My First Remicade Infusion treatment

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JohnIII
Regular Member


Date Joined Jul 2009
Total Posts : 28
   Posted 7/30/2009 8:21 PM (GMT -6)   
I will have my first Remicade Infusion treatment in less then 24 hours. I'm scared to death and preying this will work.

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 7/30/2009 8:29 PM (GMT -6)   
i just had mine today for the first time ever. I was SO nervous!!!! So far so good.. no reaction...keeping fingers crossed.

You'll be fine! Just keep thinking positive :)
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 7/30/2009 8:55 PM (GMT -6)   
I am thinking of you. I too was very nervous the first time , but now am an old pro. It worked like a charm, and had no side affects yet for my daughter. Maybe you too will be lucky and get your life back!
Keep us posted.
K
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 7/30/2009 9:23 PM (GMT -6)   
I was a nervous wreck, anxious as heck, but I was basically in remission from it the NEXT day! I had my 4th infusion on Tuesday. They are bumping them to 6 weeks apart because I started flaring last Friday really badly (25 times a day). Well after being sick as a dog all weekend and MOnday, I had the Remicade on Tuesday and was better the next day! If I had any doubts about it, they are all gone. It's a miracle drug for me. I know for sure I'd have surgery without it. I am just hopeful it continues to work and by bumping to 6 weeks prevents flares! This has been one HELL of a year for me.

Good luck!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22
Hospitalized for 3rd time after 2nd Remicade for "opportunistic infection due to suppressed immune system" 5/13 - 5/15

Current Meds: Remicade (3rd infusion 6/8/09), 4th scheduled 7/28/09, Probiotics

Discontinued: Prednisone, 6MP, Colazol (hair loss)


Hopeful4uc
Regular Member


Date Joined Jun 2009
Total Posts : 90
   Posted 7/30/2009 9:51 PM (GMT -6)   
I too was very, very nervous.  I was always checking for any side effects and lucky I just was really tired, a few minor muscle aches.  I do have restless leg syndrome so that got bad, but I have meds for that and just increased the dose for a few days.  I will be going in on my 3rd infusion on August 5th.  My symptoms slowly improved and I finally have some formed stools no blood after 5 1/2 weeks.  However, i did see improvement almost right away for about 1 week then it faded away, but with the 2nd infusion after about 2 weeks....wow such improvement.  My UC is pretty severe so I expected that it would take awhile before i would see some good results.
I wish you luck and hope you see good results very soon with no side effects!!  keep the faith wink
signed, hopeful4UC

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/30/2009 10:37 PM (GMT -6)   
John, I've been on Remi for 3 1/2 years, and it's been a godsend for me. I hope it works as well for you.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 7/30/2009 10:59 PM (GMT -6)   
I had my first Remicade infusion today and I think I've already started to see results! I had a near normal bm tonight!!!!!

I hope it just keeps getting better and I hope no side effects come.. and I hope no reactions happen either!

I did come home and pass out though hahaha.
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 7/31/2009 4:51 AM (GMT -6)   
I hate to be the bearer of bad news but I think you need to hear both good and bad. I had my first Remicaide treatment and it worked really well and I thought it was a miracle drug. The nurses infused it very slowly. A couple months after I had tmy second infusion and had a bad reaction to it. I broke out in hives and my throat swelled which made it hard to breathe. I rang the nurse bell and they immediately infused Benadryl to stop the reaction. I ended up being ok but I think I may have reacted because they infused it faster the second time around or that my body just rejected it. Good luck to you whatever you decide but I just wanted you to know what may happen.

Ashley O
Regular Member


Date Joined Jun 2008
Total Posts : 72
   Posted 7/31/2009 7:45 AM (GMT -6)   
Congratulations on starting Remicade. It was a miracle drug for me while it lasted. I was on it for three years and then out of the blue it just stopped working and I couldn't take it anymore. Now I'm on Lialda and Canasa praying that will be enough otherwise I have to try Humira and if that doesn't work it's back to the dreaded Pred or worse surgery. For now I'm sticking with Lialda and Canasa but sure do miss my Remicade. It was so easy and worked well for the first couple years. Although the last year it slowly became less and less effective and let my disease slowly fester and grow without my knowledge until I had a severe flare and found out through c-scope that my disease is now universal. But don't let that stop you from taking Remicade, it could last much longer for you and I wouldn't trade anything for those two and a half flare free years.

Ashley O
Female, Age 20, DX w/Proctitis UC October 2005
DX w/Pancolitis June 2009
Currently close to Remission. WHOOOO!

Present Meds: Lialda 4 pills every morning and Canasa Suppositories nightly.

As Needed: Immodium, Clonazepam 1mg for anxiety

Past Meds: 40 mg Prednisone Daily 2005-2006, Miralax, Ginger Supplements, Remicade every 8 weeks Aug 2006-June 2009


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 7/31/2009 2:26 PM (GMT -6)   
Nutz said...
I hate to be the bearer of bad news but I think you need to hear both good and bad. I had my first Remicaide treatment and it worked really well and I thought it was a miracle drug. The nurses infused it very slowly. A couple months after I had tmy second infusion and had a bad reaction to it. I broke out in hives and my throat swelled which made it hard to breathe. I rang the nurse bell and they immediately infused Benadryl to stop the reaction. I ended up being ok but I think I may have reacted because they infused it faster the second time around or that my body just rejected it. Good luck to you whatever you decide but I just wanted you to know what may happen.



you had your second one a couple months out???????

i think it's supposed to be sooner than that to build it up..?
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/31/2009 2:30 PM (GMT -6)   
The recommended program is an induction with infusions at 0, 2 and 6 weeks, followed by every 8 weeks.

Like all medications, Remicade can have side effects for some people, and some are simply allergic to one or more components of the drug. And like most UC treatments, it helps some and not others.

Hope it will help you.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 7/31/2009 3:44 PM (GMT -6)   
weird, i wasnt nervous at all my first time, probably cause i was young and didnt do my research, i still dont really know whats scary...i did have a reaction once, just started to get some hives on my back, but they just gave some benadryl in my iv and i took a nice nap and they slowed down the flow...no biggie..i love my remicade appts, i cant wait to start again!
24 year old male, uc since I was 17
remicade for two years, worked great but got married and was told it could cause birth defects so I quit feb 08.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 10 mg pred
 
starting back on remicade to see if i can get some relief next week, considering j-pouch surgery this year, any tips would be great!

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