remicade question

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Sue T.
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 4/30/2008 9:21 PM (GMT -6)   
I had a colonscopy yesterday and the doc didn't like the results. He said he may want me to start on remicade which I don't think I want to do. But I have a bunch of questions:
How long does each session take?
Do they do it in the doctor's office during doctor's hours? (I have work)
How many sessions does someone need?
How bad are the side affects?
Thanx! 

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/30/2008 9:33 PM (GMT -6)   
Each infusion takes me about three hours from the time I get there until I leave.

Where it's given and the hours depend on your doctor. Some use outpatient surgery centers in hospitals, some use infusion centers. My doctor's practice has its own infusion center and they give appointments between 6:30 AM and 2 PM. I know there are some here who get infusions on Saturday. It just depends on your doctor's accommodations.

Remicade is intended to be a maintenance drug. Usually you get your first infusion, then a second two weeks later, a third four weeks after that. Then the most common schedule is every eight weeks. A few people have had only the three-dose induction program. The problem with that is that if you flare again, the remicade may not work for you or you may have developed antibodies to it so you can't re-start the medication.

The only side effect I've experienced is slight tiredness the rest of the day after my infusion.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 4/30/2008 11:09 PM (GMT -6)   
I've had 1 infusion with a 2nd scheduled next week, i've had no side effect but it's still early. If you insurance will cover it I recommend giving it a shot.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort
40 MG Pred cycle stating 3/26


Sue T.
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 5/1/2008 8:53 PM (GMT -6)   
Thanx for the info. I'm going to the doc on Monday so I have the weekend to decide.

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 5/2/2008 7:48 AM (GMT -6)   
I've had three infusions so far and i am snow starting to feel better!!!

My infusions are just like judilyn said. I go to my docs office...it's about 3 hrs...ususally at 830am or 230 pm...i read, watch tv, talk to the nurses...as for side effects...i am a bit tired after the infusion but that is it.

i'm so used to all the rxs with side effects (imuran, pred) that i have been waiting for a side effect but nothing! so far so good...

goog luck with your decision! Let us know what you decide
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 150mg Imuran, no more pred after two years!!!!
Prontonix once daily for acid reflux, zofran twice daily for nausea
Remicade started 3/1/08...just had 3rd infusion


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/2/2008 7:58 AM (GMT -6)   
Sue, I don't know what kind of work you do, but I've arranged with my manager to take my laptop with me when I go for my infusions and work while the IV's running, so I don't have to use any sick leave. You might see if you can negotiate something similar.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


snickers0506
Regular Member


Date Joined May 2008
Total Posts : 63
   Posted 5/2/2008 9:01 AM (GMT -6)   
When I was diagnosed the second time with Crohns colitis I had remicade at the recommended intervals and went into remission (I think I had a total of 4 treatments) and then My GI doc said to start on 6 mp instead, which I did, and about a year later I stopped all together.  I only had one flare since when I was pregnant and got it under control with 6mp again but stopped taking it once I felt good again before the baby was born.  I haven't taken any meds since.  To make a long story short, I had no side effects from the remicade other than what the other posted said about being tired the day you get it.  I really think it is was kicked me into remission. 

40 yrs young
dx UC Dec 03 then re-dx to Crohns colitis April 04 then re-dx again to UC Dec 07-currently taking no meds and in remission


snickers0506
Regular Member


Date Joined May 2008
Total Posts : 63
   Posted 5/2/2008 9:04 AM (GMT -6)   
Oh and if I remember correctly it took about three hours and I went to the hospital for it for insurance purposes.  I was always scheduled early, maybe around 7am.

40 yrs young
dx UC Dec 03 then re-dx to Crohns colitis April 04 then re-dx again to UC Dec 07-currently taking no meds and in remission


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 5/2/2008 9:38 AM (GMT -6)   
I actually look forward to the downtime when I have my infusion...crazy, eh? I get a nice nap in, the nurses are nice, and the next day I usually have a lot of energy. I've been taking Remi for 3 years now (yeah, can you believe that?) and I haven't had any side effects. I also am given a Tylenol and was taking Benedryl, but switched over to Loratadine (Claritin) instead so I wouldn't be so sleepy when I left the center. My infusions were about 3 1/2 hours when I began and now I'm infused on what's called the fast track, so I'm out of there in about 2 hours max. I always schedule my appts. at the end of the day, but my center is open 7 days a week from 8 am - 9pm, so there is a lot of choices to pick from. All in all, I feel great and keep a busy schedule with work and personal life. Remi has been great for me!
Carol

Remicade - will have my 21st infusion on April 17.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 5/2/2008 9:42 AM (GMT -6)   
I kind look forward to my next one as well. i have spent so much time in the officei n the past two years that everyone knows me and comes in to say hi. Even the scheduler comes in! They make it a nice, comfy environment.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 150mg Imuran, no more pred after two years!!!!
Prontonix once daily for acid reflux, zofran twice daily for nausea
Remicade started 3/1/08...just had 3rd infusion


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 5/2/2008 9:46 AM (GMT -6)   
Yep, same here Kelly; I always feel like I'm walking in to the "Cheers" bar...you know...where everybody knows your name. :-) It is good to have that great support system, and I've met a lot of great people at my center.

Carol

Remicade - will have my 21st infusion on April 17.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


**NiCoLe**
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 5/2/2008 4:37 PM (GMT -6)   
Someone told me that Remicade has been linked to Lymphoma. I know that the risk is small, but it's still scary. When you're on Remicade, you continue to take all of your other meds?
Diagnosed in Jan 2007, but had bowel issues for years

Sulfasalazine - 4 pills 2x a day

Hospitalized for 9 days in Feb 2008 (IV steroid)

Was using VSL #3, but it made me throw up (I'm pregnant and nauseous)

Hydrocortisone and Rowasa enemas when needed (which is usually ALWAYS!)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/2/2008 5:57 PM (GMT -6)   
Recent reviews of the studies showed that people developing lymphoma were all taking Remicade and Imuran at the same time. The risk is still smaller than the average American's risk of being struck by lightning (or so I've read), but some doctors, including mine, have taken Remicade patients off Imuran. Most of us continue taking whatever 5-ASA medication we're on to help maintain the remission and lower the colon cancer risk.

I figure my risk of dying during surgery is higher than my risk of getting lymphoma from Remicade.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


melly-belly
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 5/2/2008 7:14 PM (GMT -6)   
remicade worked well for me for about 2 years. i had immediate results with very few side effects (leg cramps and very hot for a few hours after) the time getting the infusions was well worth the result. its an expensive drug with strange side effects, but if you feel bad enough to warrant its use, then its sure worth a try.
Left-sided UC - diagnosed 2000
"steroid dependant"...stupid!
have been on-asacol, pentasa, rowasa, colozal, prednisone, immuran...yuck! (and others that i can't -or don't want to- remember
just taken off remicade after 2 years...stopped working.
getting ready for the abatacept study group.
first infusion end of april!!!!! yikes!


Winter
Regular Member


Date Joined Sep 2005
Total Posts : 210
   Posted 5/2/2008 7:55 PM (GMT -6)   
I get my infusions at home by a home health agency. It is about $4000 dollars cheaper than that hospital in my area. They will come to your work & give your infusion also. I have no side effects.

Asacol 6 tablets twice daily
Remicade every 8 weeks
Folid Acid daily
Methotrexate 3 times a week
Iron supplements
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 5/3/2008 8:12 AM (GMT -6)   
I asked my Gi about the cancer thing and he said that the risk was soooo small. There have only been like 9 casesof it ever and they were all crohns (not that i think that makes a difference)
He wanted me to stay on imuran for awhile becuase it helps your body not to build the antibodies against remicade. Or something like that.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 150mg Imuran, no more pred after two years!!!!
Prontonix once daily for acid reflux, zofran twice daily for nausea
Remicade started 3/1/08...just had 3rd infusion


Sue T.
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 5/3/2008 9:53 PM (GMT -6)   
Thanx for the responses! I teach kindergarten so I can't get it at work and it's not easy taking off unless it's really important. I still have to decide if I want it. I don't think the doctor will start now. I think he wants to wait for this flair to calm down a bit.

~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 5/5/2008 11:16 PM (GMT -6)   
Remicade has been what's put me in remission!!   I was on track to be lined up for surgery as my next option.  I went from being so sick that I was in the hospital for 6 days talking surgery to complete remission.  Get this,  I"ve even had a stomach bug that I caught from my kids a few times, and would recover in about 24 hours like "normal ,  non-UC people" do.   Having something like that used to ALWAYS put me in a flare.    I enjoy getting my infusions now,  yea, it takes about 3 hours,  but this is nice forced relaxation time.   Can't feel guilty about the relaxation.     I watch some tv,  and/or read,  and/or  play my hand held solitaire game and often take a little nap during it.  (the Benadryl makes me a little sleepy during it.).   I have never had any kind of reaction to the remicade,  just good effects.  I am so thankful for it right now!!   Wish you lots of luck on your decision!!   
                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05. (Currently in complete remission thanks to Remicade!!)
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08, 4/10/08, 6-MP 100mg daily, Pentasa 500mg twice a day, Lantus insulin 20 units daily, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.


**NiCoLe**
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 5/6/2008 5:51 AM (GMT -6)   
ChristieAnne67,
So you're on Pentasa, 6MP and get Remicade infusions? Is that usually how much someone is on or is that just what you need to stay well? Any info is appreciated! Thanks!
Diagnosed in Jan 2007, but had bowel issues for years

Sulfasalazine - 4 pills 2x a day

Hospitalized for 9 days in Feb 2008 (IV steroid)

Was using VSL #3, but it made me throw up (I'm pregnant and nauseous)

Hydrocortisone and Rowasa enemas when needed (which is usually ALWAYS!)

20 weeks pregnant and counting . . . . . .

Prenatal Vitamin and 5 mg Folic Acid

150mg Zantac twice a day (for acid reflux and nausea)

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