How long have you been in REMISSION on Remicade?

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

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/27/2008 6:58 PM (GMT -6)   
As I am miserably flaring again, I am debating options.  The first pred taper for my recent flare has been halted at 10 mg and I am bumping it back up again.  I am on week 4 of 6mp so it might be too soon yet to judge anyway.
 
I have a fairly diseased colon and my doctor has advised me surgery is a pretty good likely hood in the future.  I'm not jumping the gun just yet, but I'd like to avoid it just a bit longer and at least have a clear head and bill of health for a little bit. 
 
For all you remicade users, how long have you been on it and in remission?  I am not sure how long remicade has been out and used in UC, but my concerns with it are long term health and also the fact that its made from a mouse protein which at some point i'd suspect your body would build up an immune response against.   If it is not feasible that remicade could permanently put me in remission, i'd not consider using it. 
 
So, who's on it and how long?   :)
 
Vin
UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/27/2008 7:38 PM (GMT -6)   
On Remicade since March 2006. In remission since April 2006.

Remicade was only approved for UC about three years ago, but has been used for Crohn's longer and for Rheumatoid Artritis for at least ten years.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/27/2008 8:31 PM (GMT -6)   
Wow, 2 + years isn't bad. I know its only recently been approved for UC so there probably isnt any long term studies. My concern is mainly that its using a foreign substance derived from mouse proteins so I just can't imagine your body taking to that forever unless your body is suppressed with like a 6mp or imuran in conjunction. I may be off on my thinking though and open to change in thinking as well :)

Vin
UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/27/2008 8:36 PM (GMT -6)   
Actually, it isn't recommended to take a immunosuppressant at the same time as Remicade. Almost all of the small number of cases of lymphoma that have been reported with Remicade therapy were also on an immunosuppressant.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/27/2008 10:35 PM (GMT -6)   
Yikes. Thanks for the info on that. Very interesting.

Vin
UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/28/2008 6:24 AM (GMT -6)   
hey Vin, nothing to add here but just wanted to say I know how you feel. I just started Remicade, am currently in a bad flare, and am hoping it will kick in even a little bit within the week so I can have some hope and morale again. But I have exactly your concerns. I sort of assume I'll have to have surgery soon enough, am concerned re. long term effects, yet am so fed up with not being in remission that I am game for a break before going through the uniknowns and long recovery of pouch surgery. And who knows, maybe get a bunch of years to keep a colon, you never know. But playing wait and see if it even helps, for now. Good luck. It sure sounds great for many.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since
10 20 17.5 15 12.5 10 mg 8 7.5 20 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade next
 
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 10/28/2008 7:29 AM (GMT -6)   
Hey I've been on Remi for 3+ years; kind of a test case since it hadn't yet been approved for UC. I was so sick at the time but was up for a promotion at work and also had a pretty hectic personal life. I told my doc I really wanted remission, and to resume life, so he asked if I was interested in a new drug called Remicade. I was also looking into doing a study at UC San Francisco for another treatment, but it would have been a blind study so I decided to go with Remicade. It was a great decision and I'm glad I decided to go with it. I've been in remission since the day I started. This isn't to say that I don't have my days, but they are few and far between now. Yesterday I had quite a bout of upper abdomen cramping, but I haven't had anything like that for a couple of years. And no bleeding or anything else. There have been no side effects. But remember, this is my story...some people just don't react as well. Hope this helps.

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/28/2008 7:34 AM (GMT -6)   

Hi Vin- have been on Remicade for about 19 months- first at the 5mgs/kg dose for about 3 months, then at the 10mgs/kg dose since then. I receive infusions every 6 weeeks, & have been at that dosing schedule for about 1 year. I went into a really good, true remission early, but it only lasted thru 2-3 infusions. I developed strep pneumonia, bacteremia, & drug-induced hepatitis after my 2nd infusion, which put me in Intensive Care for 5 days. After that, the following Remicade dose didn't do much at all- not sure if it was due to the interrupted loading dose schedule, or anti-body build-up. So we upped the dose & shortened the dosing time frame & have been doing that ever since. I've been in an ok remission since then- I do get gas, mucous, & have 4-6 formed bm's with major urgency every morning. I have not been on pred since 2/08. I consider myself to be doing ok- I work, go out, eat basically anything I want. I still have some misgivings about being on the drug, especially since I got so sick that one time. But knock on wood, things have been going good since then- no respiratory stuff, no more health issues directly caused by the Remicade. I'd advise anyone to try it. Judy- FYI- Remicade was only FDA approved for rheumatoid arthritis in 2002, so that 10 years of use figure is a little off. It was approved for UC in 2006. That is the only part of the drug that makes me uneasy, the short length of time it's been in use.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/28/2008 7:54 AM (GMT -6)   
Just to add - my last colonoscopy in August of 2007 showed no inflammation at all and the biopsies showed no signs of UC. That doesn't mean I'm cured, just that the Remi has allowed my colon to fully heal.

Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/28/2008 8:08 AM (GMT -6)   
and you know what, a little off topic, but I think you're right Judy- the FDA website has 2002 as an approval date, but Centocor has 1998 for Rheumatoid arthritis! And a date of 2005 for UC! But, whatever the dates are, the fact remains that it's a fairly new drug. I guess it is a roll of the dice- try it & see if it helps, & perhaps suffer some unknown consequence in the future. Or opt for surgery & hopefully live med-free & healthy. Or do neither & stick it out! And for me, my latest scope, done about 6 months ago, showed about 10 inches of active inflammation- so clinically I am not in remission. Symptomatically I'm ok with things. It's so variable, it seems  everyone who is on the drug gets wildly different results.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/28/2008 9:13 AM (GMT -6)   
I've been on Remicade since June and my last cscope in August showed only 4 cm of inflammation, which I've been treating with rectal meds. Although I have no blood, I wouldn't say I'm in remission b/c I still have mucos and my BM's are unpredictable.

I understand your worries. I was doubtful about starting Remicade b/c of all the scary side effects and was thinking that it would be better to just get rid of my colon. But there is uncertainty with surgery as well, so I decided to give Remicade a try. I talked to a GI at the Cleveland Clinic about my worries w/ Remicade and he said that he only gives his patients Remicade for a year and then tries to wean them off on just 5ASAs; if that doesn't work, then go to surgery. I think I'm going to stick with that plan.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/28/2008 9:36 AM (GMT -6)   
Hi everyone. Thanks SO much for all your replies. Bumping up the pred has already seemed to alleviate most of the symptoms. That stuff works so fast and i have some energy back. But now I am feeling loopy from it already. I always say I hate pred, but I think being sick from colitis is worse. lesser of 2 evils.


As far as the remicade... I am still on the fence about it. I was 100% against it, but after looking at what the surgery entails, that seems rather brutal as far as recovery. I kind of see the surgery as tearing down the foundation of a rotted house and starting over... and remicade as 'lets just keep patching it up and hope it doesn't crash down on our heads while we sleep'. Building up a new house is alot more work initally, but it has a much better shot of being a stable foundation in the future.

Ahh, I am not sure. I will discuss with my doctor/family if the 6 mp doesnt kick in during the next few weeks.
Thanks again. This is a great site.

Vin
UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 10/28/2008 11:43 AM (GMT -6)   
9 months and counting for me

Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort
40 MG Pred cycle stating 3/26
Remicade


dmacell
Veteran Member


Date Joined Nov 2005
Total Posts : 1003
   Posted 10/28/2008 3:07 PM (GMT -6)   

I have been on it for 3 years. I have bad days from time to time but it is usually caused by a cold or anything that makes my immune system get out of wack. I made sure to get the flu shot in September this year.



Did I mention how much I enjoy life?
 
Fulminent Ulcerative Colitis
1 Lialda 
multivitamin
Remicade Remission

Post Edited (dmacell) : 10/28/2008 3:11:49 PM (GMT-6)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 10/28/2008 3:11 PM (GMT -6)   
Dano! I was just thinking about you the other day and wondering how you are doing. I remember the days when you started Remi, and thought you must be doing well and out enjoying life! :-) Take care and glad to hear from you!

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


dmacell
Veteran Member


Date Joined Nov 2005
Total Posts : 1003
   Posted 10/28/2008 3:20 PM (GMT -6)   
Hi Carol,

I had my millionth infusion today and was able to help out someone in the remi room. When I saw her it reminded me of how afraid I was when i was first dxn.

The stress of work has caused me some stomach issues and now i need to take a zantac every morning. Also had to up my Lialda, but my Remi is still at 6 weeks.

Still feeling good about helping others but the amount of homeless people really troubles me. We had a bit of snow today and it was really cold and windy.

Its tough to care and not take things home with you. My Doc gave me a real good explanation. He told me that people like us (my doc and me) won't live as long as others who have less cares or worries but our lives will be much richer.

Danno
Did I mention how much I enjoy life?
 
Fulminent Ulcerative Colitis
1 Lialda 
multivitamin
Remicade Remission


heathd
Regular Member


Date Joined Sep 2008
Total Posts : 40
   Posted 10/28/2008 3:32 PM (GMT -6)   
i tried remicade almost 3 years ago and was on it for about 2 years. I had infusions every 6 weeks but dont remember the dosage. It started working almost immediatly for me and i enjoyed a long time of remission. I didnt have any bad side effects from it other than after about a year and a half it started to quite working and in october of 07 i was taken off it. I must warn you that once you start remicade to not quit taking it as your body will build up antibodies to it if you stop taking it. At least thats what i was told. Good luck with whatever choice you decide upon.
diagnosed 2004
Prenisone down to 10 mgs (oct 2008)
Prilosec otc (1 a day)
Sulfasalazine (12 a day)
Flora q (every other day)
Remicade (failed oct 2007)
Humira (started oct 2008)
Multivitamin (1 a day)


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/28/2008 6:40 PM (GMT -6)   
Well I just got back from the doctor. Because I am not progressing as smoothly as he'd like, I am going in for a colonscopy on Friday to determine the extent of the flare and disease. He did say if it looks bad he is going to recommend remicade as a last effort to save my colon. So many decisions are probably coming up...

Thanks everyone. If anyone has anymore thoughts, experiences.. I am all ears :).

Vin
UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


njguy69
Regular Member


Date Joined Jul 2006
Total Posts : 276
   Posted 10/30/2008 4:38 AM (GMT -6)   
two and one-half years and counting.

Asacol - four a day
6 MP - 1 tab. a day
Remicade - every eight weeks.


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 10/30/2008 9:14 AM (GMT -6)   
While I ended up having a reaction to Remicade after infusion #3, I felt AMAZING after the first 2 infusions... on my way to remission I was sure. That experience made it easier for me to say yes to Humira, which worked well for me at a weekly dosage (higher than the regular biweekly dose due to my stubborn disease) for 6 months before that stopped working. Even after it stopped working, a scope showed areas of healing in parts of my colon, so it was obviously helping. After months of progressively worsening flare, surgery ended up to be my choice, as I was just not able to find another solution which would heal me and allow me to kick the evil prednisone. I have no regrets. I would not have been able to peaceably come to terms with surgery had I not exhausted other treatment options first.

It is always frightening to consider side effects, etc of a newer tier of medication treatment, so hang in there. I ultimately decided on surgery vs Tsabri, which was recommended by a consultant, but the side effects scared me.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
Prednisone dependent, now down to 10 mg
2nd of 3 surgeries planned for Jan '09 to form j-pouch


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 11/1/2008 3:41 PM (GMT -6)   
My daughter is going on infusion #3 of Remicade next week. It has been a huge help so far, with no side affects. She is not perfest, but healing and has many more good days than bad.
She has been accepted in a Centicor study for kids with UC. Question: her doc wants to keep her on the 6mp, and said that studies show more effectiveness with the combination rather than Remicade solo. I understand the cancer risks cited, but I hadn't heard the study that suggested it be better given alone(without immusuppressers).
Can anyone point me to it?
Thanks,
Daughter,15 diagnosed 1-08 w/ UC Learning from you all.
Asacol, Prevacid, Flagyl, Prednizone 50mg, major flare, now off!, Hosp. @ U of C, Comers three x this yr. Low residue diet still, and still in a flare.
6MP, Colazol ,horrible acne/moon. No more Pred,but 6mp isn't working. Remicade next up.
Trying probiotics, fish oil, and Mangosteen for kicks.


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 11/2/2008 9:36 AM (GMT -6)   
Phew, I got some good news finally. Dr. said my colon wasn't as bad as we thought after the colonoscopy. He thinks the 6mp may be finally working(and coincidentally my stools, fever, general sick feeling have subsided). His current plan of action is to attempt another taper off prednisone again. Woohoo!! So I can put off the thought of remicade treatments for a while at least. I'll know if I am going to get off pred if I can get past that darned 10 mg barrier I usually hit!

Thanks everyone for the information on remicade. I would have tried if not for the good news colonoscopy on Friday.

Vin
UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 18, 2018 5:55 AM (GMT -6)
There are a total of 2,972,716 posts in 326,008 threads.
View Active Threads


Who's Online
This forum has 160854 registered members. Please welcome our newest member, romanaromana.
339 Guest(s), 2 Registered Member(s) are currently online.  Details
Garion, Szabo246