Crohn's Disease Forum » Treatment » Remicade/Infliximab » Undecided about remicade

02-03-2015, 10:43 PM   #1
Join Date: Feb 2015
Location: British Columbia
Undecided about remicade

Hi all, was diagnosed in 1983, terrible pains for serveral years
Had 2 children after my 2nd child in 1987 my bowels burst.
Had resection done they removed 1' intestine, was then in remission until
Sept of 2013 had major blockage another resection done.
Specialist now wants me to try remicade
Can anyone tell me they're experince with remicade either good or bad
Also if remicade helped with ache's and pains which I have throughout my
whole body, I'm so undecided if I should try this medication.

Crohns since 1983 😒

Last edited by Pipersgram; 02-05-2015 at 12:15 AM.
02-04-2015, 12:09 AM   #2
Forum Monitor
Clash's Avatar
My son was on remicade for some time. He had a 180 degree turnaround after the first dose. Literally, went back to feeling like a normal teen. He also help with his IBD related joint pain, co-dx of juvenile spondyloarthropath(which came later).

Unfortunately as his CD was severe it was unable to eliminate the simmering inflammation and we opted for a resection. He will start humira soon.

Remicade has been a great maintenance drug for many. I'm sure others will be by with their experience.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-04-2015, 12:16 AM   #3
Super Moderator
afidz's Avatar
Join Date: Jun 2012
Location: Mckinney, Texas

My Support Groups:
I didn't realize how much pain I was in on a daily basis until I went on Remicade and started to feel better. I was taking 12-15 advil a day, not sleeping through the night, back pain, joint pain, gut pains, the whole 9 yards. I don't need to take naps during the day. I am not hiding inside in my jammies. I look forward to leaving my house everyday.
I haven't been able to work in 3 years
I am in the process of looking for a job.
Remicade has changed my life.
Everyone has different results so try not to feed into other peoples experiences, good or bad because the last thing you want to do is go into it with the wrong expectations. I hope that you find the comfort and relief that you are looking for, we all deserve better than the lifestyles that IBD gives us.
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Asacol HD
02-05-2015, 12:31 AM   #4
Join Date: Feb 2015
Location: British Columbia
Thanks for the replies
I've been having all the tests done, don't see specialist until April
My body aches so bad at times argg!!!! I'm hopeing that remicade will help with
my aches and pains!.. Don't have any cramping

Acid reflex meds
02-05-2015, 10:54 AM   #5
Forum Monitor
Join Date: Nov 2012
Location: El paso, Texas

My Support Groups:
Welcome. My daughter has been on remicade for more than two years and she is doing great. Are you pains at the joints? If your pains are a result of inflammation you may find that they will go away once your inflammation is under control. It will be a good idea to visit a Rheumatologist.
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
02-05-2015, 09:58 PM   #6
Join Date: Feb 2015
Location: British Columbia
Thanks araceli
Yes it's mostly in my joints I find that my shoulders and left hip ache sooo
bad, was told by my specialist not to take Advil as it's hard on my intestines
And was taking lots throughout the day, I now take Tylenol or Tylenol 3's
for the pain which doesn't really help either so I just suffer though the pain.
The pain is so bad it wakes me during the night just throbbing arggg!!!
So when I do get on remicade I'm sure hoping it helps!
Was on prednisone in sept oct of 2013 as I had blockage,which sure helped with my aching body and boy!!! Did I ever have energy but had to taper off arggg!
I loved that drug!
02-05-2015, 11:24 PM   #7
Senior Member
FrozenGirl's Avatar
Like afidz I didn't realize how much better it could be until I started Remicade. It had made me much more able to function and actually enjoy life.
Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
02-06-2015, 10:30 AM   #8
ChicagoMom's Avatar
Join Date: May 2014
Location: Chicago, Illinois
My daughter has been on Remicade since October and so far we've had a great experience with it. She tells me all the time that she didn't realize how sick she'd really been feeling until the Remicade kicked in and now she feels a million times better. I'm so grateful for Remicade and hope that she can stay on it for a long, long time.
*R*~mom of *L*~age 14-diagnosed with CD 5/14

Currently taking:
Remicade 10mg/kg
Methotrexate 15mg/week
NG-tube at night

Past meds:
6-mp--discontinued 9/14 because it caused bone marrow suppression
02-06-2015, 05:20 PM   #9
LNS87's Avatar
I've been on Remicade for about a year now, and it has been a wonder drug! I had about 5 months of flaring before i got my first dose, and i felt better the first night! Like others have said, i didn't realize how bad I had been feeling until the remicade was making me feel good again. I do get extremely tired the day or and the day following my infusions, but i will take that over feeling bad all the time!
Dx with UC (pancolitis) in March 2012

Currently on Remicade as of Feb 2014
Last Scope: Dec 2013, showed mild/moderate active UC
Previous Meds: Prednisone, Canasa, 6mp, Lialda, Asacol HD
03-22-2015, 07:58 PM   #10
Join Date: Feb 2015
Pipersgram, I'll be starting remicade soon, just got all my clearances worked out. My History is in my signature, only had crohns a short time, but fistulas are driving towards remicade. I was also undecided but all indications I get are telling me the fistulas will not heal without it, my surgeon won't do a flap with existing crohns without remicade humira useage, she tells me the inflammation will not allow the flap to heal and it will be unsuccessful. Just sharing my thoughts and why I decided to go on remicade, hopefully no side effects
03-22-2015, 09:24 PM   #11
Senior Member
SCCrohnie's Avatar
Join Date: Mar 2014
Location: Fort Mill, South Carolina

My Support Groups:
Crohn's since about 1987 here.

I was on Remicade for seven years. It was a miracle drug for me after they moved the dose up. I ate anything I wanted and had little-to-no pain. Put on about 40 pounds over that time too!
03-23-2015, 10:14 PM   #12
Forum Monitor
dave13's Avatar
Join Date: Dec 2013
Location: Maine

My Support Groups:
I started July last year. I am now on the maintenance schedule. Helped me feel normal again,in my opinion. Fatigue is the lingering by product that seems to affect me. The fistulas are responding and setons are moving so I am happy. Feel free to contact me with specific questions.
"It does not do to dwell on dreams and forget to live."

Crohn's Disease Forum » Treatment » Remicade/Infliximab » Undecided about remicade
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