On to remicade

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

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 2/13/2008 7:00 PM (GMT -6)   
So after being in a flare for a year and a half my GI wants me to go on remicade. I must say I thought I was prepared for this but emotionally I am having a hard time. I know this is the next logical step but I am jsut scared of the new I suppose. I've been on imuran since august and my symptoms have gotten worse. I can't seem to get below 10mg of pred. Enemas stopped being affective awhile ago. The pain in the butt now is waiting. He upped my imuran one last time for a last ditch effort while we get all the paperwork together. Oh and tests! i didn't realize. I have to have a tb test, chest exray and three blood tests! The nice thing is though that they are doing all the legwork with insurance and such.

I am just having a hard time with the idea that this is the last thing we try before surgery. I have tried homeopathic and diet changes with no success. Scared and stressed about the whole situation. Being in constant pain until the paperwork goes through is also on my mind. I feel like my brain can't stop thinking of worst case scenarios now. Hopefully it will snow tomorrow. Snow always cheers me up.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/13/2008 7:34 PM (GMT -6)   
I went through similar emotions before Remicade, I think it's normal. Once I started it, I got really used to it and even looked forward to it (especially after I started feeling so good on it). It will be ok. Oh, and I thought it would be the last thing for me before surgery. But now I am starting Humira. And there is hope that Orencia might be approved for us. So, in the meantime, think of how great Remicade is going to work for you and keep in mind there may be more options if you need to stop Remicade eventually, hopefully not.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 2/13/2008 7:58 PM (GMT -6)   
I don't think I worried quite as much, it probably will work and nothing is easier to get used than FEELING GOOD!!!
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/13/2008 8:16 PM (GMT -6)   
I haven't been on remicade, but in terms of being in pain while waiting for this to go through, maybe you could up the pred dose to carry you over until the remi kicks in??

as for fears of remi, for what it is worth, I have now had 2 conservative GIs tell me that while they initially had concerns about the drug, they have really become believers in it over the last few years. also, even though it has only been used in UCers for about 5 years, it has apparently been being used in RA patients since the mid-late 1990s, so they do have data from people who have been on it almost 12 years, and they are doing well.....

good luck and try to be relaxed. as james said, you can probably adjust to feeling better!
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/13/2008 11:37 PM (GMT -6)   
I'm quite fond of my Remi, actually. In addition to making me feel much better, I get to relax in a nice comfy recliner for a few hours and read or nap, whatever I want. It's a very soothing atmosphere for me.
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


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 2/14/2008 12:11 AM (GMT -6)   
Although I'm on Abatacept rather then Remicade, I was in the same boat as you. I had been in a serious flare for over 18 months, was on stupid doses of Prednisone, was at my max dose of 6-MP etc etc. Had tried probiotics, diet changes, bla bla bla. Nothing worked.

Then the abatacept kicked in and I have been able to get off the prednisone completely and each month the flare seems to reduce bit by bit.

The biologics (the overall name for these medications) do seem to work. There is quite a bit of risk attached to all the medications we have to use. Remicade is no different, so don't worry about what you can't change. I really hope it works as well for you as for many many other people I know!

The idea of being un-chained from the bathroom is rather attractive no? :-)
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 1x6-MP twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xteaspoon of Metamucil smooth powder 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day;
    - 3xGarlic Oil caps 2 times a day, 5mL Olive Leaf Extract 2 times a day.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 2/14/2008 8:29 AM (GMT -6)   
Thanks all. I am getting used to the idea of remicade. My Gi won't up my pred (i don't much want him to either) since I have become so steroid dependent. I have a call in for pain meds, which i have never needed before. I hate asking for them at all but i just can't stand it. I am looking forward to getting back to "normal" and my husband is being so great about all my fears. I feel that i need to add to the thread about who we need to get through the hard times...i forgot to add all of you. Thanks.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 2/14/2008 4:26 PM (GMT -6)   
I was also nervous about going on Remicade, but I have been on it since July and it seems to be working. I did have to increase the frequency to every six weeks, but I am finally starting to have some success tapering my Prednisone. I usually start to have trouble when I hit 15 mg, but so far so good. The real test will be when I get down to 10 or 5 mg, but by then I'll be ready for another infusion.

Be sure to bring a good book or perhaps an iPod or other device to help pass the time. I have a Zune and enjoy watching or listening to podcasts during the infusion. I also nap. I try to book an appointment early in the day, I stop by Einstein Bagels and pick up a breakfast to eat while I am in the chair (the infusion clinic offers food if you're there at mealtime, but it's icky).

My husband wanted to accompany me, and I finally let him once, but really, there was no place for him to be really, I had a nice comfy recliner, he was in this hard little chair for pushing three hours, I felt like I had to talk and entertain him -- but I gather he was curious/concerned. I do enjoy the time alone, no phone ringing, no one wanting anything from me ... it's a nice little break and I get to feel a whole lot better!!

So far I haven't had any illnesses or infections except a cold/sinus thing that lasted longer than it should have, but it didn't land me in the hospital or even a doctor's office. I have had side-effects to several of the drugs we tried for the UC, so I was apprehensive, but I tolerate it very well.

Good luck and keep us posted!!

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)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/14/2008 11:34 PM (GMT -6)   
Kelly, be sure to hydrate yourself well the day before your infusion. Makes the IV easier and the nurses tell me you're less likely to have a reaction. I hope it works as well for you as it has for me.
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

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, April 25, 2018 3:50 PM (GMT -6)
There are a total of 2,955,628 posts in 324,239 threads.
View Active Threads


Who's Online
This forum has 162237 registered members. Please welcome our newest member, nealzy.
399 Guest(s), 10 Registered Member(s) are currently online.  Details
goshawk, LifeCurves, Miner76913, BabsBunny, Missouri, KYLEb23, raypaul, 4meows, Old Mike, RunJerRun