Remicade - What made you start taking it?

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Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/10/2008 10:38 AM (GMT -6)   
I was in remission for a short while (6 months maybe?) then I got thrown into a flare last October due to a surgery I had.  So then I had to start back on Colocort.  I did fine for about a month or two then I started seeing blood again.  Now I'm flaring again, major bleeding this time - could've been due to me catching this virus thing.  But I'm beginning to see a pattern here.  It seems that when I start a new medication, it works wonderful for anywhere to 6 months to a few years and then it seems to stop working.  My 6mp has already been increased twice because according to the Prometheus test, I was at the low end of the sublevel (I wish I knew what that meant).  I vary between 50 mgs and 100mgs.  At what point do you decide to start Remicade? What prompted you? What were your symptoms?  Did you bring it up to your GI or did they?  I'm tired of seeing blood in the toilet which is my main symptom at the moment (sometimes D but not often).  In this latest flare, I was sort of disappointed to see all that blood again - and it wasn't light red, but dark so I'm assuming that the inflammation has spread higher into my colon again.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
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Pessimist
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 1/10/2008 10:54 AM (GMT -6)   

I am probably developing quite a reputation as being anti-Remicade, so I might not have much credibility on the subject, but anyway……

 

I was very reluctant to start Remicade.  It was at my doctor’s urging.  He brought it up and he kept suggesting it (after my options were exhausted with the 5-ASA meds).  My symptoms were never that bad during all of this, but he seemed very uncomfortable with me not being on some kind of medication and he knew I did not want to remain on Prednisone.  According to him, Remicade was my last option.  I actually asked him if I had other options and he responded (somewhat rudely), “We can remove your colon.”

 

I don’t think I’ve had the Prometheus test.  What’s that?


M-39, UC Diagnosed June 2007

Other stuff:  Migraines/headaches, high blood pressure, essential tremor

Previous Meds: Colazol (caused pancreatitis), antibiotics, Prednisone (several cycles 20mg/day)

Current Meds: Remicade beginning in Oct ‘07, various vitamins, Imitrex, Lortab, Lisinopril


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 1/10/2008 11:00 AM (GMT -6)   
well for me, I had been flaring for about a year & a half, & had done a couple courses of pred during that time- the first course worked ok, tapered down, started becoming symptomatic again. 2nd course did absolutely nothing... I was very ill, lots of blood, lots of D, losing lots of weight. My GI did a sigmoidoscpy to check out how things looked, just prior to beginng Remicade. We both brought it up, really- it was basically the last option, as I had been on Asacol, Rowasa enemas, steroid enemas, Imuran, & pred at one time or another. The first infusion was like am iracle, the 2nd one put me in the hospital with strep pneumonia, drug induced hepatitis, heart murmurs. BAD news. But I did go back on it- after careful consideration/discussion with my GI, we gave it another try. The 3rd infusion worked ok, nothing great- I became symptomatic within 3 weeks. Then the surgery talks started- went thru all of the pre-ops, had appt. for surgery scheduled in November '07. As a last ditch effort, my GI & I upped the remicade dose- again, worked wonders the first time, & has been slowly working less & less since then. I've had 2 infusions every 7 weeks at the higher dose so far- am flaring now, mildly, mostly bleeding in the AM's, then am "ok" the rest of the day, up a couple times during the night most nights.  My next infusion is in 11 days- am hoping this will kick me back into "remission", & then schedule the infusions every 6 weeks. I gotta admit I'm discouraged- have been thinking lately "Gee, maybe I should have gone thru with the surgery.... I'd be fine by now....". BUT- saying all that, Remicade has given me the most symptom free times in my life since I was diagnosed- I say go for it! Yeah, the side effects are scary, but..... we're living now, you know? The possible complications from secondary infections are what freak me out the most- considering the fact that we're immune suppressed as it is, Remicade increases your chances of getting a nasty infection.. I still worry every infusion I'm going to wind up back in the hospital!

hey pessimist- why exactly are you anti-Remicade? Is it not helping you? And have you tried the immune suppressants, Imuran/6MP, etc? I'm not anti-Remicade, but I don't think it's the wonder drug science thought it would be. If it doesn't help, surgery is really the only other option, in terms of a "cure".

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 10mgs/day
 

Post Edited (Eva Lou) : 1/10/2008 9:08:37 AM (GMT-7)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/10/2008 11:17 AM (GMT -6)   
I had tried pretty much everything out there, except 6mp and Imuran, and was not getting better.  I have been up and down with my UC for the past 12 years, mostly down, but had kinda gotten used to it.  I refuse to take Prednisone.  (just took it for severe joint pain but I was DESPERATE) Anyways, I was ok with Asacol and whatever enemas and things and being sick, I didn't want to take Remicade.  But, the sigmoidoscopy showed my ulcer was 1 inch deep, close to preforating.  My GI said Remicade or surgery.  I tried Remicade.  It helped close the ulcer from 1 inch to 1/4 inch in 3 months, even though I was still flaring.  After over a year on it, my symtoms finally were improving.  Then, it started not working so great anymore and I tried a higher dose, then had reactions.  I took it about 3 years and never had any bad infections, actually was hardly ever sick with colds, never had any side effects till now.  I became a lot more cautious about germs and am a Purell fanatic and maybe that helped.  Now looking back, I wish I wouldn't have been so worried about the Remicade, it wasn't that big of a deal.  But, also I wish I would have just had surgery 4 years ago and had been done with all this.  It's just so final.  And such a big surgery and I have little kids.  Thanks for letting me share that!  Btw, I had a colonoscopy in Nov. and that same ulcer is 1/4 inch still, UGH!

Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/10/2008 11:33 AM (GMT -6)   
Thanks for the insights. Actually I'm not afraid to start Remicade if I have to. I think I got over that kind of fear when I started 6mp. I'm just so tired of these symptoms and not being able to control it properly even though I'm doing everything I'm supposed to be doing. I go see my GI in 3 months so if I'm still flaring by then, I might bring it up to him and see what he says.

Pessimist, a Prometheus test is a blood test they send to a lab in California that tells you different things. It depends on what they are testing for. But it's basically to check to see if you are a candidate for immune suppressors such as Imuran or 6mp. Then they have the metabolites test to see if you are metabolizing the drug properly. As far as I know, they only use this test for Imuran or 6mp - not sure if they use it for other types of immune suppressors.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/10/2008 12:30 PM (GMT -6)   
Well, I have to say that Remicade has been wonderful for me. I was so sick I could hardly get off the toilet. I was up for a promotion, and was scared that I'd lose my job. I couldn't even function at home, I had stopped going most places and had gained weight from the Pred. I was downright miserable, and I hoped that the Remi would be the answer. It was, and I'm thankful for it. I've had no blood since I've started the Remi, and only a few minor blips. As for the health issues, I've really not had the flu or cold any more than others in my office.

Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


Pessimist
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 1/10/2008 12:52 PM (GMT -6)   

I dislike Remicade for several reasons.  In general, I think it is poison.  I think it is very unsafe for short term and long term health.  I think that it produces many side effects that the doctors and the manufacturer deny.  In my case, the 6 week headache was particularly unpleasant.  I am also very frustrated with being terrified of a 3 year old with sniffles.  I can no longer interact with my family and friends effectively because I am so scared of catching any sickness they might have.  In addition, as I’ve said in other threads, I do not know if it is even helping me.  My symptoms have not changed at all after 3 infusions.  I’m fortunate enough to have very mild symptoms right now, so taking such a serious med seems like overkill in my situation. 

 

My doctor said that I cannot take the 6MP drugs because they can also cause pancreatitis. 

 

Thanks for the info on Prometheus. 


M-39, UC Diagnosed June 2007

Other stuff:  Migraines/headaches, high blood pressure, essential tremor

Previous Meds: Colazol (caused pancreatitis), antibiotics, Prednisone (several cycles 20mg/day)

Current Meds: Remicade beginning in Oct ‘07, various vitamins, Imitrex, Lortab, Lisinopril


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/10/2008 5:42 PM (GMT -6)   
a couple responses to different people who posted:

Pessimist - promethus is a blood test used to help GIs figure how to dose people on 6-MP or Imuran. traditionally, imuran por 6-MP would be tried before Remicade.

as for anyone wondering why someone might be anti-remicade... I am not anti-remicade, at all. but I am someone who would potentially elect for surgery over remicade, so I guess I am someone who is personally uncomfortable with the idea of remicade. why? a few reasons:
1. remicade, as a biologic, is a significantly more potent drug that 6-MP or Imuran. it is a life saver for some, but because it is a biologic, it has potential isuues not associated with standard immune-modulators. for me, personally, as someone who is very risk averse, I am more comfortable (at least in theory) not having a colon than those potential risks.
2. remicade is in its first generation of use. personally, not comfortable with that.
3. we want to get pregnant in the next year and can't if on remicade
4. it is unknown how long an individual can safely remain on remicade, so for some people the drug buys them a few more years with their colon but they lose the organ ultimately anyway, so why postpone the inevitable

so, that's my personal feelings, but I say that not having had to make the decision. it may be that I think I'd prefer surgery until faced with that, and then would actually opt for remicade instead. in any case, I think it is a great drug for the people that benefit from it, and I am thankful that we all have it as an option. but it is just that - an option - and I think that there are some people like myself who just see the cost/benefit calculation of remicade vs. surgery a bit differently. I gues, the longer I have UC, the more I think my colon may be overrated, and I am just not sure how far I'll go to keep it, if it comes to that.

anyway, I am glad you guys have been able to benefit from the drug. for sure.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/10/2008 6:54 PM (GMT -6)   
I had been in flare for 5 years, ever since my diagnosis. A combination of Colazal, Imuran and Entocort had cut my bathroom trips from 25-30 a day to 12-15. I was still bleeding a lot, having pain, and so exhausted all the time I was on the point of having to quit working and go on disability. I also was getting some very nasty side effects from steroids which made me desparate to get off them before they killed me. My choice was Remicade or surgery. I chose Remi because I prefer to try all of the medical solutions before I consider surgical solutions to my health problems.

Now I go 2-4 times a day (usually 2 recently), have no bleeding, no pain, no exhaustion. I have had one cold in the past two years and no other infections. My husband has had several colds and I never caught them. I work with preschool age children. I think my darn immune system is invincible, nothing suppresses it very much!


Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 

Post Edited (Judilyn) : 1/10/2008 4:59:05 PM (GMT-7)


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/10/2008 8:29 PM (GMT -6)   
This is a good discussion! I always want to know what the next step will be if this step doesn't work out. For me, if Imuran doesn't work, Remi is the next step. For some reason, I like to over think and over analyze things. My propensity to plan six months in advance drives my hubby nuts!!! I've been working on curbing that desire :-D

I'm still on the fence about Remi vs Humira vs surgery. So, I'm always looking for great discussions like this - where people are free to express their view either way - and give reasons to back them up :) Knowledge is power!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/10/2008 9:47 PM (GMT -6)   
The craziest thing is that I never gave it much thought; and Remi hadn't even been approved for UC -- only for Crohns and RA so there wasn't much info on it about UC. I think I was so sick at the time and no other meds were working I just figured what the heck. At my age everyone is on something or has some sort of issue, but it was rough because I had never taken anything more than aspirin before I was dx'd with UC. I was always considered the healthy one! So at 46 I get UC -- go figure. At this point, I'm thankful that UC is all I really have; the rest of me is in check....well, for now!
Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 1/10/2008 10:21 PM (GMT -6)   
I started Remicade because I absolutely despised prednisone and would do just about anything to get off it. I don't think I'm a vain person but I could not stand the weight gain and my moon face was absolutely the worst. I looked more like a cartoon character than a human when I was on prednisone. My GI was the one who brought up Remicade. It is working well for me and I feel like I'm back to "normal."
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade remission


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/11/2008 7:07 AM (GMT -6)   
Hmm It seems we have mixed reviews on this. But many of you already answered my questions as to why you started it in the first place. If it comes to where I have to be on Remi and if that fails me too - then at least I can say I've tried everything. Because even though I would like to have surgery and be done with this whole Uc thing, part of me always wants to know that I've fought as hard as I could and tried everything there was to try before throwing in the towel.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 

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