long-term Remicade users

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

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/20/2009 12:10 PM (GMT -6)   
hi everyone- so it dawned on me that I've been on Remicade for 2 years now & am still nowhere near remission- I had an accident the other day! I've been on the higher dose for about a year & a half. Is anyone else in a similar situation? I know plenty of people call Remicade their "miracle drug"- if you're one of 'em, did you go right into remission after 2-3 infusions, & stay there? Has anyone been on Remciide for 2+ years & not achieved remission? Last time I met with my GI we talked about Humira- I'm afraid to try it, because it's last-ditch- if it doesn't work, I have to have surgery. At least while I'm on the Remicade, I can still say "well, I can always try Humira!". I don't know if I ought to bother sticking with Remicade- it helps, but I wonder if it's enough to justify the risks. I'm so close to just saying "Screw these meds" & calling the surgeon again. I really am. Would you guys stick with it, until it loses all effectiveness? I had my last infusion about 3 weeks ago- have been pretty bad the past week or so. Usually they do last longer, the infusion effects.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 3/20/2009 12:18 PM (GMT -6)   
How often do you get Remicade infusions? I started on Remicade in Aug '08. I only reached full remission for a couple of weeks in October - but then I was stupid and enjoyed some wine two weekends in a row, and that flared me up again. I haven't been fully in remission since. And for the past few infusions I've passed blood for the last few weeks before my Remicade appt.

Before chaging the frequency of my infusions, my dr incrased from 5mg/kg to 7.5mg/kg. So now we still have the option of increasing the dose as well as increasing my frequency. I am feeling better this time around. I still pass blood once in a while, but nothing terrible yet. And I still go to the bathroom several times a day with great urgency. But I'm maintaining my healthy weight and I am functioning fine. Even my dr said that I may not lose all of my symptoms, but as long as we can keep them in check and stop any bleeding, then that can be seen as success.

I think if I maxed out on the dose and frequency though and still had major problems, I would consider a new drug (Humira maybe) or even surgery.
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg, increased in March to 7.5mg/kg (started Aug 2008 - 6 infusions so far, next infusion on 4/30 continuing every 8 weeks); Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (currently taking one daily, will increase to two soon)
Current Status: Reached remission for a few weeks in October 2008, but symptoms returned after I allowed myself to enjoy wine again.... gave up wine and have not been in full remission again yet. 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/20/2009 12:22 PM (GMT -6)   
I am maxed out on the dose & frequency- 10mgs/kg every 6 weeks. I've heard you can go as often as every 4 weeks, but my GI hasn't brought it up! That much med in that short a time freaks me out anyway.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 3/20/2009 12:51 PM (GMT -6)   
I do the highest dose every 4 weeks and I am okay right now but not perfect- I can still work and that is what is important to me right now.
Jessica 27/F
Remicade
Entorcort 9ml
Lialda 2.4GM
Citalopram 20 MG
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle, dicyclomine)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/20/2009 1:16 PM (GMT -6)   
now how long can you maintain on that dosing schedule though? I can't imagine it'd be indefinitely... I work too, and still go out & about, I just wish my symptoms were more under control, considering the amount of med I take. Do you handle the Remicade well? I have gotten sick right after infusions in the past, but having been doing ok for a while now.

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


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/20/2009 1:35 PM (GMT -6)   
Have you tried adding enemas or suppositories to your routine?  That is what helped me achieve remission when I first started Remicade.
Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 348
   Posted 3/20/2009 2:10 PM (GMT -6)   
What are your symptoms? Pain, diarrhea, loose stools, blood? I might have to go on remicade as well because Entocort and Asacol are not working. I go to the bathroom maybe 1 time a day though. So, maybe the Asacol does help.
26m - Dx January 2005: UC/Crohn's
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 3/20/2009 2:45 PM (GMT -6)   
I just had my third infusion yesterday and I'm definitely not in remission, though I had been feeling better. No blood or anything... But three days before my appointment I felt really sick; I thought it was because I ate some Reese's cups before bed and nothing else on Monday. Tuesday I felt really nauseous but couldn't go to the bathroom. Wednesday had a few bathroom trips but nothing too bad. Yesterday everything was COMPLETELY liquid- and urgent. But not the painful kind of urgent, just the "I'm okay... OMG GET TO THE BATHROOM NOW" and almost not making it kind of thing. Today it's a little bit less liquid but there is some blood. And it's a yellowish color with a bubbly oily film on the water?? Soo weird.
I'm hoping I start feeling better again but I have no idea what's going on. Still hoping that Remicade is my "miracle drug" too but not getting my hopes too high.

Anyway, if I were on Remicade for that long and it wasn't working, I would probably start thinking surgery, yes. I think I would probably give Humira a try only because I'm a procrastinator and am still a little scared of surgery, but I think you will know when you've had enough.
Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
3rd Remicade infusion 3/19/09


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/20/2009 2:47 PM (GMT -6)   
my symptoms are extreme urgency, blood, mucous- I have formed stools, & I go about 4-6 times a day. Most days- there is the odd day that I wind up going 12 times or so! Which sucks. I mean, it's not so bad that I can't do things, but I'd like to be better than I am, considering. I have used rectal meds in the past- Rowasa & steroid enemas, but have not used either in a long time. I have none left, & may ask my GI about getting more when I see him in a few months. I hate them though! But I can do them. I don't want to have to do them- you'd think being on the big gun meds would be enough...!!!!!

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


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/20/2009 2:52 PM (GMT -6)   
I would try alternative treatments, such as fecal transplantation, Probiotics, vitamins, diet, stress management, change in living environment (such as moving to a warmer climate)... before resorting to surgery. And if these didn't work, then yes I would get surgery. It would be a really hard decision to make, because I might find something that worked and put me in remission just like that. And, therefore, I wouldn't have needed the surgery. But long-term use of any of the Colitis medications isn't good for the body. In many cases, the medicines do more harm than having the colon taken out.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/20/2009 2:58 PM (GMT -6)   
well, I can't move anywhere right now, & the only alternative treatment I haven't tried is fecal transplantation. Which honestly, I'll never do- I don't have an acceptable donor, nor do I feel like trying to get the labs done to test the donor's stuff. I just don't believe enough to give it a go. Hey ediekristen, are you doing better since your infusion? I wonder if you'll find yourself becoming symptomatic in the week or so prior to your next infusion. How's the tattoo? I've had a lot of very liquidy urgent bm's the past few days too- you wonder if it's the "seasonal flare" factor.

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


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 3/20/2009 3:16 PM (GMT -6)   
I only get a few weeks of effect from Remi before it turns off like a light switch.... so my dose is going to be upped to the 10 mg/kg the next infusion. Been on it 5 months now. I am being told that if Remicade fails even at the higher dose we will probably try Humira and some other biologic but I am not keen to try any more of this garbage. Right now my philosophy is to buy myself time to try a few other last ditch things to avoid the knife- eg fecal infusions. Getting my girlfriend's stool and blood tests set up- around $1000 worth- and if she shows up clean enough, I will be getting intimate in a new way (sharing her feces) and see if that does the trick! I am no longer as afraid of surgery as I used to be but am still determined to try every last thing before I "destroy the village in order to save it."


Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Currently Remicade and lots of probiotics, tapering pred again, maybe surgery this year
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/20/2009 6:22 PM (GMT -6)   
that's how I feel, probiotic- not keen on jumping from biologic to biologic! Plus, my GI said that when you lose effectiveness with one, the others don't generally do much. You may buy yourself a bit more time, but it's not likely you'll find your miracle drug! I have tried many alternative therapies, plus supplementation... it's no different than buying time with meds, trying to buy time with alternative therapies. You do reach a point where enough is enough- I suppose it's good to not fear surgery anymore- I think I can safely say all of us have feared, or still do fear, surgery. Personally, I'm glad to be past that- it would be a relief, of sorts. I fear losing health insurance too- especially in this economy. You gotta figure, ostomy supplies are a heckuva lot less than the biologics & the 5ASA's. And everyone who has one seems to have a gigantic stockpile, from hospitals, & suppliers who send you tons of samples & stuff. Plus, ostomy supplies are covered, mostly in full, under basically every insurance plan. Hhhmmm.... why do I feel like I'm leaning that-a-way?!?! I'll be curious to hear how the fecal transplant goes for you.

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


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/20/2009 6:40 PM (GMT -6)   
It has kept me in a solid remission since about a month after starting it. But you have to remember, like most of the treatments for UC, it's not effective for everyone. I think the manufacturer says that you will likely reach maximum benefit by the fifth infusion; if it isn't working by then, it's time to consider other alternatives.

Part of the problem is that right now, with Humira not yet approved and so many insurances not covering it, Remicade is about the final option. A lot of people prefer to continue with it rather than go to surgery if the Remi is helping at all.
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.


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 3/20/2009 6:52 PM (GMT -6)   
Eva Lou said...
 Hey ediekristen, are you doing better since your infusion? I wonder if you'll find yourself becoming symptomatic in the week or so prior to your next infusion. How's the tattoo? I've had a lot of very liquidy urgent bm's the past few days too- you wonder if it's the "seasonal flare" factor.

It seems like it's gotten a tad better, I was feeling really run down and achey yesterday and today I feel okay. Still having liquid stools but not as much and it's a little less water, more like regular diarrhea. Before, it seriously looked like I had taken an enema. I've also been getting off and on really bad burning/gnawing pain, but it feels like it's more in my stomach than in my intestines. I'm hoping you're right and maybe it's just a seasonal or passing thing...
The tattoo is healing up nicely :) It's entering the itchy phase though, and itching on the top of the foot where you can't readily get to it is NOT fun!! Ahhh. But it's beautiful, I love it :)

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
3rd Remicade infusion 3/19/09


LEM617
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/20/2009 10:44 PM (GMT -6)   
Eva Lou, perhaps you should start planning a time frame for this surgery if you are leaning that way. Would your employer give you the time, if so when?, is there some thing you need to get done before you put yourself out of circulation for an extended period of time as you rcover, from what I understand it is a 2 step process tha could take a year. How about the fact that the longer you wait, the longer you are exposed to these toxic drugs, and there is the age factor for healing. Lastly, what affect will this have on your support system, the people who would help you.
Just my thoughts, as I have contemplated this for my daughter wo was diagnosed 1 year ago. Rami seems to be working for now. But how does one know that you are in remission? with a colonoscopy? I get the part where you stopped having symptoms, but if you are taking medicine how do you know that you can stop? Anyway, good luck in youe future.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/21/2009 6:33 AM (GMT -6)   
I have thought about time frames for surgery- I would not get a jpouch, but rather, a perm ileostomy, so that is a pretty simple one step surgery. Barring any weird complications. I would most likely do it over the summer, as my daughter is out of school then. My employer is a non-profit health clinic, & would definitely give me the time off- I had planned on surgery a year ago & had time off all set, then cancelled it. But the thing is, I keep saying "We'll see how the summer goes..." thinking, if i'm stuck at home another summer, then surgery is a definite. Not being able to go to the beach, or parties, or whatever. So I guess it'd most likely be in the Fall, or over the holidays. Whatever... I try not to think about it too much, really- if it comes to that, I'll just go & do it. I'm jealous of your new tattoo, ediekristen- I haven't gotten a new one in about a year. I feel like crap myself- have a head cold. But for the first time in ages, it's not respiratory- JUST a head cold! Which thrills me.... rolleyes
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 10:19 PM (GMT -6)
There are a total of 3,004,494 posts in 329,146 threads.
View Active Threads


Who's Online
This forum has 161741 registered members. Please welcome our newest member, Vicky1953.
206 Guest(s), 6 Registered Member(s) are currently online.  Details
PDL17, Girlie, 61Impala, Chutz, (Seashell), VirginiaGal