First Remi tomorrow

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kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 2/27/2008 4:35 PM (GMT -6)   
Tomorrow I start remicade. I am excited and scared. I have horrible veins!!! Everytime I have had an IV my veins have collapsed. i was told that i would have one infusion tomorrow then one in two weeks then another a few weeks after that. Has that been others experience? Can you feel the remicade going through your veins? Is it going to make me woosy or lightheaded? I'm planning on bringing a book and my ipod. My husband wants to go but i told him that i plan on reading so he'd be on his own for entertainment.

Any experiences would be great. Just nervous about the first time. hee hee...
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 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 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/27/2008 4:45 PM (GMT -6)   

Good luck to you!  Just had my 15th today.  It's actually pretty relaxing.  I also have difficult veins that collapse - but usually I have no problem with the Remicade.  I do them in the docs office so the anesthesiologist comes to start my drip.  Try to drink plenty of water today and tomorrow morning so that your veins are easier to find and keep open.  0, 2 and 6 weeks is the pretty standard start up for remicade - and after it is usually around every 8 weeks give or take.  I actually have my hubby come with me and we watch a movie together or something.  It usually takes about 2 hours or so from start to finish.  You'll be fine!

Let us know how it goes tomorrow.  GOOD LUCK!!!


KTM


PaloPalo78
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 2/27/2008 5:04 PM (GMT -6)   
Hi there
 
good luck with the first infusion
 
i had my first only a few days ago and im now waiting for the letter /date for the next one.
 
I was in hospital having mine and it was late at night when they started it , but i fell asleep during it , the nurse said they also gave me some anti-allergy drugs in the drip too . this might make you feel a little drowsy. I doubt if you can feel it going in , maybe a slight change of temp on your arm as the fluid mixes with your blood . slightly cool feeling etc
 
the effects were so quick though , i went from 2 weeks of bloody diarrhea to no BM for a day and a half !  .. then when i did finally go , all was perfect !
 
im very much looking forward to the next dose and wish you well on it too
 
 

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/27/2008 5:08 PM (GMT -6)   
good luck! You won't feel a thing, it's actually boring. I bring a book along. I suppose the Benadryl can make you a little dorwsy, but the Remicade itself will be a breeze. They put it in a vein in my forearm, so I don't know if your veins are bad there, but it should be ok.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/27/2008 5:47 PM (GMT -6)   
We just recently had a conversation going here about how we look forward to our infusions. The staff where you go likely start multiple IV's every day and are very good at it. I have "wiggly" veins and some people have a problem starting IV's on me, but those nurses have never had to stick me twice.

My center gives Zyrtec because fewer people get drowsy from it, and tylenol to help prevent a fever. And your doctor is doing it right. The recommended induction protocol is first infusion, second two weeks later, then a third four weeks after that. Once you're through that, it's usually every 8 weeks. I hope you have as much success with it as I have had.
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


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/27/2008 5:52 PM (GMT -6)   
good luck with it, I am so happy for you! And that is the schedule I would have had, had I gone through w/the remicade. For me by the time I was to start remicade I got a lot better so I decided to hold off on it.
Beth, 32
Major Flare Sept/Oct 07 ~ no blood since Dec 07 ~ almost normal bm
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday.  Potassium 100mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 2/27/2008 6:12 PM (GMT -6)   
They're pretty boring but grab a book, some magazines and a snack and you'll be set. Mine used to take about 4 hours (I was 16 at the time so it might have had to do with that). After my 2nd one I got a funky reaction to it so I was put on benedryl before, but I think they do that anyways so you might even dose off.
I hope it turns out to be you "miracle drug"
Good luck chica :)
Sam
19 years old
Diagnosed March 2005
Remission since January/April 2006 (incident with mono)
3200mg Asacol, 25mg Amitriptlyine, Ortho Tri-cyclen lo, Imodium when I need it
"If you don't like something, change it. If you can't change it, change your attitude"
Maya Angelou


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 2/27/2008 6:13 PM (GMT -6)   

Good luck with the remicade infusion! 

Hope it does the trick for you and from the responses so far it seems like a smooth procedure (unlike some of the other procedures we have to go through!)....And, PaloPalo great to hear that it's worked so soon for you.


Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone taper from 60mg - Now on alternate days of 20mg and 10mg; 2/08: added 1 Pentasa x 1mg.

Post Edited (Rio in Maryland) : 2/27/2008 4:16:36 PM (GMT-7)


ChuckUC2002
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/27/2008 6:28 PM (GMT -6)   

Dear KB5.  This is my first time posting so I hope it this message is helpful.  The Remicade regimen you mentioned sounds right.  I had my first Remicade infusion on February 1, 2008, my second on February 15, 2008 and my third is scheduled for March 14, 2008.  After that I will be receiving infusions every 8 weeks.  The infusion is painless.  You will be bored out of your mind for about 3 hours and possibly tired from the allergy medicine (usually Benadryl) that they give you prophylactically for potential allergies.  If your husband does not go with you, you should definitely have him escort you home because you may be drowsy.

I was diagnosed with UC in December 2002.  Since then, I had about 5 flare ups, all of which were quickly controlled by Prednisone except for my last flare up which began late December 2007.  For some reason I did not respond to 50 mg Prednisone, so my doctor started me on 6 MP.  However, the 6 MP takes a couple of months to work, and my colitis was out of control, hence the beginning of Remicade.

With respect to the efficacy of Remicade, I found that I got a little worse before I got better so don't lose faith if you do not see immediate results.  Some people, however, see immediate results.  A large factor in your responsiveness to Remicade will be the severity of your current colitis flare up.  My colitis was pretty severe and effected various patches of my colon with lots of pain requiring lots of Codeine.  Therefore, it was not until about a week after my second infusion that I started seeing drastic results, down from 10 bowel movements a day to 2.

I truly hope Remicade works for you.

------

Diagnosed with UC in December 2002 at age 28.

Current Meds:

Remicade, Prednisone 30 mg and tapering down, 6MP (mercaptopurine) 75 mg, Cannasa suppository once a day, Colocort enema once at night, Asacol 12 pills a day, Probiotics (Nature's Way Primadophilus Bifidus one pill twice a day on an empty stomach and MegaFlora Probiotic Formula one pill twice a day on an empty stomach), Olive Leaf Extract, Slippery Elm.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 2/27/2008 7:35 PM (GMT -6)   
Thank you all for the replies! Having you all here makes this much easier.

It's nice to know from the patient perspective what things are gonna be like. My fahter in law is a pharmacist who makes iv drugs and as much as he knows about remicade...he's never been on it.

Chuck, welcome! Thanks for sharing your story. Right now I'm actually not flaring horribly. I have been in this flare for about 18 months, last year this time being the worst of it. Now I'm having 6bms, no blood, moderate to severe constant pain and cramping,and severe nausea. Nothing has worked and I have been on pred the entire time, hopefully remi will help me finally be rid of the pred!!! '

I'm nervous but excited, i'll let you all know how it goes. Thanks!!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 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 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 2/28/2008 2:07 AM (GMT -6)   
Hi Kelly...I can certainly understand you feeling both nervous and excited...I truly hope this is a treatment that will get you feeling well quickly.

Looking forward to your update.
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 2/28/2008 10:35 AM (GMT -6)   
Kelly,

I had Remicade at NW Gastro too so I know exactly what you'll get! I always felt cold in the room. We think it was because that room always felt cold and I think they have fixed that as of late. But, I also thought maybe I was cold because of the IV running into me. Sometimes I had to go to the bathroom in the middle so don't be afraid to ask if you have to go. They hook you up and slowly like every 15 min they increase the rate. There's a TV in the room. Sometimes you're by yourself but sometimes other people are in there. The nurses that run Remicade are all awesome. I always enjoyed coming in to see them. Let me konw how it goes... good luck!

Becky
29 years old; diagnosed since 1997 (but I've had it forever)
Current meds:
-Prednisone 7.5 mg!
-Re-trying Imuran; I'm at 100 mg now...but it's making me so tired!
-Asacol 12/day
-Failed Remicade (8/06-8/07)
-Calcium + Vitamin D(for my steroid-affected bones)
-Prenatal vitamins (for the extra stuff, not for pregnancy)
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 2/28/2008 6:09 PM (GMT -6)   
Yeah! I got my infusion! I was much calmer than i thought i would be becuase of all of you. The nurse was impressed at what I knew and I told her all about you all. Thanks so much! I have my second infusion the day before we leave for vacation (to celebrate my 30th! another woo hoo!). I now join those who look forward to infusions.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 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 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/28/2008 10:43 PM (GMT -6)   
good luck. i hope it goes well!
Pharmacy Student, Class of 2009.  Diagnosed 8/99.  Suffered for almost 10 years.  I am currently on the Specific Carbohydrate Diet and am nearing remission.  I feel fantastic!    I have lost so many years to this disease.  I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.  My goal is to open up a pharmacy and take care of my patients(particularly explaining what the drugs do to you), compound special medications, and have a great practice. HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!
Meds 3200 mg Asacol, 2.5 mg Prednisone


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/29/2008 9:21 AM (GMT -6)   

I'm so glad it went well for you.  Hope this kicks you into remission before you leave on your vacation!

Happy 30th!!!


KTM


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 2/29/2008 4:32 PM (GMT -6)   
Great news Kelly! Hey, I've had several infusions the day before I've gone on vacation or travel and never had any problems; and as I've mentioned, it sometimes gives me an extra boost! :-) Glad you were relaxed and things went well for you. Take care and let us know how it's working for you. ps....good job Kelly! :-)
Carol

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


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 2/29/2008 6:18 PM (GMT -6)   
Glad it went well for you.Hope you get that remission real soon.
Good luck
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       
            http://www.myspace.com/martybuzz1<FONT]

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