Your remicade experience

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fidsandfrats
Regular Member


Date Joined Aug 2009
Total Posts : 32
   Posted 8/20/2009 3:53 PM (GMT -6)   

Hello Everyone,

I am new to this board. 

My husband is 57 and was diagnosed with UC 3 years ago.  After several failed medications his doctor recommended Remicade.  I am scared to death about him starting this treatment.  Some of the side effects are scary!  I love my husband and want him to feel better but I don't want him getting a side effect that is life threatening. 

Is there anyone here that can share their remicade experience?  I'd like to know how you feel after your treatments?  Do you feel good and do you have energy or are you really, really tired?  Do you get depressed?  Does your body ache?  Anything you can share with me would appreciate.  He is to begin his treatment next week and I am just beside myself. 

Thank you,

karen


Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 8/20/2009 4:44 PM (GMT -6)   
I just had my second Remicade treatment yesterday. I seem to feel very flu-like the day after and tired. It went away after the first treatment so I am hoping it does this time. I have still seen no effects on stopping the flare up for my UC. I have had two treatments and nothing has changed. I am getting really worried. Most people said they felt good after the first. I am feeling really sad.
 
39 yrs old ( diagnosed UC 2002)
Ankylosing Spondylitis (diagnosed 1990)
Asthma/Allergies
-----------------------------------
Asacol 12 daily
Zoloft 50mg
Multivitamin
Flaxseed Oil capsules
Rowasa
Remicade
Boniva (Osteopenia spine)
Hydrochlorothiazide 12.5mg (hypertension)
Prednisone 40mg
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 8/20/2009 5:46 PM (GMT -6)   
The side-effects seem scary, and scared me to death, but they are fairly rare. I have been on Remicade for more than two years and for the last year every six weeks. I have had no ill effects at all, the infusions aren't at all unpleasant, but do be prepared for a few hours in the chair getting the infusion. Have him bring a book, crossword puzzle, mp3 player, what he likes to keep busy with.

The Remicade healed up my colon very well, but I cannot seem to clear the last few centimeters of inflammation in my rectum, which causing me to experience some symptoms, especially once I get into my fourth or fifth week from my last infusion. But it gained me some time, during which I mentally prepared to face the j-pouch surgery, which I am going for this winter. The Remicade will help keep my symptoms manageable until I am ready for surgery.

I would say to go for it, it has helped quite a lot of people on the board here. Most bad effects happen pretty immediately and he'll be in a hospital setting during the infusions, so if anything should go wrong, he's in the right place.

I was a Nervous Nelly for my first infusion and dragged my daughter, then !7, along to keep me company. Big mistake, the infusion clinic isn't really set up for a guest and while I had a nice big comfy chair she was stuck on a hard little stool for more than three hours. She was very good-natured about it, but it was such a non-event compared to all the disaster scenarios I had cooked up for myself I really wished I had just gone on my own.

Hope it works for him!!

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed). Having surgery in January 2010.

17 Remicade infusions (6 weeks sched: 1st: 7/21/07; most recent: 7/18/09; Current meds & supplements: Lialda, 4 tabs in the morning; Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Roweasa; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro; Xanax


fidsandfrats
Regular Member


Date Joined Aug 2009
Total Posts : 32
   Posted 8/20/2009 6:19 PM (GMT -6)   
Boxermom2

Thanks for your reply.

I have read that it may take weeks or months before the remicade starts to work so dont' be worried just yet. Give it some time. Think positive. The success rate is supposed to be very good. Good luck to you

fidsandfrats
Regular Member


Date Joined Aug 2009
Total Posts : 32
   Posted 8/20/2009 6:24 PM (GMT -6)   
Meesh

Thanks for your reply. I am glad to hear that you had no side effects. Hopefully, my husband won't either. I'm sorry that the remicade isn't clearing all your inflamation. I wish you all the best with your surgery this winter.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/21/2009 7:57 PM (GMT -6)   
I love Remicade! No side effects, worked immediately. Put me in remission for the first time and I don't care if I die 10 years sooner because I have such a better quality of life with Remicade. Please let him decide whether it is worth the risk, since he is the one having to deal with the UC and it sucks.
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/22/2009 11:52 AM (GMT -6)   
I've been on Remicade for four years now. I've had no side effects and it's totally given me my life back! I was dx'd at 45. My doc took me through most of the first line meds pretty quickly since I wanted to try the Remicade. I'm so glad I did. I'm now in remission, and just got my colonoscopy pathology report back from my doc; left mucosal, right mucosal, transverse mucosal, rectal mucosal...no active active colitis or dysplasia. So, his theory was right and now the docs are looking at using the big guns first, and then scaling back after trying to heal the colon. I know that everyone reacts differently to meds, and you and your husband have a right to choose whatever angle fits your needs best. Take care, hoped this helped...and welcome to HealingWell!
Carol

Remicade - will have my 30th infusion on September 2 
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 

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