but wanted to welcome you to the IV League!

I wanted to comment the procedure with an acute severe flare, which your boy is in and it is similar to my older daughter's experience. While it is true that antibiotic treatment is getting a lot of attention these days for IBD, they will not generally take the time to try antibiotic therapy with someone who is hospitalized in an acute severe flare. Time is of the essence and they are going to go with what they know has the best chance at success and that is certainly Remicade. I am glad the infusion was a success. I have two daughters who were/are on Remicade for a combined totally of 15 years of use and I dare say not one issue at all. Neither of them got increased infections, even when sharing beds with other kids who got mono or flu! Our girls are the healthiest in the house. They both responded beautifully to the drug and having that peace of mind between infusions when you don't have to think about Crohn's is great. About 4 years in it did stop working for one of my daughters. We tried all the iterations of dose increases, interval shortening, adding this or that but eventually had to give it up. But my other daughter is in year 6 and going strong!

I also wanted to comment on his HGB dropping a bit. I am assuming with a severe flare requiring transfusion and those electrolytes being all off he was given IV fluids. When you are dehydrated H&H will be artificially increased due to lower blood volume. All the fluids and blood he got will increase blood volume and therefore decrease H&H a little. So it isn't that he is actually losing blood or hemoglobin is going down as much as a result of proper blood volume. You should see that number start to level off and hopefully improve.
 
Welcome to the Remicade club, hope it works wonders for him. My son started on it at 14 1/2 after trying many unsuccessful treatments for 4 years. He is 21 now and still doing well. Remicade gave him his quality of life back.
 
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