Struggling with Remicade Decision

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itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 6/15/2009 7:40 AM (GMT -7)   
My daughter's GI has recommended that she start Remicade. As I have mentioned in the past, she has just had her pyloric stricture ballooned successfully and feels really well. We have not done any other drugs other than her original prednisone tapering off and Pentasa. We had to skip her original start of Remicade due to her Candida treatment of Diflucan. I am getting cold feet with this now that she has been doing well. We have another scope on Friday to make sure her Candida is cleared up and want to talk with her GI about the other options.

I know there are many who have had success on this, but I am concerned due to her age and the fact that once she starts this, she won't be stopping until her body rejects it.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


tataNickel
New Member


Date Joined Jun 2009
Total Posts : 10
   Posted 6/15/2009 8:05 AM (GMT -7)   
My mother has Crohn's and I can say that I believe Remicade is what has kept her out of the hospital and prevented more surgeries... She was approved for Remicade when it was very first approved and she has used it successfully for years... Prior to remicade she had six inches of her small intestines removed and was always in pain. I remember her never eating cuz she was afraid she wouldn't make it to the bathroom. There were times when she would not eat the entire day, it was so sad. She was in and out of the hospital a lot and the medications just never seemed to work. She gained a lot of weight on the steroids and they dind't really help. But when she started Remicade, I really believe it changed her life. She used it successfully a number of times, and while it is different for everyone, she has been in remission now for over five years...... It's not perfect, but she has not had a flare up. She swears by it... In every medicine the benefits should out weigh the risks. There are always side effects and always things that could happen. It's all very scary. I'm currently on prednisone and pergnant and very scared I might harm the baby. But I believe it is better to get treatment than risk something worse. Talk to your doctor about all the possible side effects. Chances are if they are prescribing it, they believe it is the best choice for your daughter.

But this is only my opinion. LIke I said I don't know. I go to the GI for the first time on Wed to see what is wrong with me...

Good luck to you and I wish you the best!

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/15/2009 10:25 AM (GMT -7)   
Just curious... Is she still on Pentasa?
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 6/15/2009 10:35 AM (GMT -7)   
Yes she is. It hasn't done anything for her, it seems. Now we are taking it out of the capsule because she is on Prevacid.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/15/2009 2:49 PM (GMT -7)   
Hi I know deciding to go on Remicade was a big decision for me and hope you can come to some decision for your daughter.I am glad to hear she is feeling better now after her stricture was balloned. Let us know how things are going.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~Blessed are they that have the joy of helping others~ Moderator gail


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 6/15/2009 3:15 PM (GMT -7)   
I realized today, during my Remicade infusion, that I have been on it since 2002.
No problems to report, no side affect, only lots of symptom free days.

I understand your concern though, it is a strong medication, and it really calls for a lot of thought and consideration before going on it, especially since you say she is doing well.

I guess one way you could look at it is a preemptive strike. Some Crohn's patients have a flare up, then it never resurfaces. Some of use get occasional flare ups, and then there are those that constantly seem to be in flare. Since it would be hard to know which way it would go for your daughter, you could put her on Remicade in hopes that it prevents any issues down the road. Even just having one flare could cause a lot of issues for someone of young age. Not just the disease, but missing school, social events, family time, etc.

Also, Remicade is only one of a number of drugs in this family. Even if she does eventually build up an immunity or develops a reaction, there are several more similar drugs that could be tried.

Remicade is the only drug of this family I have ever been on, but I have discussed my options with the GI. I know that I could get resistant to the benefits of this drug, if that does happen, he says I can try one of the others. Knock on wood, I've been able to avoid having a resection, and hopefully it can stay that way.

As others have said, all drugs have side affects, even Pentasa. Make sure you weigh all the pros and cons, and don't focus only on the cons.

I hope she does well whichever treatment you choose.
Matthew McKenna,
Joey's dad.

Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 6/15/2009 4:30 PM (GMT -7)   
I'm in the same boat, my doc wants me to go on Metho or Imuran but I keep saying no because of all the side effects. Well after this last weekend of not feeling well, I told my wife that I'm ready for the big guns so I can hopefully keep this DD away for a long time. I have a CT scan coming up this Monday and if the disease is back I'm going to go on Humira. I don't like it but I'd rather keep this disease away and not worry about another surgery in the near future.
It's a tough decision that you and your daughter need to make, I'd research as much as you can with her and then make a decision. You don't have to rush into anything if she is feeling fine.
Good Luck!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 6/15/2009 7:18 PM (GMT -7)   
Thank you all. the nice thing is that her GI called and wants to do another upper scope this Friday to make sure the Candida has disappeared. I think it will at least let us see if her inflammation is still there now that we have had a few weeks of her stricture ballooned to the desired size. I go back and forth with this, but then I always listen to the webinars with well known GI docs on CCFA.org and hear it is best to be aggressive with children because it reduces the risk of surgery. So for some reason, I hear this at the opportune time I suppose. (By the way, CCFA has a new one up if you are interested in listening.) It is probably the best decision ironically for her long term health. It definitely helps to hear those who have had long term success. My hope is that she can do well with this for awhile and there will be some other med that will have less side effects and be more effective. That might be the LDN studies done by Smith at Penn State. She is doing a Phase II study right now with children. It is what we all wish and pray for! Best of luck to you Wolfie40. It sounds like you need some relief.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 6/15/2009 7:40 PM (GMT -7)   

I am in the same boat as you at the moment. I am only 23 and after having crohn’s for 4 years, and having it ravage my body while I was being treated with Pentasa (which did nothing), I have finally sought the help of a REAL gastro, who specialises in IBD, and he believes Imuran and Remicade are the best decisions for me. Sometimes you need a medical professional (who you trust, of course) to make these decisions. In my case I have great faith in this acclaimed Dr so I am not as scared as I have been in the past. I have been taking imuran for 3 days and so far I have just been very tired. I am applying for remicade and won’t be able to receive it for another 12 weeks but will be on imuran up until then anyway. For me, the quality of life I could achieve on these meds outweighs the risks. Like others have said, there are risks with any/all medications. But it is worth giving it a big long think. I have gone head-first into this because I am determined, after having a re-occurring abscess/fistula since last November, that I will NOT let things get worse, and that’s what will happen if this disease is left to flourish in my system.

 

What are the side effects you are most worried about? I am still in the process of doing imuran/remi research, as I didn’t get a chance to do any before I went onto imuran.


itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 6/15/2009 7:52 PM (GMT -7)   
I guess I am worried about things that are posted here, lupus symptoms, lymphoma, and such. I feel much better after really assessing the statistical risks and listening to the webcast this afternoon. Maybe it is also the fact that we are going to the most aggressive treatment and there isn't much else we can do after that if it doesn't work. I am concerned about the long term use of Remicade. However, if I continue to move up the drug chain and she doesn't have any response to those then we have wasted valuable time trying to get her into remission. See, I could argue with myself all evening :D
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/15/2009 8:56 PM (GMT -7)   
You had said before that she is doing really well now... any chance she's already in remission?

itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 6/15/2009 9:04 PM (GMT -7)   
Well, I suppose it's possible EMom. Where her Crohn's is located is so different than most, her symptoms are not typical of Crohn's, more like GERD. We will find out if she has inflammation on Friday with the scope. She has had spaghetti for the first time in almost a year and had no problems. (It is her favorite thing to eat and it was tough for her to go without.) We thought we would try it last night to see how she would do and she has had no problems. We have kept her on digestive enzymes, fish oil, and probiotics. I guess if she is showing signs of remission on the scope, that makes things much more interesting.

Since her stomach wasn't emptying before the complete dilation, its possible that she had inflammation due to the food sitting there and irritating things. Her ulcers are healed too so that has taken pain away.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 6/15/2009 10:02 PM (GMT -7)   

Well she’s extremely lucky to have a mother who is so proactive about everything, I can say that for sure! Being young and a girl and having this scary illness can be very alienating, so it’s nice to have someone ‘along for the ride’ as you say.

 

I know personally I spent a good couple of years in denial about my illness. I would eat things that I knew would make me sick. I didn’t want to believe I actually had this awful disease. And I paid the price.

 

I’m also scared about the side effects. But with the severity and spread of my crohn’s, I know I will end up in a much worse situation if I don’t take these drugs. So I guess it is a very individual thing. Maybe you can get more of an idea from your gastro about how severe her crohn’s really is, and how likely it is that she will stay in relatively good health as she is now, or if he/she believes it is just a matter of time before the mother of all flares comes back. Do you think he/she would offer that information? How does your daughter feel about it all?

 

 


itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 6/16/2009 8:55 AM (GMT -7)   
My daughter doesn't seem to want to be heavily involved in any of the decisions right now. I think there are two things going on here. One is that since she is young (14) she is in a bit of denial about how this could play out. Once in awhile she asks questions and seems to want to know more. Other times she doesn't want to discuss it. She gets irritated when we talk about foods she probably needs to avoid or eat in moderation. She is a very responsible teen, but not so much when it comes to food. The other thing that might be contributing to her passive behavior is that she is not in any pain and doesn't have the typical diarrhea that comes with a flare.

As far as her ped. GI, I am not all too convinced he is confident in treating this, and it may just be my issue not his. He has never had a case of Crohn's like hers. There is another GI in the practice that did the dilation who says he has seen and dealt with this type of Crohn's but there doesn't seem to be much communication between the two. Her ped. GI was ready to have surgery instead of doing the dilation. The other one felt we should try the dilation first. So there are some trust issues there.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 6/16/2009 3:23 PM (GMT -7)   

Well I’m glad to hear she doesn’t have any diahorrea or pain. I had extreme fatigue weight loss blood loss diahorrea and pain as soon as my crohn’s appeared when I was 19, but even then, I was in some sort of denial for quite a while – and would also get mad when my parents would talk about what I could/couldn’t eat. I knew I had the disease, but I just didn’t want to accept it. It s a tough thing for anyone to accept, I guess.

 

I don’t blame your daughter at all for not really wanting to know the ins and outs of the disease. I went online and researched Crohn’s, as did my dad, and the results were pretty terrifying. Sometimes what you read on the net can do much more harm than good.

 

If she is lucky enough to not have severe symptoms then I can understand your reluctance to jump right into the hard meds. It’s only natural!! I wish I could give some better advice…..


inawhirlwind
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/19/2009 12:44 AM (GMT -7)   
Hi my dd was told she has Crohns just on the 5th of June we spent 4 days in childrens hopital. She is only 9. This is so sad to see so many children have this I had no idea. And yes reading the internet is so scary. I can not sleep tonight because I go through my worry times.. She was started on prednislone and Prevacid with a calcium carb and Multivitiam. I too am worried about remicade. Her GI doc wants her to get started as soon as possible. So of course I went on line and started reading about remicade and now am freaked out about it. She is scheduled already to go next week. He wants to be agressive with it. I see, but ... She doesn't handle pain well at all and really never has. She hated the IV in the hospital. The Treatment is going to be hard on her and me. knowing that there is other people out there going through this helps. Does anyone else just sit and cry for your child feel like such a baby. So hard to make the decisions on what would be the best. anyways thanks to everyone posting it may not feel like we are alone here.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/19/2009 5:52 AM (GMT -7)   
inawhirlwind said...
Hi my dd was told she has Crohns just on the 5th of June we spent 4 days in childrens hopital. She is only 9. This is so sad to see so many children have this I had no idea.


Welcome, inawhirlwind! I am so sorry you and your daughter are dealing with this, and yes it is scary. And yes, I cried and cried for days after my son's diagnosis. Relaxing wasn't even a consideration for months and months. My faith (and his) helped immensely during this time, though. Also, thankfully the Specific Carbohydrate Diet (from the book "Breaking the Vicious Cycle", by Elaine Gottschall) has made ALL the difference for him along with some key supplements like probiotics and digestive enzymes. Please feel free to email me personally (click on little yellow envelope to the left) if you'd like my list of resources or if you'd just like to talk with another mom.

You stumbled across a great place to be here. There are so many people willing to share their experiences and help answer questions. Our doctors at a major children's hospital were not forthcoming, so I really have benefited from this forum! Hopefully it will be a helpful resource for you, too!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 6/19/2009 7:41 AM (GMT -7)   
We had the scope done this morning and unfortunately the inflammation is still there and possibly worse. The dilation still is holding up though. Again, after much research and listening to webcasts from prominent GI doctors, we have decided to go ahead with the Remicade next Friday. I don't want to wade through all the other options and still be where we are with more damage. Our goal is prevent surgery in the near future and I think this probably the only way to do so. Our other concern is her growth. This is a crucial age (as with any adolescent) and I want to make sure she is getting the nutrients she needs. I have asked for a full work up on what she is lacking in that area. This will be done next week also. It's time to take the dive and move on. No more second guessing now!

inawhirlwind, my prayers go out to you. Like all parents of a child with a disease and those here who have been diagnosed with Crohn's, you will go through that mental process. Surprisingly children adjust well and learn how to deal with things. They just need a good support system and information that is age appropriate. As long as keep things in perspective when searching the internet, you can get very good information. Someone told me (it might have been on this forum) only spend 45 min a day searching for the information online. Otherwise you become overwhelmed. This forum is a good source, but you have to remember most people who post are going through a difficult time. There are many people who don't post on the internet who are in remission. Welcome!
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


inawhirlwind
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/19/2009 9:54 AM (GMT -7)   
Thanks so much for your support Emom and itainteasy. My dd also didn't have diareaha she had the oppisitie problem. Her stomach doesn't hurt right now. But I do believe stress and diet have alot to do with it. She is a worry wart. And we just sold our house of 12 yrs and our oldest had a baby. I got the makers diet have had it before it is in a box still somewhere. I will check out that book Breaking the Vicious Cycle. Thank you so much again nice to connect. :)

inawhirlwind
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/30/2009 11:44 AM (GMT -7)   

Hi everyone.. I wanted you all to know my dd who is 9 years old has started her remicade treatment. On the 25th of June. We so far have no side effects and she is almost out of her prednislone and prevacid. So we will see how it goes with that runs out. She has had the Constipation part not the other through the whole thing. She has gotten better, but I also added metamucil no taste or grit kind to her diet. It has helped her.. I haven't tried some of the other things for her yet. Have increased her fish intake and taken her off of Milk. Only Lactaid Milk.

Anyways just an update on her.


itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 6/30/2009 11:50 AM (GMT -7)   
We started my daughter on Remicade last Friday the 26th. She woke up on Saturday and said her stomach felt different. Our big problem now is that she is bloated and burping with sour taste and stinging in the back of her throat. She vomited last night because of it. She had a scope done the previous week and she again has an ulcer or two in her duodenum. Her GI started her on Carafate now in addition to her Prevacid. It's always something.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.


Daniel Stuart Morton
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/1/2009 7:52 AM (GMT -7)   
I am 62 years old and was diagnosed with U/C 6years ago, I was in remission from 2006 until Jan 2009, for the last 7 months I have had constant Diarreah (cant spell that word) without any blood. My bathroom visits vary from 3-10 times a day. I do not get many cramps but have lost about 30lbs since Jan 2009.
The only medication I am on is ASACOL that I take two tablets( 800 mg each) 3 times a day. I also take 4 Calcium tablets with vitimin D every day that has dramatically improved my bone density.
I have found foods with spice in ( that I love) really agrivates my condition and my bathroom visits excualate!
I also found Beer to have a similar effect. as well as Bread, oats, and wheat products
My Doctor wants me to start on Remicade next week and I am concerned. I read some of the comments on this subject, and I do not feel I am ill enough? or am I in denial?

itainteasy
Regular Member


Date Joined Mar 2009
Total Posts : 46
   Posted 7/1/2009 9:25 AM (GMT -7)   
Daniel...You might be in a bit of denial ;) I think the biggest reason why so many doctors are now looking at Remicade, Humira, and Cimzia is because there is research showing that being aggressive with IBD has cut back and/or delayed the number of surgeries. It is a tough decision and it is still too early to tell for us if we made the right one.

For my daughter's Crohn's we seem to be battling the ulcer. Other that that, she has no other symptoms. We now know that Flagyl worked on these, but we cannot take it now since she is still in the beginning stages of building up the Remicade. In a month we could do Flagyl (we would take Diflucan with it to prevent the last nightmare) for a 10 day period and see if that gives her any relief. Until then, we are trying Carafate with her PPI.
Mother of teenage daughter with Crohn's.
Diagnosed Feb. 26th 2009
It's a rollercoaster ride,
but we take it one day at a time.

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