Does the tightness in throat mean you can't get Remicade?

Brian'sMom · Jan 21, 2011

My son had that tightness in his throat during his 3rd induction infusion today. They gave him benedryl and it cleared him up pretty quickly. After a bit he had a fever so they decided to stop and try again next week. He's been fever free since...so I think it was related to his reaction. He had the reaction after the nurse turned up the rate. He was doing fine for the first 30 min at a slow rate. Doc said if he's given it at a slower rate he'll be fine. Does anyone know much about this? If he had a reaction (no rash) will he be able to take it again, but over more hours successfully? Infusion nurses acted like this happens more with children and then they just slow it down to fix the issue.

Lydia · Jan 22, 2011

No it doesnt mean that necessarily. They may just try different premeds, and do the drip really really slowly next time around. Dont they give him benedryl prior to the infusion? I take an antihistamine (claratin because benedryl makes me sleepy), and I get solu-cortef, which is a steroid like pred prior to the infusion.

Guest9283 · Jan 22, 2011

Lydia said:
No it doesnt mean that necessarily. They may just try different premeds, and do the drip really really slowly next time around. Dont they give him benedryl prior to the infusion? I take an antihistamine (claratin because benedryl makes me sleepy), and I get solu-cortef, which is a steroid like pred prior to the infusion.

Good advice. For 11 years(or was it 9..i cant remember) I always used claritin, and non sleepy tylanol. The main thing the want to do is slow that drip down as mentioned. Make sure they are doing a whole 3 hours, and not trying to cram as many infusions in their book by rushing you. I went to one place in ATL that pushed me through in 1 hour. I changed docs right after that.

Brian'sMom · Jan 22, 2011

Ziggy, he'll be 11 in Feb. Ya, he takes 25mg by mouth of benedryl 30 min before they start the infusion. (He gets sooo sleepy and then he acts kinda depressed). This was only our 3rd infusion...I didn't realize til we had the problem that the nurse was continuing to turn it up. Next time I'm going to be very forceful in that we go slow. I hope he doesn't have that reaction again...do you think he will? He hasn't had a fever yet. I kept him home from school last week so he'd be fully healthy before his infusion, now he'll go back to school and retry sometime next week. I pray he doesn't catch anything. As an overprotective mother, I practically have put him in a 'bubble'. Its kinda making my son nuts. He needs to be around his friends. He hasn't seen anybody since before Christmas. (Well, part of that time we were fighting strep throat, and then an abscess on his rectum.) He felt great all last week. Now we need to put on the pounds while he's feeling well. Ziggy, when you were a kid did you stay clear of 'snack' foods to help put on weight? The world of food is so processed...we're letting him snack inbetween meals with cereal, granola bars, pretzel sticks, cheese, crackers...etc. what are your thoughts on that?

Guest9283 · Jan 22, 2011

Brian'sMom said:
Ziggy, he'll be 11 in Feb. Ya, he takes 25mg by mouth of benedryl 30 min before they start the infusion. (He gets sooo sleepy and then he acts kinda depressed). This was only our 3rd infusion...I didn't realize til we had the problem that the nurse was continuing to turn it up. Next time I'm going to be very forceful in that we go slow. I hope he doesn't have that reaction again...do you think he will? He hasn't had a fever yet. I kept him home from school last week so he'd be fully healthy before his infusion, now he'll go back to school and retry sometime next week. I pray he doesn't catch anything. As an overprotective mother, I practically have put him in a 'bubble'. Its kinda making my son nuts. He needs to be around his friends. He hasn't seen anybody since before Christmas. (Well, part of that time we were fighting strep throat, and then an abscess on his rectum.) He felt great all last week. Now we need to put on the pounds while he's feeling well. Ziggy, when you were a kid did you stay clear of 'snack' foods to help put on weight? The world of food is so processed...we're letting him snack inbetween meals with cereal, granola bars, pretzel sticks, cheese, crackers...etc. what are your thoughts on that?

I can only guess, but in my opinion from what you had mentioned, and my experiance - I would say he should be fine next time. Provided they run it at a mild rate. How long did he take to infuse? Do you know how many mg/lb of bodyweight he is taking of the remicade? In my experiance he should do fine if things are done right, and over time you'll losen up. My mother was just the same. I ended up not restricting myself at all, I just made sure I always had good sanitary habits. Washing hand after playing with other kids and such.

I have 1 secret to weight gain that i tell everyone. It is that peptamen 1.5. It is the only nutrition can that is approved through the FDA I believe. Being elemental, you will always absorb more of the calories in these cans vs stuff like enure and boost. The ingredient are also way better. The only problem for most people is that insurance only covers it if you have a feeding tube. I've never quit drinking them. When I am well, I substitute cans for 40% of my cals. When I am flaring I go 100% peptamen. It has been just as effective as prednisone for me, just like it mentions in some liquid elemental reseach litriture somewhere around here. You have to find a balance between eating comfortably and eating wise for long term success. I have also always stayed away from process food, because dieting just came really really easy ever since my 4 months of NPO when I was a kid. Howver, I believe that is the reason I never had surgery for 13 years. Not until the doc perforated me on accident. That perforation is what brought on the flare that led to my transplant.

Guest9283 · Jan 22, 2011

Oh make sure if you ever get the cans to drink that you order them in vanilla! Haha, you don't want your son to experiance the unflavoured cans! lol

Brian'sMom · Jan 22, 2011

Thanks Ziggy. I'll look into the peptamen. Also, I think its 5mg per/lb of the Remicade. Also on 2nd infusion it was supposed to take 3 hrs...but we were surprised that we were done in 2 1/2. This infusion he only got 14 cc's and trouble happened. He was doing good for about 20 min and she said she had turned up to 64 something. (She was talking to the doctor she paged). He said she should've stayed 45 or below. Not sure what those numbers mean. He also told her that no one has any problems if they just run it over 4 hours.

Brian'sMom · Jan 23, 2011

Does any of you veteran Remicade users know how strict the Induction period needs to be? Its week 0, week 2, then week 6... then every 6-8 after that. If my son has to miss getting it next week...making it 5 weeks from his last infusion instead of 4 weeks, will that make a big difference...with it being his 'induction period' doses?

Brian'sMom · Jan 26, 2011

We tried remicade yesterday and my son had that tightness in his throat again. Our GI doc is going to move to Humira.
I'd be interested in what you guys think. I think the tnf blocker was helping him a little, but then this allergy thing. It was on his third induction phase dose. On the fourth try they slowed it down a lot, and he had the reaction in 15 min.

Ziggy, I know you've had crohns when you were young...I'm having trouble as a mom. I'm feeling more panic. I'm feeling like this is going to be life from here on out...is it? This is my only link to others with crohns...but most here are adults dealing with it. Do children have a harder time...will my son get to a long remission with humira? Once a reaction, will he have no drugs that will help him. I wish I could see into the future, the unknown is panic. Also, I'm feeling like anything I feed him is going to send him backwards? He's been sooooo hungry and you can see every rib he has! Healthy food is not high in calories...what do I do? Also, the peptamen, won't it taste bad just like pedia sure? He can't drink that...I tried it and I can't drink the boost or pedia sure either.

Guest9283 · Jan 26, 2011

Brian'sMom said:
We tried remicade yesterday and my son had that tightness in his throat again. Our GI doc is going to move to Humira.
I'd be interested in what you guys think. I think the tnf blocker was helping him a little, but then this allergy thing. It was on his third induction phase dose. On the fourth try they slowed it down a lot, and he had the reaction in 15 min.

Ziggy, I know you've had crohns when you were young...I'm having trouble as a mom. I'm feeling more panic. I'm feeling like this is going to be life from here on out...is it? This is my only link to others with crohns...but most here are adults dealing with it. Do children have a harder time...will my son get to a long remission with humira? Once a reaction, will he have no drugs that will help him. I wish I could see into the future, the unknown is panic. Also, I'm feeling like anything I feed him is going to send him backwards? He's been sooooo hungry and you can see every rib he has! Healthy food is not high in calories...what do I do? Also, the peptamen, won't it taste bad just like pedia sure? He can't drink that...I tried it and I can't drink the boost or pedia sure either.

I am going to send you my mothers number. I think you should give her a call. She would be able to relate and comfort you in what you are going through. Just remember, Ive had many of these times that you are having, and felt the same way. During those times I would almost always feel like it would never get better. It always did after time. I know thats not toooo comforting to you right now. Give my mother a call, she would want you to call her if you are feeling this way, so don't feel shy.