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Posted 7/14/2009 4:34 PM (GMT 0)
My daughter is 11 and she is going to start her first Remicade treatment tomorrow.

I am nervous about this whole thing , I heard it can cause cancer and TB. But I feel like it is the only thing left for her we have tried everything else and she goes good for awhile and then falls back again. I just hate seeing her like this and there is nothing I can do for her.

She was diagnosed with Crohns back in May of 2008 and we have done the steroids , Rowasa, Pentasa, 6MP. My hands are tied and I just hope this works and I hope she sees something after her 1st treatment...

I guess I just need someone to talk to about this and did not know if anyone out there has any kind of words to say about this drug...

Thank you for listening

rolleyes  

Posted 7/14/2009 4:51 PM (GMT 0)
mydaughter, welcome to the forum.  You should be able to find tons of old posts on Remicade if you search or go to the Crohn's Disease Resources link.  But, I will tell you my experience.  I started Remicade when I was probably 25 and, at the time, it worked wonders.  Got me eating again, able to go back to work (was on FMLA for 12 weeks) and even put me in remission.  But, several months in, I started losing response to it and had to increase the frequency of the infusions.  Even then, it didn't work as well as it had previously.  Then, I started having allergic reactions to it and, despite premedicating and being admitted to the hospital for 19 hour long infusions, I stopped taking it.  Then I switched to Cimzia and now Humira and all have kept my Crohn's in remission (but are not taking care of the Crohn's related arthritis).  So, many people have had success on the drug and the only side effects I had prior to the allergic reactions were frequent upper respiratory infections, which I still get on Humira.  It just wasn't for me long term.   
Posted 7/14/2009 5:21 PM (GMT 0)
I've been on Remicade since June of 2008 and so far I haven't had any problems with it other than the ocassional upper resp infection. It's been the miracle drug for me! There have been reports of cancer and TB with this drug, but my research has found that the risk is really low. For me it is worth it risk or no risk, but I do understand your concern as your daughter is only 11. I started out getting one treatment, then the next was 2 weeks after that then the next was at 4 weeks and then 6 and 8 weeks and then every 8 weeks after that, I did see improvement right away, so people do not so don't give up.
Posted 7/14/2009 5:38 PM (GMT 0)

I have been on Remicade since last October, I still have the odd off day, but generally I am doing well on this drug. I have met others at the hospital who are also doing well.

It is an easy proceedure, painless, but I can imagine a bit scary for an 11 year old.  It might take more than one session however to feel the difference. 

I dont regret taking Remicade and will continue to do for as long as it helps me. As far as I aware there is no evidence that it increases the risk of cancer, but I understand your anxieties about giving such a big drug to a young child. I generally find my infusion time quite a peaceful one.

The first infusion normally takes 2 hours then your daughter will be monitored for 2 hours afterwards, after the 1st 3 sessions I only have to stay for 1 hours after. You can eat and drink as normal during and after the infusion.

I didnt have any major problems after the infusion, just a sinus headache and a bit tired.

My life has certainly improved and I am grateful for that

My best wishes to you and your daughter

Posted 7/14/2009 7:24 PM (GMT 0)
I have been on remicade for almost 11 months and have been feeling great.  I can tell you a little about my experience with the whole infusion process.  For me it's simply a piece of cake!  I've never once had a reaction, I never take any type of over-the-counter drugs before or after.  I'm usually there for 2-3 hours.  They don't make me stay after the infusion is over.  I can't even tell I've had anything done when I leave - I feel perfectly normal and go about the rest of my day (taking care of my 2 year old!).  Since I'm a mom of a toddler I actually enjoy the 2 hour break to myself where I can read, write, watch TV, text, sleep, snack, chat w/the infusion patients (who by the way, seem to all be over 60)....... like I said, for me it's a 'piece of cake'!  Hope your daughter finds it the same.  I'm sure it'll be harder for an 11 year old to 'enjoy' sitting down for a couple hours though.  Maybe you could give her a new (one-handed) hand held game to play?  Or maybe you could borrow a portable DVD player w/head phones. 

Posted 7/14/2009 8:53 PM (GMT 0)
Hello mydaughter, My name is Rebecca. I am 20 years old and when I was 12 I was diagnosed and, like your daughter, had been on every medicine possible and Remicade was my last resort aside from surgery. I was scared about starting it because of the cancer and the TB and having an allergic reaction. When I started the Remicade I was on ALOT of medicines including Prednisone, 6-mp, prilosec, Elavil, and many supplements because I couldnt gain weight. After starting the Remicade, about two or three months in, I got off the Prednisone(which I hated because of the way it made me look--I was in seventh grade and weighed 80lbs and had a HUGE face-it was horrifying), and then all the other medicines just fell away too. I was on JUST Remicade and in remission the entire time I was in highschool. I was symptom free. I called Remicade my miracle drug. Until recently I was doing great on the Remicade. I was on it for 8 years with no side effects, no cancer and certainly no TB(Thank God!!!)

I am switching to Humira soon because I just recently have started my second flare-up ever. I am hoping the Humira will work since the Remicade has stopped affecting me. I hope things go great for your daughter and I hope that Remicade will be her "miracle drug" too.

Lots of Hugs for your daughter!!!

Rebecca

Posted 7/15/2009 12:16 PM (GMT 0)
I have been on Remicade since January this year. It has done wonders for me too. For me it took 3 treatments to really notice a difference. But my Crohns is in really good shape. I bring my lap top and cruise around on the internet or watch movies on it during my treatments. It passes the time faster :)
Posted 7/16/2009 2:28 PM (GMT 0)
Hello-

My daughter had her first treatment yesterday and everything went well, it was a long day that is for sure the Doctor wanted it to go real slow since it was her first time with it. But she did pretty good  of course she was exhausted by the end of the day.... but I would like to Thank everyone for giving me some info on this and telling me about your experiences.... it makes me feel better.. I just second guess my decision for her but I do not know what else to do it seems like this is the best thing to do right now...

Rebecca I hope my daughter does have an experience like you did , it sounds like it did do great for you and I hope she gets the same thank you for your words it made me feel better about this.... you were so young also

Thank You Everyone

Posted 7/16/2009 7:29 PM (GMT 0)
Hi

I just had my second infusion yesterday.... So far I have been doing great! I did have a problem yesterday with them finding a vein... I think its because I didnt drink alot of water like I normally do. Last time was fine. No reaction, a little sleepy from the benadryl. Next day I felt great! Its good to feel normal again.
Posted 7/16/2009 8:51 PM (GMT 0)
I have been on Remicade for years. I love it. I talked to the dr. about the cancer risk. He said the drug compnaies have to list all side effects and such that could happen. But the risk is low.I pre medicate with Benadryl and Tylenol. so I get real sleepy. matter of fact, I always end up taking a nap during the infusion.I dont have to stay after the infusion. I get up and go home. The worst part for me is for them to find a vein.I am a hard stick. But there is one nurse that can always find it the first time.Remicade has been a life saver for me. Hope you all do well, also.

Julie

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