I need advise on Remicade. My husband doesnt want to do it.

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nativeblue
New Member


Date Joined Nov 2006
Total Posts : 19
   Posted 5/8/2008 9:48 AM (GMT -7)   
 
Hello Everyone.............

The last time i was here everyone was so helpful with all my questions. My husband was diagnosed with CD two years ago. It has been the longest two years of my life. Through the ups and downs. Well anyways................
On Monday he went in to have another Colonoscopy just to see his progress. It looks like his CD is very inflamed. His GI said that he is surprised that he is still working. It made me feel so awful because he has been in such pain, but not letting me know. He has to now take Remicade. Can anyone tell me the process of Remicade? I have read the paper work on it but i want to know if anyone has been on this medication. It looks like he will be on this for the rest of his life. My husband doesnt want to do it so i just need some in put from someone who has been on this.

Thank you,
 
Trudy
 
 

 
Trudy~~~
 
Husband has UC
 
 
Azathioprine 2 1/2 pills a day
Presidone 1 pill a day
Colazal 3 pills 3x a Day
Caltrate 2 pills a day
Vitamin C
Multi Vit
 


sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1432
   Posted 5/8/2008 10:45 AM (GMT -7)   

 

Hi nativeblue,

I'm sure you will get a lot of different responses on this one. I started receiving Remicade infusions in December of 1999 and I still am receiving it every 8 weeks since then.

For me, it has been a lifesaver. I had no reactions to it and it helped me tremendously! I was also suffering from arthritis secondary from CD and it took all my arthritic pain away. I can tell when it is time for my next treatment, because 2 weeks prior to it the arthritis starts to come back.

I was doing so well on it my Gi wanted me to try for every 10 weeks. Unfortunately my arthritis came back big time by the 9th week and then when I called to get my appt. moved to ASAP they couldn't get me in until the 10th week. By then I was practically crippled from the arthritis and pain. If I had waited any longer I know for sure I would have been in a wheel chair.

I was able to go into remission for many years but since May of 2007 until now I have been under a tremendous amount of stress and I have been having many flare ups. No diarrhea, just lots of bloating & pain.

I had a partial obstruction in June 2007 and was admitted for that and fed steriods and antibiotics through I.V. and got better.

In November of last year I had another small bowel follow thru since my symptoms were coming back and we found that my crohns has not spread but had now developed strictures. My crohns affects about 12 inches of my terminal illieum. Since then to present I have been off/on with the entocort and alternating between constipation and normal bowel movements which is common for someone who has strictures.

The last 2 weeks for me I have been entocort free and feel pretty good, but I still have the bloating at times.

So for me it helps a lot. I am also taking Methotrexate. I would recommend it as it has been wonderful to me.

I'm sure other's will chime in with their opinions.

Good Luck.

P.S. I just remembered you said that you're husband didn't want to try it. It is his call though. There are other options out there. He should discuss this with his GI.  Humira is another option.

~sukay~
Diagnosed Bipolar - August 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 
 
Leo Buscaglia

Post Edited (sukay) : 5/8/2008 11:49:45 AM (GMT-6)


nativeblue
New Member


Date Joined Nov 2006
Total Posts : 19
   Posted 5/8/2008 11:08 AM (GMT -7)   
Thank you Sukay for your advise. I think for my husband it's a change. He doesnt do well with change. He is always the one everyone counted on for things, and now he has to ask for help. I'm sure that once we get everything taken care of with our insurance he will do fine. He has a lot of problems with arthritis. SO this may help him. Again thanks for your comments. I really found it to be very helpful.
 
Trudy
 
Trudy~~~
 
Husband has UC
 
 
Azathioprine 2 1/2 pills a day
Presidone 1 pill a day
Colazal 3 pills 3x a Day
Caltrate 2 pills a day
Vitamin C
Multi Vit
 


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 5/8/2008 11:10 AM (GMT -7)   
I've been on remicade since Jan 2002. I love it. I don't know where I'd be without it. It has been an absolute lifesaver for me. After my very first infusion I noticed IMMEDIATE improvement (within the first 24 hours) and it took a while for the doc to find the right time frame for "maintenance" (every 6 weeks for me), but I honestly believe I would have had surgery by now if it weren't for remicade and a few dietary changes.

When I started it I was so sick that it was my only other option besides surgery. I was too sick and too desperate to say no. It could really work for him and make THE difference. Maybe he doesn't understand what he's saying "no" to.

You can't force your husband to take it, but what exactly is his aprehension? Maybe you can find out what his concerns are and then go from there. Maybe his GI can more thoroughly address his concerns and help him feel a bit better about this option.

nativeblue
New Member


Date Joined Nov 2006
Total Posts : 19
   Posted 5/8/2008 11:19 AM (GMT -7)   
Stef17,

I feel that his aprehension is not knowing what it is? Remicade that is. His GI has not gone over anything with us. Just what i have read online about it. That is why i wanted to get everyone's feed back on it today. We are going through with all the paper work to start the process of Remicade. My husband is at the point of he is just sick of being sick. Sick of missing our childrens sporting events, sick of not being able to do things with me, and sick of not being able to coach. I hope with the info i tell him when he gets home that he will warm up to the idea. Thanks for taking the time to answer my question.

Trudy
 
Trudy~~~
 
Husband has UC
 
 
Azathioprine 2 1/2 pills a day
Presidone 1 pill a day
Colazal 3 pills 3x a Day
Caltrate 2 pills a day
Vitamin C
Multi Vit
 


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 5/8/2008 12:42 PM (GMT -7)   
Trudy, I'm sorry he's been so sick. It really is the pits when you feel like life is passing you by and you can't do anything about it. I know it's easy for me to say this, but... if he wants his life back, he really truly needs to give remicade a try. The worst part about the entire thing is getting stuck with a needle for the i.v. and that is just a pinch. The rest is a piece of cake. You sit there for 2 hours and then you're off. I also have arthritis and the remicade keeps that in check too. I hope he can get more information and feel more comfortable with the decision. Remicade gave me my life back. I wouldn't have my 2 children if it weren't for remicade - and I wouldn't be able to keep up with them either. Whatever he decides, I hope he can get some relief! Best wishes to you both.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 5/8/2008 5:56 PM (GMT -7)   
Hi, I have been on Remicade for almost 5 years and also love it. I now about the side effects. I don't let it bother me. With having Crohn's I enjoy a normal life.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 5/8/2008 5:59 PM (GMT -7)   
I can understand his not wanting to start, but I can honestly say that it was one of the best decisions I have ever made. I have been on it for 3 1/2 years. It has given me my life back. Before I started, I joint pain so bad that I could hardly walk. I had a couple of fistulas, a huge abscess, total exhaustion, and I lived in the bathroom. We had to move in with my parents because I could no longer take care of my 2 toddlers. I now work part time, exercise, and do anything and eat anything I want. He won't be on it the rest of his life just for the simple fact that it won't work that long for him, but once he starts, he will need to stay on until it stops working. Good luck!

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 5/8/2008 6:25 PM (GMT -7)   
I'm so sorry to hear about your husband. It's not an easy thing to live with. I've had CD for almost 10 years now and I can't tolorate the Remicade. I landed in the hospital after a Remicade treatment. But please don't let this scare you. It happens with very few people who do the treatments.
My system can't tolorate most things. about the only thing I do good on is Steriods or Cipro.

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/8/2008 6:30 PM (GMT -7)   
Hello,  I'm so sorry to hear he's feeling so bad.  Not fun.  He obviously needs something to help his Crohn's.  I took Remicade for about 5 years along with Methotrexate.  I had some apprehension but honestly when your so sick it's nice to have something that will help.  If he's dealing with this quietly, it must be horrible for him.  I had to stop Remicade because it stopped working and now take Humira.  Remicade changed my life for the better.  I could leave the house in the morning without fear of needing a restroom a minute later.  We all make choices and have to way the pros, versus the cons.  Make sure he keeps up on his labs. I had benedryl and tylenol before each infusion.  They are time consuming so bring along books, snacks etc..   Keep on schedule.  They are super duper expensive so make sure you have it authorized.   I have heard that the care is better at the hospital than clinics, meaning you have more privacy and they feed you a meal.   Hope this helps.  Best of luck to you, let us know how it goes.  HUGS

nativeblue
New Member


Date Joined Nov 2006
Total Posts : 19
   Posted 5/8/2008 8:33 PM (GMT -7)   
I want to thank everyone so so much. I talked with my husband tonight about all the feed back from everyone. We are just waiting to see what the insurance is going to pay. I hope they cover most of it but if not we will make it work. I just want my husband to feel better about himself. He has been so down. We have a very strong support group which i am very thankful for. Now i have a new online support group. Thanks to everyone that took the time to give us advice. Talking with everyone here gives me a bit of insight on what he feels. I know he wants to protect me from his pain. I just want to be his rock like he has been for me.

thanks again

Trudy
 
Trudy~~~
 
Husband has CD
 
 
Azathioprine 2 1/2 pills a day
Presidone 1 pill a day
Colazal 3 pills 3x a Day
Caltrate 2 pills a day
Vitamin C
Multi Vit
 


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/8/2008 8:37 PM (GMT -7)   
Trudy, What a great wife. The fact that you are seeking out information to make his life better is so wonderful!! Please continue to uplift your hubby and take care of each other. You can make it through this, just a stumbling block that will make you stronger!!!
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