ahhh starting remicade tomarrow afternoon i need some quick last minute answers

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lalalaCD
Regular Member


Date Joined Jul 2008
Total Posts : 36
   Posted 8/11/2008 7:19 PM (GMT -7)   
hiii everyone!!!! so i start remicade tomarrow afternoon and i am very very very very very very nervous they said they were going to give me some pre med and something else to calm me down has anyone ever had these before?? and is there anything i should know before i go tomarrow like should i eat?? drink a lot of water?? anything i should know at all...and i also know that there are some side effects that could happen after the infusion...is there anything i should know about it when i get home?? like will i feel nauseated at all?? and last but not least should i bring anything there with me?? please share some experiences with me? :) im real upset and nervous :(
 
 
p.s for anyone that lives in n.y have you heard of the dent neurological center?? thats where im getting the infusion
 
 THANKS EVERYONE!!!!
 
         
 
 
 
 
                     Diagnosed Aug 2007 of crohns disease
                     Currently Taking 6mp (soon remicade)
               panic/anxiet attacks...not on meds for them
                               Fistulas make me mad!! lol
                                   


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/11/2008 7:30 PM (GMT -7)   
Hi Lalalacd,

The whole process will take 3 - 4 hours so take books, magazines, laptop, etc. Its a lot of sitting but you can get up to use the bathroom. The only side effect I had was a mild headache. I suggest extra strength tylenol before during and after. I also found being well hydrated helps cut the headache. I brought a light lunch. Something yummy and a treat (extra cookies). I went home and took a nap and relaxed the rest of the day. I suggest you force yourself to rest. The next day I was fine.

As for the pre-meds, yes benadryl and solumedrol are very typical. They help body adjust to the drug. Just sit back and relax. If you start to feel at all unusual, don't hestitate to call the nurse. But the huge majority of people never experience problems. There are people on this forum who have been on it for many years with a problem. And think of the healing it will bring to you! Focus on that and be happy!!! Let us know how it goes.
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  No other symptoms.
Allergic to Remicade and Humira.  Currently on 6MP.
 


29Lancelot
Regular Member


Date Joined Aug 2008
Total Posts : 37
   Posted 8/11/2008 8:32 PM (GMT -7)   
The chances of adverse reaction are very minute and easily handled by staff who have protocols in place. Report any weirdnessess to the nursing staff immediately. Otherwise sit back and relax and perhaps even chat with your neighbour - met a lot of good people while in the lazy boy! As Fall Colors points out, water is good - it will also assist your nurse with getting a nice fat vein on the first try. The first time I received Remicade 10 years ago (also for fistulas), I did so with absolutely no side effects and within a year was in full remission. It was a god send!
 
I've most recently had a need for a 2nd use of Remicade but may have developed antibodies and may have to discontinue the med. FYI...the most typical 'delayed' reactions reported are flu like symptoms or muscle and joint pain - usually between Day 4 and 10 following infusion. They can be easily mitigated by rest and/or over the counter meds. Any such reaction should be reported to your doc right away though and definitely prior to your next infusion. I in fact had this type of reaction on this my second go round with Remicade - most likely for antibody reasons - and although the delayed reaction was not fun, I assure you it was very tolerable in the big picture.
 
All the best!
  • CD dx '86. Re-section '93. Dx Crohn's Colitis '98.
  • Participation in Remicade trials (fistulae) late 90's.
  • Manifestations of fissures, fistula, scleritis, polyarthralgia and erythema nodosum.
  • Presently on Imuran, Cipro, Flagyl and Remicade (2nd attempt - 10 yrs later). Possible serum sickness reaction to Remi after 2nd infusion - awaiting consult.
 


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 8/11/2008 9:44 PM (GMT -7)   
I concure with the above comments. As an add on, make sure you go home and rest afterwards. I am always tired after and can easily sleep 3-4 hours. Keep some tylenol on board for a few days afterwards. it will help with any headaches or aches. besides that, good luck! i actually enjoy going for my infusion. gives me a chance to sit back, chat, read and have someone dote on me!

cheers, you'll do fine
lavender
 
diagnosed: Crohn's Aug 2005
 
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
 
drugs: Imuran, Remicade, Prednisone, Fentanyl, Warfarin, Flagyl, Cipro, Celexa, Ferrous Gluconate, Acidopholous


Aidy
New Member


Date Joined Nov 2003
Total Posts : 16
   Posted 8/11/2008 10:18 PM (GMT -7)   
Wow, I just found out I have to start Remicade for the first time too. I know nothing about it, but am learning fast. it takes 3-4 hours?! yikes!
Good luck to us both.......


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 8/12/2008 2:35 AM (GMT -7)   
I so feel for you and your nervousness! I was so scared for my first infusion. Fast forward two years later, and I've never had a reaction during an infusion. My GI has me take (2) Extra strength Tylenol 1 hour prior to the infusion. I also receive decadron 15 minutes prior to infusion. The infusion itself takes 2 hours, but I am there for 3-4 hours because they have to check you in, do vitals, start IV, etc. Drinking extra fluids is good for you.

You've already received some great advice. The best of luck to you! Let us know how things go. Blessings, Julie
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 8/12/2008 3:57 AM (GMT -7)   
Aye, like the others said, it takes a while, so bring a book or something. Many people get tired after the infusion, so I'd try to get someone to drive for you, snooze in the car on the way home. Plan on a long, quiet day.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


lalalaCD
Regular Member


Date Joined Jul 2008
Total Posts : 36
   Posted 8/12/2008 6:50 AM (GMT -7)   
thank you everyone for their opinions im leaving for it very soon!!!
 
         
 
 
 
 
                     Diagnosed Aug 2007 of crohns disease
                     Currently Taking 6mp (soon remicade)
               panic/anxiet attacks...not on meds for them
                               Fistulas make me mad!! lol
                                   


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 8/12/2008 5:22 PM (GMT -7)   
Good luck! Let us know how everything went.....
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


mmccaus
Regular Member


Date Joined Apr 2008
Total Posts : 20
   Posted 8/23/2008 11:03 PM (GMT -7)   
I'd add that it really only takes 3-4 hours the first time - maybe almost as long the second time. Once they establish that you don't have adverse reactions, the subsequent infusions will be set at a faster drip rate, so my last one (my fourth) only took a total of about 2 hours from start to finish. Hope it went well for you.
M, 44, SF, CA
ulcerative proctitis diagnosed in 1989, active 3 years, but controlled with Sulfasalazine and cortisone enemas
15 year remission off all meds 1992-2007
ulcerative colitis returned May 2007, no remission since
concurrent infections at diagnosis: c-diff, cmv colitis, both treated and negative
meds: asacol, 4-3x/day
started remicade 4/22/08


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 8/24/2008 10:37 AM (GMT -7)   
My doctor's office has a tv with dvd player in the infusion room as well as snacks. I usually bring a movie to watch. As for pre-meds I take a zyrtec the day before, the day of (about an hour before the infusion) and the day after and the nurse gives 2 extra strength tylenol when I get there. There is a great greek restaurant not far from my doctors office so I usually pick up a nice greek salad with chicken and eat lunch during my infusion. Drink a lot of fluids the day before the infusion to allow for nice plump veins. After the loading doses the infusion itself only takes about 2 hours with another half hour to an hour to mix the meds, sign the release, start the iv.
Jodi

Remicade and 6MP


Beloved1952
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 8/25/2008 2:16 AM (GMT -7)   
When I was on Remicade, I went to infusion center at clinic. They made me real comfortable. They gave me Tylenol and Benadryl before the infusion. Generally took about 2 hours. I was in lounge chair with a television. Usually I napped and was able to return to work afterwards. The Remicade put me im remission for about 6 months. It depends on the person, but hang in there. It will be okay.

Beloved1952


david stevens
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/8/2008 6:56 PM (GMT -7)   
I have been on Remicade for 5 years. I take 100mg of benedryl, 50mg of Demerol and 100mg of solumedrol. I atke 700mg of remicade. I always have some type of reaction- usually itching during the infusion.

I have a 30 yr history pf CD with multiple resections.

I try to think of Remicade as my friend not an enemy.
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