Community Forum

Anyone out there have any positive Remicade stories?  My 11 year old daughter is currently on Imuran and the SCD diet - 3 months into it and she is having another flare   I've gotten her Prednisone (again) and I'm praying we can get thru this and get back on track.  If she flares again, Remicade looks imminent.  I'm scared of it (needless to say), does anyone have any positive results out there?  Thanks

 Reply posted for antonyde.

Thank you for the reply.  Everything is so tentative and unpredictable (as you know).  I hate not having solid control and no solid answers.  Hopefully science will assist!  Take care!

 Reply posted for sraymom.

I'm so sorry to hear your family is going through this

I'm 35 but have Crohn's since I was 15.  I have been on just about all the meds around and while Remicade worked, it worked very well and I had no side effects at all.

Needless to say it stopped working for me but again while it worked it worked better than probably any other meds I have tried in my many years.

Best of Luck

 Reply posted for AZMOM.

Hi Claire's Mom!  My daughter is doing good now, thanks for asking :~)  She rides a rollercoaster it seems like.  We have not had to go to Remicade and hopefully won't.  But her doctor is whom I trust and if he says we need to, then we will.  As you know, when we are dealing with young children, we don't have time to try new things over the course of many weeks, to see if they will work and then try this, try that, etc.etc.etc.  It sux to put them on heavy drugs but what the heck are we supposed to do right?  The SCD diet did not work for her.  She gained no weight at all and was not feeling well.  We took her off of it, put her on Rifaximin (among other things), she started eating everything in sight and has put on 3 pounds in two weeks!  How is Claire doing?

 Reply posted for fewmccullough.

Thank you for the reply!  That's a lot of the fear too, the drug not working anymore and switching and hoping.  Once we reach that ceiling, then what?  You know, everything is so uncertain - we always think, why can't we just find an answer and move on...  She did so well for 3 years on Colazal and then bang!  Well now we are hoping and praying she stays well.  Take care

 Reply posted for Jenn D H.

Thank you Jenn D H!  I like hearing positive stories!!  Thanks so much for the reply.  Are you still off maintenance drugs? 

 Reply posted for cougarmom.

Hi cougarmom, sorry for the delayed reply, haven't been logged on in quite a while!  My girl has been up and down but up right now (she is currently on Rifaximin, S.Boulardii, Culturelle, fish oil, Imuran and Nexium.  She feel good lately so we are keeping our fingers crossed.  We are going to see how her labs are and see how this month goes before deciding about Remicade (perish the thought).  I understand a lot of kids do well with it.  It is really lame that it can stop working.  I guess people start a different biologic (Humira is one right?)  I think it is.  I hope things don't worse for your son.  This disease is so hard to deal with, for everyone.   

 Reply posted for alanschachter.

That is the statement that was in the abstract, but in the discussion they concluded that there was no overall greater risk of cancer, as I previously listed.

 Reply posted for sraymom.

Back to your daughter, how are things going?

Claire's Mom

 Reply posted for alanschachter.

 Reply posted for sraymom.

My 8 year old daughter was on Remicade for about a year and after it got her on track. She was as close to normal as she had been in 3 years. Other than the fear of the IV's it really wasn't bad. Unfortunately her new Dr said she was building antibodies to the drug and they have switched to her to Humira (at home shot). It isn't working as well as remicade. Remicade helps alot of children. Good Luck. I know it is scary 

 Reply posted for Jenn D H.

A recent study "Long-term outcome of treatment with infliximab in pediatric-onset Crohn's disease: A population-based study" in the Inflammatory Bowel Diseases journal put out by CCFA reported that in a long term study of pediatric-onset Crohn's disease that 54% of the patients treated with it obtained and maintained remission and " Long-term responders (the 54%)  had a lower rate of surgery and improved catch-up in growth, especially when receiving scheduled therapy. "

 Reply posted for cougarmom.

sraymom

 Reply posted for sraymom.

HI, my 17 year old son took remicade for over a year and it was a super year, loved the medicine.  He felt super and back to normal teen for a year!  He did not have any negative reactions. The infusions and time factor was a pain, but wish we could go back to it.  However, after a year the medicine was not working.  We increased the dosage and started infusions every 5 weeks, but just quit working.  I wish he could have stayed on it longer.  He is now taking Humira shots every 2 weeks and while Crohns is in check, he feels achy, tired, and nauseous.  We are not happy about this medication, but doctor said he is going to have to learn to manage the side affects.  I am afraid we are getting to the bottom of the list for treatments.  My advice is the remicade could be great, but hold off as long as you can because once you take it and maybe have it not work later, you cannot go back to it.  If your child starts it and it is working, keep going with it and hopefully it lasys longer.  Wish I had better advice and answers for us all, just another parents fumbling around for answers.  hang in there!

 Reply posted for Lca.

Hi Lca!  Yes, she actually just ate some of the frozen yogurt tonight.  She does really like it, she also loves the honey glazed walnuts and coconut (totally delicious, I can't stop eating it either)!  We have found some nice things to eat, she does pretty well with it but you know how kids are with being "different" and making sacrifices.  Pizza and baked goods are what her dreams are all about.  Can't say I blame her!  I was raised by Italians and although food is a huge part of all cultures, it's especially important to Italians!  It kills me to not make a huge cheesy lasagna on cold Sunday afternoons.  And to not be able to greet her at the door with a nice cup of hot cocoa after sledding.  You know?  But we don't dwell and I don't make an issue out of it.  I cheer her up with other stuff.  She is such a tough kid, she takes so much in stride.  She always has a smile on her face, God bless her.  And you take care too, I feel bad for everyone who has to give up so much and try to feel good on a daily basis.  It sucks so bad!  I pray so hard that better treatments come down the line, soon.

 Reply posted for Sarah2008.

Hi Sarah2008, I'm sorry to hear about your baby.  These diseases are so horrid.  I try to remain hopeful for better treatments.  How is your boy doing?  Better I hope.  My girl is teetering between feeling ok and crappy.  I haven't made a move yet, we are gonna wait it out and see if she improves.  I have heard some positive stories about Remicade and of course some not so good ones.  This disease is so unique to each person who is cursed with it.  I get so bummed out about it, as I'm sure you do too.  Gotta stay positive.  As for the SCD diet, it sure is a pain in the butt and my daughter is not very happy with it.  She hasn't gained any weight.  We will wait that out too, see how things go.  It must be hard for you to try probiotics and stuff with a young boy too.  There's so many things to try - it's overwhelming.  I really hope your son is doing better, all the kids are in my prayers each night. 

 Reply posted for sraymom.

Hi Steph's mum. I had a look and the Healing Crow website has been archived to another site and there is not so much information on it now.

Have you tried making scd ice cream (with yoghurt  or French cream rather than the bean kind) or sorbet? It is really delicious flavoured with all kinds of fruit and  it is easy to eat and has lots of calories -  I can't bring myself to give up all dairy or honey and it helps me feel a bit more normal. Especially when the family are arguing over my ice cream rather than the bought stuff.  I have also been able to eat  a little 90 percent chocolate and use it for baking without noticing any problems although it is probably not a good idea until the gut is already well healed. All a bit sweet and not as good as the stews and veg but it might make it easier for a child.

 Reply posted for Lca.

Hi Lca, she has Crohn's.  I get so nervous because when she doesn't feel well she doesn't eat much and she is 11 and 62 pounds.  She starts to lose weight and becomes pale.  Bleeding increases.  I am watching her very closely - she isn't as sick as when she was in the hospital but that happened rather quickly -   I'm not sure how long to let her go on like this in the hopes that things will turn around.  I won't give up on the diet (her doctor said not to anyway which was encouraging) so I'm praying things change for the better.  The probiotics subject is so confusing!!  It's frustrating to say the least.  I will look at Healing Crow (not sure what that is but I'll Google it) and thanks for the reply and warm wishes :~)

 Reply posted for alanschachter.

Hi Alan:  I'll look into the Mutaflor again (they dont have much info on their website) but I'll investigate.  She is on Rifaximin now so that's good.  I'll ask about LDN too but the diet changes - I won't be able to force her to do that.  She is miserable on the SCD diet (well, frustrated and feeling deprived and angry is more like it) and simply won't comply with only meats and well cooked veggies.  It's hard to convey to a child--they just can't do some things that adults can tolerate.  Thanks for the info and reply!

 Reply posted for sraymom.

I'm sorry your daughter is having such a tough time. It's frightening to go round in circles with no improvement and not knowing if anything is really helping. Alan gives wise advice. Don't give up on scd too soon. The probiotics and antibiotics could be masking or interfering with its effects.

It was only the vast improvements in my skin condition that kept me going with scd for the first year. Uc was three steps forward and two (or even three) back again. Now I have absolutely no doubts about the effect on IBD. Looking back, usually comparing Christmas and summer holidays, every year is significantly better. Many intolerances improve once the gut is no longer leaky and this takes time. See Healing Crow for a great archive of Elaine Gottschall's answers to specific scd  questions. She always urged great caution with probiotics.

I have often read that the risk of bad side effects is much greater if Imuran and Remicade  are used together.

Keep going and keep reading. I'm sorry I don't know if Steph has uc or Crohn's. If it's uc there is some promising work on Phosphatidyl Choline in Germany but it's not available yet. Warmest wishes.

 Reply posted for motherlovesbaby.

That is encouraging, thank you!  How long has your girl been taking it?  I can't help but think of the negatives, it's my nature, but you are right, the children have to be happy, it's so important.  My girl is so not happy, she isn't feeling well and I think I have to go to Remicade.  I have the peace of mind knowing I tried all other routes possible, it has been nearly a year of trial, trial, trial.  I have to help her and if Remicade is the answer, then it will have to be.  Do you know the success rate by any chance?  I made the mistake of reading some horror stories online by Remicade users.  Dumb of me!

 Reply posted for sandpiper.

Hi Sandpiper, thanks for the reply... I wish I weren't so afraid but those potential side effects are like something out of a horror movie.  I wanted to exercise all options before starting Remicade and I feel I have at this point.  I want my girl to be happy and growing and be a kid (as we all do).  I have to just not think about it too much and do what will help her.  How long has your son been on it?  I'm afraid of anaphylaxis too because she has a severe peanut allergy and allergies on top of that (dont' know if that has anything to do with a remicade anaphylaxis or not) but still...  Also, I called my insurance company and I would only have a small deductible so that part is ok.  I break down in tears every time I think of her getting Remicade.  Crazy, huh~!

 Reply posted for sandpiper.

Hi Sandpiper, thanks for the reply... I wish I weren't so afraid but those potential side effects are like something out of a horror movie.  I wanted to exercise all options before starting Remicade and I feel I have at this point.  I want my girl to be happy and growing and be a kid (as we all do).  I have to just not think about it too much and do what will help her.  How long has your son been on it?  I'm afraid of anaphylaxis too because she has a severe peanut allergy and allergies on top of that (dont' know if that has anything to do with a remicade anaphylaxis or not) but still...  Also, I called my insurance company and I would only have a small deductible so that part is ok.  I break down in tears every time I think of her getting Remicade.  Crazy, huh~!

 Reply posted for Lca.

Hi Lca, we have been trying S.boulardii for weeks now (along with fish oil, L.Acidophilus, antibiotics), more Imuran, and more symptoms.  SCD isn't working, I'm really bummed out.  Looks like Remicade is imminent. 

 Reply posted for 22.

Sorry 22, I see your prior reply with that information I just asked you!  I haven't logged on in a while, been tough.  thanks!

 Reply posted for 22.

Thanks!  That is encouraging.  How long has your son been on Remicade?  My daughter is just not getting better and I think we may have to go that route. 

 Reply posted for sraymom.

My 13 y/o son has been on Remicade for more than a year now on and off... it's helped quite a bit though it's not a cure.  Without it, I'm certain he'd have needed surgery at this point so I am relatively happy he's been on Remicade therapy.

The downside is that he's hard to stick (in regard to the IV's) so it can be frustrating.  If and when better therapies come around, we'll research them but until then, it's a good choice in my opinion.

Hope that helps.

 Reply posted for sraymom.

Hi,

 Reply posted for sraymom.

To the mom that was asking about Remicade, it has been the one thing that has helped my nine year old daughter and it has been great. She was also on predisone as well and now has been off of it for a week. I have seen no noticeable side effects from the remicade besides the fact that she is not in the hospital and able to play, laugh, run, jump, and be happy. I hope that your baby does not have to go on it but it has definitely worked for us! Good Luck!

 Reply posted for sraymom.

Forgot to post this--to my surprise our medical insurance actually covers the cost less a very small deductible.  Yours might too if you are insured.  If not check out RemiStart, which covers much of the cost for the first year if you do not have a health care spending account (I remember looking into it when my son started, but we were not eligible because of our HSA).

 Reply posted for sraymom.

Hi--I just want to echo other parents who have had a good experience with biologics.  My now 15-yo son (Crohn's) went through 6-MP, then 6-MP and steroids, but just kept losing weight.  5 days after starting remicade he was a different kid.  I hope your child doesn't have severe enough disease to need it, but some do, and it can give them back a normal life.  My son now thinks about IBD as the focus of his community service, not because of symptoms!  I wish we had not been so afraid of remicade in the beginning.  Good luck to you...

 Reply posted for sraymom.

I used Mutaflor for a few months and it made  quite a  big difference but I don't use it all the time as it is expensive. I would definitely start again if I flared. I think it is recommended for uc and S.Boulardii is more useful for Crohns (haven't checked this recently). There are quite a lot of comments about Mutaflor increasing mucous and gas on the Healing Well forum but I didn't have any trouble.

VSL3 made me sick and I think it was at least part of the cause of a very severe skin rash. I used it before scd and with hindsight it may not have worked because I had  bad bacterial overgrowth and 'leaky gut'. It might work now  with scd but I am reluctant to try again.

Quite often  it is easier to see why things work or don't work a long time after the event so it might help to keep a diary. I often wish I had when I can't remember the seqence of events accurately.

 Reply posted for sraymom.

Yes, the Remicade company offers help. Luckily my insurance covers it. The main thing I like about Remicade is that he's been in remission the entire time. Other than going in for treatments chrons is not getting in his way of being a kid, and he continues to gain weight and grow taller.

 Reply posted for alanschachter.

Hi Alan:  Can I please have your email address again?  I've gotten a new computer and I don't have it on here.  Thanks!  I want to ask you where you buy those 3 items and such.  thanks

 Reply posted for alanschachter.

Hi Alan:  I will check out that study.  I saw online that there was a trial held over the summer too.  I will read your http article then I'm sure I'll have some questions for you.  Steph is on Acidophillus but not the 2 you mentioned.  I am going to look at that as well.  I'm gettting some info on that tonight.  Steph is also currently on Imuran and I think she has to be off that a while before starting LDN right?  Thanks!

 Reply posted for 22.

Thanks for the info!  I was just reading more on the biologics.  If I have no choice, then I'll have to go for it.  What scares me is the cost - I was reading that it is extremely expensive.  Have you found help in this area? 

 Reply posted for sraymom.

He started it in August of 2009 then 2 wks later than 4wks later and now every 8 weeks. Chrons was stunning his growth and his energy level was low. He has also grown about 7 inches.  They also do blood tests to make sure everything looks good.

Good luck!!

 Reply posted for 22.

Hi 22, thanks for the reply!  That is great news for your son, I'm really glad for both of you.  I sincerely hope I don't have to go Remicade (don't we all!) but I want to do my research and q & a just in case.  How long has your son been taking it?  What was the initial frequency?  Thanks again!  Happy Holidays

 Reply posted for Lizzies Mom.

Hi Lizzie's Mom!  Nice to hear from you, thanks for the reply.  I forgot which meds you told me your daughter was on for maintenance (I'm guessing it's a 5-ASA?).  I have read positive stories about kids doing really well on Remicade.  I just can't help thinking about the (possible)negatives, I am a pessimist by nature.  My gut says NO WAY, but if I have no choice then I'll have to do what's necessary.  I will try every route possible too.  It sure is hard and time consuming to try each and every possibility.  I feel I'm racing against the clock sometimes with not enough information at hand.  It's community groups like this one that really helps!  Thanks so much for your support and have a great holiday!

-Steph's Mom

 Reply posted for Lca.

Hi Lca!  Nice to hear from you, thanks for the reply.  I have read that about the 3 month flare, thanks for the info.  Interesting that that happens, and scary too.  My heart sunk when she told me she was feeling bad.  I will definitely stick to the diet and pray that it works for her.  Apparently the Imuran isn't working because she still takes that too.  That's comforting though, that you had the 3 month flare then improved.  Thanks, and have a great holiday season!

Steph's Mom

 Reply posted for AZMOM.

Hi Claire's mom!  Nice to hear from you, thanks for the reply.  I sincerely hope we do not have to go the Remicade route.  I will try everything in my power to exhaust all other possibilities.  My gut says absolutely not, no way, no way - but I cannot let her suffer so terribly and lose weight and quality of life.  What else can we do, right?  Have a great holiday!

- Steph's Mom

 Reply posted for alanschachter.

Hi Alan, it's Jenn - Steph's mom (and Laura's facebook buddy)!  We are still doing the SCD, Steph is at the 3 month mark and has started a flare.  From what I've read, a 3 month flare is common.  But, given the fact that she spent 10 days in MA General in June, I couldn't risk her getting really bad again so we got the Prednisolone and an anti-diarrheal.  She is feeling great again.  I am doing my homework in case...the prospect of Remicade is scary but I have to be prepared just in case.  I will try everything possible to not go that route, but if I have no choice then I have to.  We are staying on the diet still, and hoping and praying she does not have another flare anytime soon.

 Reply posted for sraymom.

Although we are not Remicade candidates, we know several families in our support group whose children are doing great and maintaining remission on Remicade.  Like others have said, they feel like they were able to get their lives back.

I'm with Lizzie's Mom on listen to your gut! 

We'll be thinking of you -

Claire's Mom

 Reply posted for sraymom.

I think it is quite common to have a flare at about three months on scd. I did, and  then an episode of iritis (it has never recurred) but after the flare  my health seemed to move up a level and I made good progress with the diet. If it seems to have been working so far don't give up and hopefully she won't need the Remicade.

Great news that she has been able to try the dietary route

 Reply posted for sraymom.

I would leave no stone unturned before starting Remicade.  Diet has played a key role in my daughter's ability to maintain remission.  She is on maintenance meds, but they are not immuno suppressants, have been on the market for a long time, and don't have the possible long-term side effects of the higher level meds.  

On the other side of the coin, I do know families from our support group that had no other options.  Their children had tried several meds and combinations and still could not gain control of the disease.  They held off on Remicade for as long as possible and after only 1-2 treatments felt they regained their lives and wished they had started it sooner.  

My best advice to you is to follow your own gut.   We parents have that intuition that speaks to us.   Often we don't listen, this is the time that you need to listen.  I wish you and your family all the best.

Lizzies Mom

 Reply posted for sraymom.

My son started Remicade August of 2009 at 14 yrs old for his chrons. At that time he couldnt get past 89lbs, and now weighs 130 lbs. It has been a miracle drug for him and allows him to live a normal teenage life which includes participating in basketball and baseball at the high school level. He currently receives it every 8weeks and also receives tylenol, benedryl and prednisone at the time of the remicade infusion. Good luck! Im praying for everyone with GI diseases.