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Posted 1/19/2011 2:08 PM (GMT 0)
My boy had his first loading dose yesterday. I took the day off work and hung out at the hospital.(wife couldn't ) the whole thing took 4hrs 15 mins. better than we expected. no reaction so far. questions... how long until we know if it's working? If he has had no pain, no D, how do we know if it's working?
Posted 1/19/2011 2:10 PM (GMT 0)
My brother doesn't have any symptoms but after he takes Remicade he notices a change in his energy, so he thats one way he knows it is working.
Best of luck to your son, and happy to hear it went well!
Posted 1/19/2011 3:43 PM (GMT 0)
i;ve just had my second dose and have felt no different yet...
Posted 1/19/2011 3:50 PM (GMT 0)
C Bob, I started to feel better after the second infusion but it varies with each individual . Hope it helps soon...
Posted 1/19/2011 4:50 PM (GMT 0)
I also had my first infusion last week, and don't have pain or D or any other symptoms. I had a resection in July so this is maintenance med to hopefully prevent future blockages/strictures. I guess I won't know if it's working until my next colonoscopy when we can see what's actually happening inside.

Good luck to you & your son, I hope it's a success.

Posted 1/19/2011 6:14 PM (GMT 0)
My daughter had her first infusion on 12/28.  I could see it was making an amazing difference within the first week afterwards.  More energy, better mood, NO stomach pains, huge increase in appetite.  Two weeks later, her bloodwork was so much better (CRP was with normal range of 0-5, hers being a 1!) and she had gained 4 lbs.  (Prior to now it would take her weeks and weeks to gain a single pound.)  Second infusion was 1/12.  All went well...took about 4 hours as you mentioned.  She is looking, acting, feeling better than I've seen her in two years.  You'd never know she had Crohn's at this point. No symptoms at all.  Keeping our fingers crossed that this continues.  Hope your son has the same positive results.
Posted 1/20/2011 5:25 PM (GMT 0)
two days later, and no sign of adverse effects. Can't even see the infusion site. He is excited, his weight is up half a pound from tuesday. I don't want to tell him that it could be nothing. I'll let him enjoy the moment.
Posted 1/20/2011 6:09 PM (GMT 0)
yea hoo!!!! I am not feeling to bad today...had a bad headache yesterday. not sure if that was from the remi or not..\I hope your son stays well and happy!!!
Posted 1/20/2011 6:40 PM (GMT 0)
For my husband he saw a marked difference after his second infusion. After the first one, he thought he felt better, but after the second one he was sure he felt better, and it also showed an improvement in the stool quality - from diarrhea, he was starting to have more formed stool.

Remicade has kept my husband stable now for about 3 years, and I'm hoping will last him a lot longer. I hope Remicade helps your son a lot, with no adverse effects. My hubby has a flu like reaction to remicade, where he gets fever, body and joint aches and pains for about 2 days following an infusion. After pre-medication with benedryl and solumedrol, those reactions are much less, and he just takes tylenol for any residual pain or fever. Feeling a little crummy 2 days out of every 8 weeks is a pretty good deal.

PV
Posted 1/20/2011 7:02 PM (GMT 0)

PV said...
For my husband he saw a marked difference after his second infusion. After the first one, he thought he felt better, but after the second one he was sure he felt better, and it also showed an improvement in the stool quality - from diarrhea, he was starting to have more formed stool.

Remicade has kept my husband stable now for about 3 years, and I'm hoping will last him a lot longer. I hope Remicade helps your son a lot, with no adverse effects. My hubby has a flu like reaction to remicade, where he gets fever, body and joint aches and pains for about 2 days following an infusion. After pre-medication with benedryl and solumedrol, those reactions are much less, and he just takes tylenol for any residual pain or fever. Feeling a little crummy 2 days out of every 8 weeks is a pretty good deal.

PV

They gave my boy benedryl and tylenol pre infusion. my problem with measuring success, is that my boy doesn't really have symptoms. no D, no pain, no blood. rank gas on occasion, but that's it other than being smaller than other guys his age.
Posted 1/20/2011 7:50 PM (GMT 0)
My experience thus far is it took between the 3rd and 4th to start getting relief.  I am hopeful that my GI follow up in a couple weeks will get me to start reducing my daily pills.  Having some fatigue issues here and there.  My 4th infusion was on the 11th and made me really tired for a couple days.

My guess is your son showed something that said he has got CD with lack of repsonse to the other drugs to warrant the Remi.  How did he get DX with no symptoms?

If he shows no reactions maybe he will no need the benedryl for further doses.  My clinic doesn't even give it unless you have shown a reaction.

Posted 1/20/2011 9:03 PM (GMT 0)
thanks for the input folks. Just for info, got his numbers back.
CRP 55.7 up from 46 when he was on the LDN
ESR 45 up from 38
Hemo
95 down from 99.
I feel like like LDN was working, but I don't know
Posted 1/21/2011 2:20 AM (GMT 0)
I found improvement also between the third and fourth dose if I recall right. I don't understand the numbers that you post Bob but I imagine that those would be a way to gauge progress. Not to mention his weight and energy.

Does he take Vitamin D? Since we are supposed to be more prone to illness on this med it could be a good idea. I don't know what dose to suggest for a young guy. I take 1000 in the AM and 1000 in the PM. Can you consult an expert for his weight and age? I am COMPLETELY convinced that the vita D is why I rarely get colds and sore throats anymore. It would take EXTREMELY strong evidence to give me doubt on this one. Can't tell you how lucky that boy is to have you as an advocate........
Posted 1/21/2011 3:49 PM (GMT 0)
The numbers are his inflammatory markers and his blood levels. CRP is C reactive protien and I don't know what esr stands for, but they are both too high. His hemoglobin should be around 120 so it is low.
Posted 1/21/2011 3:51 PM (GMT 0)
Bob, I'm hopeful that this new med will bring quick relief. I know you are worried about your boy. {{{HUGS}}}}
Posted 1/24/2011 3:46 PM (GMT 0)
He's back up to 68 lbs. and very happy about it. He came to me last night and said "It's working!" God I hope so. 2nd loading dose next monday, then they will do his blood again before the 3rd one at the end of Feb.
Posted 1/24/2011 7:20 PM (GMT 0)
Hi, My 16 daughter had her second infusion around 3 weeks ago with no symptoms unfortunatley things have moved on since then and she has just had a resection operation. (nothing to do with infusion) things had just progressed. She did say though that like a few others have said she certainly had more energy after the second dose. She is due her 3rd on 1/2/11 and hopefully now the infected part has gone she should feel better still. Good look to your son and love to you x
Posted 1/24/2011 9:16 PM (GMT 0)
Hey Comedy, I just wanted to touch on something and I know Nanners touched on it somewhere else.  All provisios apply, everything could be different for everyone, buuuuuuuuttttt.....

Even though I am showing progress, I just realized late last week that there are some things I may never get to eat again, at least not without problems.  I believe Nanners said something similar about her remission and certain foods still give her trouble.  My only thought here is to help your son proceed with caution as he feels better.  I know there are days I am ravenous and will eat more than usual and man, do I pay for it.  But it is great that he feels so positive and is doing well.  I only bring all this up because I felt pretty crushed Friday due to a very bad night on the toilet and would want to help your son avoid the same feeling.

Posted 1/25/2011 1:24 AM (GMT 0)
I have been on Remecade 2 years in May. I noticed a tremendous difference after second infusion. I go every 7 weeks now and always about 4 or 5 days before infusion I can feel a flare up starting. After my infusion within a few hours I feel like a new person. Plenty of energy, can eat salads, etc. I do have Inflamatory Arthritis now and that does hurt, but the Remecade again helps there. I am on pain meds for artritis between infusions. I guess what I am saying is I have heard bad and good about Remecade. I think it is the individual person as to how you will re-act. A good chin-up helps also, I truely beleive if you beleive it will make it easier, not always, but a lot. I am now having some other problems, but totally different. I wish everyone that use's Remecade is in remission with the first infusion. I hope you have good success and may your life be filled with all good things. May this desease never come back to hurt you or haunt you.
Posted 1/25/2011 4:40 PM (GMT 0)
mdf34...you are so right! I am on remicade and have been on it for over 6 years! I do believe I am in remission, but I do still have a bad day every now and then. So don't be alarmed if that happens with your son. Just have him take it easy, rest, and eat soft foods. So glad he thinks it is working!!!
Posted 1/26/2011 3:14 AM (GMT 0)
8 or 9 years on Remicade. I felt better by the 2nd infusion. Usually they wait until after there are three loading doses before they even consider if it's working or not. Some people take more, some less.

His C Reactive Protein is high, but not out of the ordinary for active Crohn's. At least not for me. Usually they seem to like it below 5, or consider below 5 to be "normal".

They sometimes like Remicade patients to get regular blood tests. This allows them to see if it is working, and to watch for any issues regarding the dosage and side affects. I think your son's GI will look at the blood tests and be able to tell if it's doing it's thing.

But, if your son thinks it's working, than he is probably right. I say go with it, and enjoy it. Remicade gave me many, many years of symptom free living. I'd occasionally had an issue here or there, but for the most part, it worked great. I hope it works well for your son. So hard to hear about the younger kids having to deal with this stupid disease.
Posted 2/1/2011 1:59 PM (GMT 0)
Second loading dose last night. he's gained four pounds since the first one. it went well, but he was pretty tired out by the end. don't know if it's the Benedryl or the remicaide or the hospital supper. Just a clarification for those curious about cost. Hre in Alberta, Remicaide is free for under 18's. after that, it's up to my health plan at work
Posted 2/1/2011 2:38 PM (GMT 0)
Hey Bob, I do not use Remicade, but I have heard folks talk about being a little tired after their infusions. Generally only lasts a day or two, and then they are fine. Could be the Benedryl too, that makes me sleepy. Hugs!
Posted 2/2/2011 9:10 AM (GMT 0)
I was on prednisone for a month and had to stop for 3 weeks before my doctor would let me on remicade, so I was still doing ok. But instead of the effects from the prednisone wearing off in a couple weeks I never got sick again. My first 2 infusions were 2 weeks apart and then once every 8 weeks after that. After each time I just felt really cold with a scratchy throat and very tired like I had stayed up all night. But I just would go home and sleep and I was fine the next day. I hope it works for your son because it has done wonders for me. I thought I would never have a normal life without steroids since none of the other medications I tried had worked. Now It's like I was never sick to begin with. I went from 87lbs to the 150lbs I was before it all started cuz I can eat whatever I want, and 2 years later my hair grew back shiny and healthy like before and I feel like a regular 24 year old woman (who now has to lose some weight lol)

Post Edited (GinjaBaby) : 2/2/2011 2:22:38 AM (GMT-7)

Posted 2/2/2011 11:46 AM (GMT 0)
Now that I'm fully loaded I am pretty tired a couple days.  But bear in mind by the time I get home from my infusion after work, I have had a 20 hour day.  But this last time I was pretty worthless the next day after as well.
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