Remicade, how long is too long?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 1/28/2009 1:39 PM (GMT -7)   
Sorry if this has been asked before, but I am just wondering what the longest time is anyone has been on it till it has started working? I've had 3 infusions now and it's not working, but I don't know how long I should wait before I give in and admit it's not going to work. I was on it before, but I really can't remember how long it took to work, I just know it did eventually because I was in remission for 3 years.

I know some people notice a difference after just one infusion, but I don't seem to feel any different after I've had mine.

Got my next one on Monday and really hoping I see some marked improvement this time, even if it's only slight. Would give me some hope. I get it every 8 weeks at the moment, but they are considering upping it to every 6 weeks and then doubling the dose if it doesn't work.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2831
   Posted 1/28/2009 2:55 PM (GMT -7)   
I hope you get some good responses. Just wanted to chime in that I am sort of wondering what to do too- it seems to take a few days to have any effect on me, seems to then have a fairly pronounced good effect for a week or so at best and then little to no effect.... not exactly stellar for something that costs a ton and is supposed to last for two months. I've had four infusions and they are likewise still mulling over whether to decrease the intervals, increase the dosages, or both. Hope we both get relief soon.


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM (acupuncture & herbs)
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 1/28/2009 3:44 PM (GMT -7)   
The only reason I am still hopeful of it working is because it worked for me before, but I know that it may not work a second time, I'm just grateful that I haven't had any adverse affects to it so far after not having taken it for so long.

I hope you get some more relief from it, and will let you know how mine goes on Monday if I feel any better after it.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 1/28/2009 5:27 PM (GMT -7)   
Hi: thanks for asking this question too. I am going for my second infusion tomorrow. I haven't seen any improvement although I've only had one infusion. I was on Humira for eight months, kept thinking it was working, but it really didn't do anything. This is one of my last options too. I've basically been flaring for about 4 years now and nothing seems to work. Please keep me posted on how both of you do. I will too!
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others
Past meds that worked: Cipro, Prednisone
Just stopped Humira 1/1/09
Starting Remicade 1/15/09

Daily: Folic Acid, Vitamin C, Fergon Iron Supplement, Omega 3, Multi-Vitamin


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 1/28/2009 7:19 PM (GMT -7)   
I tried Humira for a couple of months but just got worse on it, and developed an infection and was constantly having chills and a high temperature then it I couldn't keep anything down so had to go into hospital for 16 days where I went on Pred again. That made me feel abit better but as soon as I got down to 10mg of pred I started getting worse again. Had to come off the humira, but not sure I gave it much of a chance to work. I would like to try it again if the Remicade doesn't work, but whether my consultant will let me is another matter.

Hope you get some relief from the Remicade Dietcoke, it was a godsend for me the first time, the only thing thats put me in remission in years. I'm just annoyed that they took me off it when it was working so well, but tbh it might have stopped working by now anyway. But then again, it might not.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 1/28/2009 10:57 PM (GMT -7)   
I was on Remicade for about 14-15 months and I had absolutely no changes to my condition.  I eventually decided on surgery and my GI kept up the remicade (one more infusion) until my surgery date, saying she didn't want to drastically change anything just before surgery. 
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.
2001 Dx'd with UC.  No remission.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returning after resuming 6MP.


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 1/29/2009 2:32 PM (GMT -7)   
i had the 3 loading doses and it still wasn't working..it wasn't until my 4th or 5th that i really thought it started to work...i just had my 6th one last week and feel almost pretty normal..
21 year old female
Diagnosed with Moderate to Severe Crohn's August 2008 (hospitalized for over a month right after)
Taking...asacol 1 2xs/day, 6mp, nexium, miralax, benefiber, and Remicade every 6 weeks
As needed...zofran, lortab, tylenol 3, bentyl
Off of Prednisone!!!


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 1/29/2009 3:38 PM (GMT -7)   
ImAud, that's reassuring to hear that it wasn't till your 4th or 5th that you saw any improvement. Means I still have hope.

78SilvAnniv, Sorry you didn't get any relief from it.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 2/2/2009 12:11 PM (GMT -7)   
Well I had my 4th infusion today, it went well, no reactions.

Went straight into town shopping afterwards for 4 hours and only had to visit the toilet twice. Was feeling pretty well, but could be because I had hydrocortisone as well ;)


I'll keep you updated with how I feel, and if I'm getting any better from it.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 2/2/2009 2:35 PM (GMT -7)   
I had my second infusion on 1/29. Still no change for me unfortunately. Keep me updated on your progress.
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others
Past meds that worked: Cipro, Prednisone
Just stopped Humira 1/1/09
Started Remicade 1/15/09 ... and waiting for it to work

Daily: Folic Acid, Vitamin C, Fergon Iron Supplement, Omega 3, Multi-Vitamin


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 2/2/2009 3:07 PM (GMT -7)   
It took me 3 to 4 time before it worked for me. Been on it for 5 years it doesn't make me 100% well id probably say more like 65% to 70% better. It still better than 0.. My quality of life is still better then before i had it. yeah
Crohns for 13 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 2/4/2009 7:27 PM (GMT -7)   
Have you noticed any change yet Dietcoke?

Glad your quality of life is better now than before the remicade Erik45.

I'm not really seeing any difference yet.

Wondering whether the weakness in my legs is from the steroids or the Remicade now though, after reading one of the links posted on remicade, and don't know whether to bother my doctor with something else, don't want him thinking I'm a hypochondriac or he'll just get bored of me and not want to help me when I really am ill.

My legs went from under me when I stepped down from a chair earlier and I ended up on the floor. I was dusting. Plus they felt like they were going to do it again when I was coming down the stairs. I've had this with the steroids though before, when I've not been on Remicade, so I'm thinking it's probably from them rather than the Remicade. I hope so anyway, although neither is particularly good.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 02, 2016 3:29 PM (GMT -7)
There are a total of 2,731,792 posts in 300,964 threads.
View Active Threads


Who's Online
This forum has 151130 registered members. Please welcome our newest member, Inhisname.
326 Guest(s), 12 Registered Member(s) are currently online.  Details
Purple Tulip, imagardener2, countess18, Skyy, Benjawood, Scaredy Cat, getting by, ChickNorris, exqualls, poohcheez, JayBee1, gilly2


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer