Remicade third infusion

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Tuch
Regular Member


Date Joined Dec 2012
Total Posts : 35
   Posted 1/26/2013 10:03 AM (GMT -6)   
I just got my third infusion with Remicade , still no noticeable results from this stuff.
All the symptoms still hanging out with me. Anyone else have any delayed results from this med?

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 2043
   Posted 1/26/2013 10:10 AM (GMT -6)   
It took me quite a while before I was able to see results. There was immediate improvement like a marked decrease in pain and less blood. But as far as even getting close to normal with solid stool and less inflammation it took a few months. In fact for me it took both remicade and dramatic diet changes for a long period of time to get to a very noticeable difference and eventually full remission.

Hang in there! It is darn frustrating though, I know what it's like to just want to be normal. I'm sure you'll feel much better soon.
Diagnosed Crohns-Colitis about 8 years ago (So i have no idea which board I should post to) Past Meds - Antibiotics, Prednisone, Methotrexate, Remicade

Current Meds - Prednisone 40 mg/Daily taping soon, Just started Immuran (Jan 21, 2012) 50 mg daily for two weeks then 150mg daily

Actually achieved full clinical remission for about 2 years using Remicade, Diet (SCD) and Exercise

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 2043
   Posted 1/26/2013 10:14 AM (GMT -6)   
PS - I was also taking Methotrexate at the same time. So that probably helped with the initial decrease in my symptoms during the earlier stages if remicade. I'm guessing it would have taken me far longer to see a difference without both meds.
Diagnosed Crohns-Colitis about 8 years ago (So i have no idea which board I should post to) Past Meds - Antibiotics, Prednisone, Methotrexate, Remicade

Current Meds - Prednisone 40 mg/Daily taping soon, Just started Immuran (Jan 21, 2012) 50 mg daily for two weeks then 150mg daily

Actually achieved full clinical remission for about 2 years using Remicade, Diet (SCD) and Exercise

Tuch
Regular Member


Date Joined Dec 2012
Total Posts : 35
   Posted 1/26/2013 10:57 AM (GMT -6)   
Thanks Canada Mark,
If you get a minute or two, what kind of diet changes did you cut out?
Thanks again.

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 2043
   Posted 1/26/2013 12:22 PM (GMT -6)   
Well - for me when I first started Remicade I just ate whatever I wanted - So Pizza, and well everything and anything. Although the pain, bleeding and 20-30 trips a day subsided fairly quickly - and cut down to say 2-3 times a day - Things never quite felt right. Loose stool, with mucus being the main issue. So I had to look at other options and that's when I came across the SCD Diet. It was recommended to me by a friend at work.

SO I took the plunge. Essentially it cut's out all grains, starches, dairy (with some cheese's and home made yogurt being an exception) and refined sugars.

There's lot's of resources about it on the web - http://www.breakingtheviciouscycle.info/ being the best starting point.

Now - I must say, that diet on it's own has never been able to keep me out of a flare - but somehow, the combination between diet and med's was like a night and day response for me. Normal stool, once a day, no pain, mucus or bleeding. There's a bazillion people on here that will tell you it helps, and equally as many that will tell you it didn't. Its sort of one of those, you just gotta try, see, and hope things. It's extremely difficult to follow during the first few weeks. Actually, based on others that I've helped get started on it - most don't make it through the first week. Your body does some weird Sh^t at first. I find it funny actually, when I look back now and think about it. There were a few days when I thought I was getting worse - but the main very noticeable difference was zero pain and discomfort when going to the bathroom so I thought to myself, something it different... I'm going to stick through this a little longer and see. Then after a few more days I woke up one morning and well - I didn't need to run to the bathroom first thing. In fact I went out to get a coffee without even thinking to hang around for a bit and "see" if I would need a washroom. From this point on I was sold. And after that everything got better. It had probably been two years since I was able to just get up in the morning and go somewhere... This was a game changer for me.

After a few months on the diet I did some experimenting - and added "illegals" as their referred to - and well within a day the loose stool and mucus returned. So back to being strict I went and that went away again.

Everybody is different though - and everyone experiences different responses to both diet and medications. That's the most frustrating part for all of us on here.

I will say this - The change in diet gave me a new look on life. It caused me to realize just how much crap I was eating, and more so, how much sugar was part of my diet before. When I started to eat healthy, I started to feel better, and then I started to want to exercise, which in turn made me want to just eat even healthier!

I'd say start by reading about it on the link above - then search and read through some of the posts on here as well as any other boards.

Also - I have Crohns-Colitis. So from what I understand from my GI, it's UC but throughout the entire Colon.

My problem was that I had to strop Remicade as eventually I had a reaction to it. I decided to come off all meds cause I figured I was "cured" and I would just continue to eat healthy and exercise... then whamo... after a few years it all came back. So this time around I have learnt my lesson. Diet (SCD/Paleo), exercise and medications is what I am sticking to. Med's - even maintenance dose being the important part to me.

Anyway - it's always a lot to explain.

Have a read through this thread http://www.healingwell.com/community/default.aspx?f=38&m=2624533

It might help answer some of your questions and provide you with some other people you could talk to about it.

All the best and feel free to ask away with any questions you might have after doing your research!

Mark
Diagnosed Crohns-Colitis about 8 years ago (So i have no idea which board I should post to) Past Meds - Antibiotics, Prednisone, Methotrexate, Remicade

Current Meds - Prednisone 40 mg/Daily taping soon, Just started Immuran (Jan 21, 2012) 50 mg daily for two weeks then 150mg daily

Actually achieved full clinical remission for about 2 years using Remicade, Diet (SCD) and Exercise

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 9995
   Posted 1/26/2013 1:04 PM (GMT -6)   
I've read that Remicade works for about 50% of people with UC. I wouldn't let that get you discouraged though, let your GI know what's going on, you may be able to increase the dose. Have you tried a lot of other medications?
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: 6mp (25mg) + Lialda (2400mg) + Canasa (1g PM)

Madcat25
Veteran Member


Date Joined Oct 2012
Total Posts : 1111
   Posted 1/26/2013 1:55 PM (GMT -6)   
What else are you on other than Remi. Luckily for me I saw results immediately, but it could take up to your 5th to see results. It also helps if you are on immunosuppresants, which lessen the chance if your immune system forming antibodies to the Remi.
ASK THE CAT
UC Forum Moderator

Ulcerative Colitis diagnosed Oct 2007. Prednisone for flares until Oct 2012. Half-remission from Remicade.
Currently on: Prednisone 20 mg, Imuran 50 mg, Remicade 300 mg (4 infusions)
Supplements: Ultimate Flora x 1, L-glutamine 1000 mg x 1, VSL #3 x 1

Tuch
Regular Member


Date Joined Dec 2012
Total Posts : 35
   Posted 1/26/2013 2:17 PM (GMT -6)   
I am on 20 mgs of predisone also, Two 800 mgs asacol tablets daily.
The Remicade is every 8 weeks now after the load up dose.
Thanks for your help.

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3063
   Posted 1/26/2013 4:26 PM (GMT -6)   
They say it could take up to five infusions to see an improvement. I went for 8 infusions with no change and stopped it because I was getting worse.
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy with my results of this surgery-got my life back! :)

Tuch
Regular Member


Date Joined Dec 2012
Total Posts : 35
   Posted 1/26/2013 5:37 PM (GMT -6)   
Bye bye UC,
Where did you have the surgery done?

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3063
   Posted 1/26/2013 7:14 PM (GMT -6)   
Tuch said...
Bye bye UC,
Where did you have the surgery done?
I live in central NJ and I had my surgeries done at Jefferson University Hospital in Philadelphia.
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy with my results of this surgery-got my life back! :)

Tuch
Regular Member


Date Joined Dec 2012
Total Posts : 35
   Posted 1/26/2013 8:36 PM (GMT -6)   
Marianne
I'm in Florida, last 12 years I lived 30 miles from Philly.
There are a ton of great hospitals up there.
Not sure of the specialists hospitals in Florida as of yet.
Thanks for your help

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3063
   Posted 1/26/2013 8:52 PM (GMT -6)   
You're welcome. Yes, Philly and NYC have really terrific hospitals. I was really impressed with Jefferson.

I have heard the Mayo clinic there in Jacksonville is top notch. Best of luck with your treatments.
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy with my results of this surgery-got my life back! :)

Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2213
   Posted 1/26/2013 9:02 PM (GMT -6)   
Tuch has your GI considered increasing your dosage or having your infliximab levels tested?

I had three Remicade infusions, the first at 5 mg/kg and the second two at 10 mg/kg, and had no response. I was also on prednisone and methotrexate at the time. Honestly, I think if you don't notice *any* change after three infusions, you are probably a non responder (though you could try a higher dose if you haven't yet -- and I would say that if you are a person who needs a higher dose, it's almost like you haven't had all your loading doses yet). A lot of people say it took more than three infusions for Remicade to work for them, but what they mean is that they didn't see a BIG improvement until later. Most people who are going to respond will see *some* improvement after their first, second, or third infusion.
Liz, 26
http://itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12 w/ moderate-severe inflammation

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

current meds: 10 mg prednisone

step one: colectomy w/ end ileostomy, 1/16/13

Tuch
Regular Member


Date Joined Dec 2012
Total Posts : 35
   Posted 1/27/2013 4:30 AM (GMT -6)   
Thanks for your help all,
I guess first step is to find a new Gastro this week for a second opinion. Time for a change.
Thanks again
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