Has Anyone tried Remicade??

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Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 2/19/2008 8:23 AM (GMT -6)   
Hi All,

My father is having ulcerative colitis for last 5 years.Most of the time he is on various doses of prednisolonse with mesacol,azathioprine and anemas.

He was diagnosed with psuedopolyps earlier in 2007 which was subsequently removed by the doctor.

But few days back he again underwent a sigmo in which were found a severe inflammation and many psuedopolyps.Reports of biopsies have not yet come but doctors had doubted for dysplasia.

We are really tensed and confused as to what to do now?

I came to know about remicade(infliximab) injections from internet.
Can someone please guide me about this medication or share with me the experience of being treated with remicade.
As researches say that remicade may have servere sideeffects,I want to know more about the practical experiences of people undergoing this disease.

Please help!!

Appreciate a reply!!

Thanks

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/19/2008 8:55 AM (GMT -6)   
Rytm09, welcome to HealingWell. Remicade is one of a fairly new class of drugs called biologicals. In addition to Remicade, it includes Humira, Abatacept and others.

I've been on Remicade for two years, after being in various states of flaring for the five years since my diagnosis. I'm now in remission, and have been since about a month after starting the Remicade. I go every 8 weeks to my doctor's infusion center where I relax or work on my laptop for three hours while the drug infuses through an IV. Usually the remainder of that day and maybe the next I'm a little tired, but I've had no other reactions to the drug.

I haven't had problems with increased infections at all, nor did I when taking Azathioprine. I do get a TB skin test each year because that's my doctor's protocol for Remi. Since I've started Remi, I've had one cold. No other infections or problems. I do make sure to keep any cuts and scrapes clean, and I wash my hands often to prevent infecting myself with colds, flu, etc.

One of the big concerns for me when starting Remicade was the slight increase in the incidence of certain types of cancer which had been seen in people taking it over time. Since then, research has shown that the risk is primarily associated with taking Remicade and Azathioprine at the same time. After this research was published, my doctor took me off Azathioprine. And remember, it's a very slight increase in your chance of getting a pretty rare form of cancer. So the odds are pretty much in your favor.

A little over two years ago, I was taking Colazal, Azathioprine and Entocort and Imodium, and was still very sick. Today I take Colazal and Remicade and I have my life back. For me, it's been great. To be fair, though, there have been others in this forum for whom in hasn't worked or it did cause an allergic reaction. If you do a search for remicade on this site, you'll find multiple threads discussing it.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 2/19/2008 4:21 PM (GMT -6)   
I've had good experiences with Remicade as well, but I need to go for infusions every six weeks rather than every eight weeks. I am now tapering from Prednisone, this time it seems successfully as I have gotten past the point where I usually experience problems.

I read on here that many people are tired after their infusions but that has never been a problem for me. Since I was diagnosed I do find I need s full eight hours sleep and usually an hour nap in the afternoon, but the infusion doesn't make me MORE tired. Luckily I am self-employed so I can indulge my need for sleep.

I have finally achieved remission with Remicade and it's been a godsend for me. The infusion experience is not unpleasant; the nurses at the hospital infusion clinic where I go are very nice and experts with the needles (totally painless) and I don't mind the few hours of quite time with a good book or my Zune to listen to/watch videos on. I like being in a place where no one is bugging me and I have to turn off my cell phone!!

Meesh
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, starting yet another taper attempt, down to 15 mg daily. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums
12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran (2/07)


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 2/19/2008 9:33 PM (GMT -6)   
I have had UC for almost 14 years.  Right now my flare is so bad I can barely ride in a car.  Prednisone and Asacol are not working.  I am going to try some new probiotics but am doubtful.  I am interested in Remicade - at first I was afraid of it, but I am thinking of moving in that direction - However I have a question to you experienced Remicade users - My wife and I are trying to get pregnant.  Does Remicade effect male fertility?  I recently (6 months ago) had a pituitary tumor removed and all my levels are back to normal - we are hoping my fertility factory starts up again - but the last think I want is to wreck it with Remicade....  I suppose I can google it too but I wanted to see if any of you experienced users have any input.

Thanks  scool
33 yr old male. UC for 13 years. 40mg pred, 12mg Asacol, Fish oil pills, Garden of Life probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland.


Ambrosia
New Member


Date Joined Feb 2008
Total Posts : 13
   Posted 2/21/2008 11:45 AM (GMT -6)   
Hi mbx5 - i am not an expert on this ... but Tuesday i asked my doctor about remicade and getting pregnant as my husband and I are thinking of trying to have a baby. It will be different for you as you are male and I am female .. but i do not believe that Remicade itself will have any negative effect.

That said, I am on Remicade ... had 5 infusions so far ... and i'm not stabalized yet - still having symptoms, etc. Remicade has helped but it is taking time to figure out the right dose. I go every 4 weeks right now and had an allergic reaction last time (Tuesday). I'm a bit tired after the infusion and the next day ... but other than that it hasn't been bad. It has made life easier - though i'm still having problems .... just a bit less frequently. Hoping to get to remission but my hopes aren't SUPER high as my case is pretty bad.

Ask your doc about this if you are curious. I would recommend Remicade based on my experiences. Its not so bad. :)
33 year old female - diagnosed with UC 7 years ago. Misdiagnosed since i was 19.
 
Current treatment:
Colazal 3 tablets 3x/day
Remicade
 
In the past I have tried Rowasa (no response), and have been on Prednisone for up to a year at a time. I have been flaring for over a year and started Remicade in October, 2007.


eliztopp
Regular Member


Date Joined Feb 2008
Total Posts : 46
   Posted 2/21/2008 12:00 PM (GMT -6)   
MXB05
I talked to my doctor about Remicade last week, and although I am not in a place to be thinking about becoming pregnant it is still a concern. My doctor told me that it does not have a nedative effect, but again i am a women so it may be diffrent for males. But he did also tell me that he likes to put pregnant women on Remicade becuause it has shown no negative effect on the child and the mother is still reciving her treatment. (he did also say that some women just prefer not to be on any medication while pregnant and that is a discussion that he has individualy and depending on factors) So that sounds promising! I hope that it works out! and good luck to you!
 
{[lizzielu]}
age 20, diagnosed december 2006
meds: Asacol 4 pills 3x a day; 6-mp 75mg MWF, 50mg SSTTH; iron supplament; protonix; prednisone 25mg for one more week! (in the middle of a tapper, down from 40mg started 1/1/08)
Remicade????--pondering, next step


PaloPalo78
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 2/21/2008 4:00 PM (GMT -6)   
Hi
 
Im currently on a NHS waiting list for my first infusion of remicade / Infliximab and was wondering how quickly it turns things around
 
Im currently on 40mg prednisolone and asacol and cant eat anything except a few slices of bread a day
 
do you think i will be able to eat normally soon after the first infusion or will it take a few infusions and months to get back to normal eating ?
 
what results have people had please ?

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 2/21/2008 4:12 PM (GMT -6)   
I felt better within a few days of my first infusion, although the nurse had told me some people don't feel better until their second or third, and others on the board here mentioned no improvement till around their fifth. I start to get sympsoms again at 5-6 weeks so I am on a six week schedule now.

I am surprised that you haven't seen an improvement on the Prednisone. As hard as that drug is to take, what with all the side-effects, it usually works wonders very quickly for just about everyone, and increases your appetite something fierce. When I am in a bad flare my GI sometimes gets me up to 60 mg for a week or two -- maybe you should call you dr?
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, starting yet another taper attempt, down to 15 mg daily. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums
12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran (2/07)


PaloPalo78
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 2/21/2008 4:55 PM (GMT -6)   
Hi
 
Its been a nightmare  .. just as you have said about prednisolone
 
normally a few days at 15mg-20mg would sort me out and then i would spend 6 weeks tapering off it , but this time it hasnt touched it - or has kept it settled at a huge low for me .
 
40mg is quite high for my weight and age so the dr was concerned about it , i have started aziathiprine but that hasnt kicked in yet so im hoping remicade will push it along and let me eat normally and see some difference
 
nice to know that some people see change after the first infusion though ! - gives me great hope
 
thankyou

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/21/2008 5:00 PM (GMT -6)   
remicade is helpful to many here and has put them into remission.
Pharmacy Student
Class of 2009, MWU

I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.

 

3200 mg Asacol


HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!


Ineedaremedy
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 2/21/2008 5:26 PM (GMT -6)   
I just finished my FIFTH colonoscopy over the course of about 15 years. I have been diagnosed with IBS, Chrones (when i went for my next colonscopy the second doctor told me the first one was wrong and thats not what it was) an inflamed colon, from a heavy night of drinking "Red Deaths"   devil when i was in my twenties (that was my FIRST colonoscopy)...Every single time i ever had this procedure it was due to me Shi**ing blood for weeks to a month. I am so tired of having to be subjected to this invasive and humiliating procedure ESPECIALLY because there is not a single Doctor who has ever been able to tell me WHY I AM GETTING THIS and WHAT I CAN DO TO PREVENT IT FROM HAPPENING AGAIN.  mad  I SUBJECT MYSELF TO IT CAUSE I CONSTANTLY THINK I HAVE COLON CANCER and HAVE NO CHOICE BUT TO SPEND THE MONEY FOR MY OWN PEACE OF MIND.
 am not one to blindly take medications with no real remedy to solve the underlying problem.
My latest Col. procedure the Doctor told me nothing except.. "It just happens to some people". (oh REALLY EINSTEIN???!!!) HE DIDNT EVEN TELL ME WHAT I HAD!!! (sorry Im mad-heh)
So i looked up Canasa on line (which is the medication he gave me to TREAT /bandaid it) and as far as i was able to tell through my SELF diagnosis.. I have Ulcerative proctitis, as i have all the symptoms of this.
So i researched a bit more and found a site that mentioned that for some reason unknown to the medical industry, certain peoples immune systems detect feces as a foreign antibody in the system and attacks it as though it were trying to kill a GERM or a BACTERIA or a VIRUS in the body much like it would do if you were ill. What happens is that a person with this conditions body will release an over load of white blood cells into the walls of the colon in order to KILL the "foreigner"... in the end, the colon is overloaded with WBC's which in turn causes constipation, and inflammation of the colon walls. The streaming in of WBC's Alone causes bleeding of the colon walls .
Ok.. so that was the MOST of what i got. still No remedy . Until today.
I have some HOPE again and am about to investigate this MUCH further.
A friend of my mothers called today. When i told her about what was going on with me.. she sarcastically asked me.. "And? did they TELL YOU WHY YOU HAVE THIS? did they tell you HOW TO CURE IT??" and i said no to both.
She vehinemently believes with all her heart (and gave me examples of people she knew) that i have living in me a PARASITE. An intestinal parasite which is probably laying eggs within my colon. But medical doctors do not test for these when they do stool and urine samples. She said the way to kill parasites (which can be contracted from tiny bacteria from a single person in lets say a restaurant, like a food handler, or tap water, or many times from foreign countries BUT NOT NECESSARILY) is with NATURAL REMEDIES.. like clove or something along those lines. Of course that was a hypathetical remedy so dont everyone go out and start taking clove.
Reading about the WBC's last week and the attack on the feces... makes sense with the parasite possibility. Because perhaps it is detecting the PARASITE.. and not the feces at all!!! and my body IS IN FACT working properly by attempting to illiminate the foreign body from my colon.
(Before anyone says anything i am NOT trying to say that FOREIGNERS are linked to FECIES IN ANY WAY!!! You gotta be soooo careful nowadays not to offend anyone. lol)
Anyway, I talked to her for a very long time. She is extremely involved in the natural remedy and holistic scene.. but not against Doctors.
I just know for myself, i am so sick of hearing from Doctors who are SUPPOSED TO BE CURING ME.. that there is no cure and "here take THIS PILL or this SuPPOSITORY (for the rest of my life) and see you next year when the bleeding starts again so we can prescribe something else for you".
does anyone feel the way i do about not having a remedy, solution or cure for what they are dealing with? I didnt read very many of these posts but from what i read it seems like everyone is kinda like, accepting of the fact that they're sick and willing to keep medicating without really knowing why they are.
Well, for right now I believe the Parasite thing. I saw a whole program on this and i am definetly going to get checked. The problem is I have no insurance and am very worried about how much NATURAL remedies are going to run me. NOT THAT INSURANCE WOULD COVER IT ANYHOW.
But my health is more important than this medical beuracracy.
HELL THESE DOCTORS ARENT THE ONES STICKING A SUPPOSITORY UP THEIR BUNG HOLE EVERY NIGHT I AM!!!
what do you think? anyone? (not about my bung hole about the parasite theory) And did anyone ever hear of this before???

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/21/2008 5:40 PM (GMT -6)   
MXB05-

After a quick search, the available information seems to be that there isn't much information about Remicade and fertility as yet. However, I did find one study that showed it may be helpful in reversing infertility in some men with IBD. Here's the link if you want to read the article:

http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijge/vol3n1/infertility.xml

Ineedaremedy, there is a cure for UC. It is total colectomy, usually with a j-pouch reanastamosis to hook things back up again so you don't have to wear a bag. There are some intestinal parasites, such as hookworm, that can cause anemia and slight bleeding, but not of the sort you get with UC. And doctors aren't resposible for curing you or making you better. They can recommend treatment, which you either follow or not. Ultimately, we're all resposible for our own lives and health and attitude.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum

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