Does Flair mean Remicade has stopped working

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Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 3/13/2008 6:48 AM (GMT -6)   
My son (18) started on a low dose of Remicade which didn't work, so he was increased to the highest dose they will put him on.  He was doing amazing, felt great no symptoms of UC for 6 months (3 infusions).  He had his last infusion 4 weeks ago.  He was also under alot of stress due to scholarship interviews and putting a portfolio together and ......
 
Here we go again. It started this weekend with gasiness and more frequent trips to the bathroom and this morning there was blood.  I have calls in to both his doctors, but we all know how that goes.
 
Just wondering (I need some positive input).  Could this just be the stress and he'll be OK after another infusion or does this mean that the Remicade isn't working anymore?  And then what???
 
Thanks!
 
Mom that's going crazy with worry. 

Mother of 18 year old son
Remicade
6MP 100mg


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 3/13/2008 7:49 AM (GMT -6)   
He's probably just about ready for another infusion. Good that you called his docs; maybe try some rectal meds to get him over the hump. I remember it took me a good six infusions before I stopped having symptoms just before my infusion. Another member had the same problem, and he used rectal meds and it seemed to help. You might want to check and see if he can up his infusions to every six weeks to see if that helps.

Carol

Remicade - will have my 21th infusion on April 17.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/13/2008 10:13 AM (GMT -6)   
I wish I had some encouraging words for you, but that's exactly what happened with me also- had good luck at first with infusions, started to lose effectiveness. Upped the Remicade dose to 10mgs/kg, worked great at first. The by the 3rd high dose infusion, my symptoms would return in about 3-4 weeks. We went to a 6 week dosing schedule, which is not ideal as the high Remicade dose & the 6mp dose cause one to be seriously immune-suppressed. Anyhoo, the 6 week dosing schedule didn't pan out either, symptoms return w/in 4 weeks. Talk to his GI- or have him talk with the doctor- unfortunately, I have heard about this happening a lot with people who become Remicade resistant. Ask how long his GI will allow him to be on a 6 week, high-dose Remicade schedule. And then what??? Well, I guess that's up to your son. Good luck!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 3/13/2008 10:19 AM (GMT -6)   

Eva Lou -

I notice you are still on the Remicade, so does it help enough in order for them to keep you on it and you just start flaring before the 6 weeks are up?  I get so scared b/c he's only 18 and who knows what the long term effects of all these stupid drugs are. He wants to go off to college in the fall, but how can I send him off someplace if he's getting sick every 4 weeks.  I'm so frustrated and I feel like nobody gets it (except everybody here).

Thanks for letting me vent!

 

 

 


Mother of 18 year old son
Remicade
6MP 100mg


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 3/13/2008 10:26 AM (GMT -6)   
Lew, you've heard some negative news, but really, there are many who have benefitted from the Remicade and are not posting here because of their success. My late husband was also having the same problem as your son, but after much discussion on this forum about rectal meds, I begged him to try them. The doc gave him Rowasa, and he went into Remi remission with his infusions every six weeks and rectal meds. He was able to stop the rectal meds after a few months -- after he got over the hump. This may or may not work for your son, but it's something you can try. And for what it's worth -- my nephew had a liver transplant at 13 years old, and has to take several meds just to keep functioning....I look as that as a life saver. He's 26, 6'3, and doing very well.

Carol

Remicade - will have my 21th infusion on April 17.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/13/2008 10:40 AM (GMT -6)   

I'm not knocking Remicade, Loneylane, don't get me wrong- it gave me at least a year of relative comfort. I do not however think it's the miracle drug of UC's future. I just don't think the biologics are where the "cure", if there is any, lies. That said, I'm not going to sugarcoat my experiences with it- bottom line, it stopped working, whether due to my body building antibodies to it, or just myself having refractive UC. And if you look on the ostomy forum, there are many, many, MANY people who were on Remicade for ages, & boom, it just stopped working. It doesn't seem to be all that uncommon. As far as being on the Remicade still- I had an infusion March 3rd, the double dose. It is my last one, in all likelihood. I will be going for surgery early May, & the surgeons do not like you to have Remicade in your body, if possible, as it impedes healing.  Even now, it does make me feel better- prior to the infusion on the 3rd, I had been symptomatic for about 2 weeks. It helps, but only for a few weeks.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 3/13/2008 11:04 AM (GMT -6)   
You bet I know; I have the fear everyday that it might stop working. And I know you are not knocking Remicade, but I did want to give Lew another option. It's scary sometimes because a lot of people that post on here haven't had a lot of success with Remi. And there are a lot who have had success that are coming back to say it stopped working.

Carol

Remicade - will have my 21th infusion on April 17.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/13/2008 11:17 AM (GMT -6)   
It is scary- my GI never told me that it could just "stop" like that... when I started on it with great success, he said "I think you're going to be fine!". Now here I am! Not that I'm bitter about it- truly, I'm not. It just burns me though the way some doctors build up Remicade to be this miracle drug, & it really isn't- it's either gonna work or not, like everything else. And I swear the only reason they hesitate to prescribe it, & bill it as a "last resort" is because it's so expensive. But I have been finding, after doing some digging, that for a loooooot of people, it just stops working, even after years & years of success. Ugh... Ah well, I guess the pharmaceutical fight continues!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 

Post Edited (Eva Lou) : 3/13/2008 11:27:14 AM (GMT-6)


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 3/13/2008 11:40 AM (GMT -6)   

Thanks for everybodies input.  I have come to find out that some people are just very resistant to any of the medications.  We have at least been lucky that he really hasn't suffered any negative side effects from anything.  His GI doctor has called back and wants a stool sample, a CBC, a comprehensive metabolic panel and a Remicade level test.  He also wants him to start on 20 mg of Prednisone which he is NOT HAPPY about.  I'm going to ask the doctor if we can try the Rowasa first before we resort to the Prednisone.  The whole thing just really sucks as you all know!

Thanks again.  People here at least respond and talk to you unlike sitting around for hours to hear from the doctor's office where they really don't know what to tell you, but anytime you make a suggestion, they tell you it won't work.  Can you tell I'm really tired of the whole thing and it's not even me who's sick.

 

 

 


Mother of 18 year old son
Remicade
6MP 100mg

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