Remicade fading away...

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Regular Member

Date Joined May 2005
Total Posts : 92
   Posted 2/25/2009 12:16 AM (GMT -6)   
I started Remicade in June of 07. It worked instantly and I continued to get relief from 5mg at 6-8 week intervals. Life was finally normal and I could eat whatever I felt like, whenever I felt like.

But recently the medicine has stopped working as well as it use to, only lasting 2-3 weeks. My GI wants to double the dose now and I'm due back in for another treatment this Friday. I know this medicine is dangerous, and I was hesitant to start it to begin with. Having a double dose does not sit well with me because of possible side effects and repercussions.

Anyone have any experience like this and taking the max dose? Anything I should look out for? If this medicine does not continue to work I do not know where I will turn. I cannot continue to live my life in this constant pain that we are all too familiar with.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 2/25/2009 5:27 AM (GMT -6)   
Hi I did one double dose and that was my last. I got sick and went into a bad flare. Where is your crohn's at ? Maybe Humira is down the road for you. Wishing the best for you. Hang in there.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 2/25/2009 8:23 AM (GMT -6)   
When it started to lose effectiveness for me, we just increased the frequency of the IVs, but it still didn't help and then I started having allergic reactions to it (and those were scary!).  I had to stop Remicade and was so devistated.  But, then I got on Cimizia (and now Humira instead) and I've got to say that stopping the Remicade ended up being a blessing.  So, there are other options out there for you to try if the Remicade isn't helping anymore or if you are too concerned about increasing the dosage. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

Regular Member

Date Joined May 2005
Total Posts : 92
   Posted 2/27/2009 2:08 AM (GMT -6)   
The problem with Humira is that I have severe needle phobia. I can barely take them putting the IV in me every 8 weeks. I just dont think I could handle giving myself a shot every few weeks.

Regular Member

Date Joined Jun 2008
Total Posts : 221
   Posted 2/27/2009 6:35 AM (GMT -6)   
I take a double dose the only thing I dislike about it is how long it takes to administer it. I usually feel tired for a day or so then I am back to normal and am doing pretty well. My GI thinks I am on to high of a dose though and is thrying to cut back. I am now going in every 5 weeks instead of 4 but we will see how things go. Give it a try the reason I went double was because it only worked for a few weeks.

Regular Member

Date Joined Mar 2009
Total Posts : 50
   Posted 3/2/2009 1:48 PM (GMT -6)   
Remicade was a miracle for me for about 6 months, then it stopped working. :(

-Diagnosed with Crohn's at age 16
-Bowel Resection done in Oct. 2005
-Currently take Asacol

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 3/2/2009 2:06 PM (GMT -6)   
Hello Mintyamy! Welcome to the Forum!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Regular Member

Date Joined Mar 2009
Total Posts : 50
   Posted 3/2/2009 2:41 PM (GMT -6)   
FallColors said...
Hello Mintyamy! Welcome to the Forum!

Thank You! I have had Crohn's for 7 years now and never seeked the help of others like this.  It is so refreshing to read about others just like me!

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 3/2/2009 2:51 PM (GMT -6)   
Remicade was my miracle drug for a long time. I tried a "double-dose" one time, and I felt like I had been run over and beaten for about 3 days... no serious and/or life-threatening reaction, just kinda sucked.

In the end, more frequent doses (sometimes every 4 weeks) worked for me better than larger doses.

I was scared to death when I could tell the Remicade was wearing off, and I COMPLETELY understand about the Humira. I went through with the Humira just long enough to almost lose my marbles (having my hubby give me the shots was STILL too much for my mental well-being). After two rounds of Humira, I threw a fit and got my doc to approve me for Cimzia instead. With Cimzia, a nurse comes to the house (paid for by the drug company), and gives me the two shots in my belly. It really is NOT that bad, and as long as the nurse goes slow, it doesn't even really hurt. That's coming from a baby, just so you know.

There are other options out there, when the time comes. Meanwhile, good luck with everything, and I'll be sending good thoughts your way.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (loading doses 2-12-09)
Probiotics, Digestive Enzymes, and Prednisone

Regular Member

Date Joined Feb 2009
Total Posts : 33
   Posted 3/2/2009 4:02 PM (GMT -6)   
Remicade was also my wonder drug but over time i found the effects wearing off quicker and quicker to the extent that after 6 or 7 months it didn't work at all. I was then put on Humira which ended up doing exactly the same.

However I do know of people where these drugs have been the miracle cure and they are now in complete remission,

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 3/4/2009 5:44 PM (GMT -6)   
I had the same thing happen to me and soon found myself in the hospital after a severe flare. I was between surgery to remove part of my colon or Humira - and a severe phobia with needles. I got over it =)

I have been on Humira for 2 years now and I still freak myself out everytime. I have to give myself a pep talk each time but it's SO WORTH IT. Really, once you feel better the shot is furthest from your mind.

Regular Member

Date Joined Aug 2008
Total Posts : 305
   Posted 3/4/2009 6:24 PM (GMT -6)   
You guys are funny! I was afraid of shots when I was young but now I give myself a b-12 injection once a month and don't give it a second thought. Funny how we all percieve things differently. By the way, I have an appt with my GI on the 23rd because my Remicade is losing its potency earlier each time too. I get around 5 weeks of benefit from it right now and then nothing. My arthritis comes back with a vengence.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 6 months ago. Now on Remicade and iron. Feeling like a champ!
God Bless. Tony

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