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Crohn's Disease Forum » Treatment » Remicade/Infliximab » The goodness of Remicade


12-07-2011, 12:56 PM   #1
moogie
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The goodness of Remicade

With xmas coming I was remembering how I passed last xmas.

Last year I was in pain could eat anything was dead tired and was a real downer for my entire family. I had no idea this site existed.

This year I am in the middle of my treatment and while on remi I still am careful of what I eat I can still eat about 90% of things I like. I have all you people who understands me to talk to!

To say that, about a year ago, I was down and now I am smiling and happy. I know this can stop at anytime but for now at least I am feeling great and I can't wait to spend xmas with the kids outside in the snow and kicking their butt in Skylander!! Go wrecking ball!!!!

To all of you out there stay strong and if you are down or feel a bit sad drop us a line let it all out together we are stronger!
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DX - CD summer of 1987
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Getting 5mg now. full dose. cost 5500$ )
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3 resections
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On Remicade Since April 2011 I am alive again!
12-07-2011, 01:22 PM   #2
Jessi
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Yay Moogie! I'm so happy it's working so well for you, too! I just had my 5th infusion yesterday afternoon. Feelin' groovy!

Teach me about this snow game Skylander, please. I have beautiful powdery snow here in the mountains of Utah, and I love to play in it with my kids, too.
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12-07-2011, 01:38 PM   #3
moogie
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Hey Jessi,

The snow and Skylander are two different things LOL

We play in the snow sliding and things like that, but Skylander is a new game on the Wii we got. The kids just love it and now I have to play hard to be able to beat them hehehe
12-07-2011, 02:25 PM   #4
Jessi
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Darn. I was hoping for a new outdoor game. Thanks for the tip, though. I've got the Wii and wouldn't mind adding a new game to the collection.
12-08-2011, 11:14 PM   #5
guest9933
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I'm hoping for the same thing this xmas as i had the same xmas as you last yera moggie I have only had the 1 infusion but will be getting another 1 hopefully middle of next week and am actually looking forward to xmas and new years as I don't have to look at a nice spread on the table and not be able to eat any of of it.

But this year I hope to actually have a feed and run around with the nerf guns with my little cousins its summer here in oz
12-10-2011, 03:58 AM   #6
crazycanuck
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Congrats on the success with it. I felt similar last year when I started my Remicade in October. Just fantastic to eat what you like and not have to pay for it during the holidays.
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12-10-2011, 01:03 PM   #7
QueenGothel
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M DD is admitted at children's now she will be 4 in 2 weeks. They are giving her IV steroids now but no change. They are talking about starting remicade on Monday. I have heard it I only for 6 years and up and I am really nervous about it. Do you still take other meds in addition to the remicade? Asacol, pred, ect?
12-29-2011, 03:59 PM   #8
moogie
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I take Purinathol pills which is an immuno suppressor. To help keep away the rejection factor or so I'm told.

Other than that nothing at all.

Poor little muchkin... being so young and all.

Good luck!!
12-29-2011, 04:02 PM   #9
tiloah
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Thank you for posting this. I am so glad to hear you are doing better. This forum has been such a boon for many of us. I am so grateful to have it in my life.
12-30-2011, 11:10 AM   #10
Jessi
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Hey Moogie ~ My son got the Skylander game for Christmas. You're right... It's a lot of fun.
01-03-2012, 12:55 PM   #11
moogie
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Hey Moogie ~ My son got the Skylander game for Christmas. You're right... It's a lot of fun.
Indeed it is. my kids have like 10 different chars.
01-03-2012, 11:06 PM   #12
Jessi
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My son has just 8 guys so far. For Christmas this year, he got the xbox 360, the kinect, the game, the 8 characters, and the strategy guide.


Spoiled much?!!??!



side note... Wow! We've really drifted from the subject at hand.
Remicade IS good.
01-04-2012, 03:24 AM   #13
Cross-stitch gal
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Thanks for the info on Remicade Glad to hear a litttle about it. My GI has mentioned maybe starting me on it at one time. But, hasn't. Can you guys please tell me a little more about how it works? Plus, how do you afford the stuff? Is it really expensive? Thanks!
Lisa
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01-04-2012, 12:35 PM   #14
Jessi
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@ Cross-stitch gal ~ I don't have insurance, so I thought I'd have to pay for it myself ($1400 per infusion). But I applied for the Johnson & Johnson Patient Assistance Program, and I get it for free. You'll have to ask your doctor for an application, I think.

If you do have insurance, but it still costs too much out of pocket, then RemiStart will help for the first year.

The medicine is given via infusion every 8 weeks (or sooner, if needed) over a 2-3 hour period. This is usually done in an infusion center, but mine are done at home. Remicade is an TNF-alpha blocker (suppresses a part of the immune system, so that our bowels won't be under attack anymore.)

It works for a lot of people, but for some, it doesn't do the trick. Every person is different. If it works, you continue to get infusions for as long as it continues to work for you.... months? years? for life?

Good luck if you decide to do it.
01-06-2012, 02:23 PM   #15
moogie
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I have 2 insurance to cover the price. Mine costy 4500 per infusion and I go the the center every 6 weeks.

It works wonders for me. Except for being tired for about 24 hours it's great stuff. I can eat all I want and I stop having the D for mopst of that period. My GF hates it because when I am on it I fart all the time LOL
01-06-2012, 02:39 PM   #16
Cross-stitch gal
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Thanks for the information! That does help a bit However, right now it looks like my GI isn't interested in putting me on the stuff. The farting kinda brings back funny memories though. I've been shopping with my Mom before when I've just started getting sick and would have some bad gas. Boy, have I really cleared out some aisles and parts of small shops!
01-06-2012, 04:17 PM   #17
Jessi
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We've all been there.

01-06-2012, 07:08 PM   #18
SarahAnne
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Hilarious, I was in Hobby Lobby with my mom and daughter today, trying to alleviate some very painful gas. I finally had to go to the bathroom for fear of having an accident. There was a woman in one of the stalls having a pretty hard time of it, judging from all the heavy breathing, grunting and shifting around. It almost sounded like she was trying to have a baby in there; I had to leave.
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Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
01-06-2012, 07:37 PM   #19
Cross-stitch gal
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Ha Ha Ha The first time I cleared the ways was in a gift shop, we were looking at souveneers and the next time was in a Michael's craft store. The ladies that happened to be around were crowding mom & I until that moment, then gave mom a dirty look and walked away. I got a little scolding from my mom and then later we were laughing a bit, she admitted that she might like me around if she's needing to look at something just for that reason! Sure hate that feeling of possibly having an accident. Know what you're feeling SarahAnne.
01-06-2012, 10:18 PM   #20
guest9933
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I hate it when you get those painfull gas cramps in a public place I usually hide in an empty isle and let it rip if I don't feel something extra coming out but on the upside my guts feel grouse after a big fart
01-07-2012, 03:07 AM   #21
Cross-stitch gal
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You're right. It is worse if you can't tell which one it's gonna be. I too have been there quite a bit this time around.
01-09-2012, 09:13 AM   #22
moogie
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Thanks for the information! That does help a bit However, right now it looks like my GI isn't interested in putting me on the stuff. The farting kinda brings back funny memories though. I've been shopping with my Mom before when I've just started getting sick and would have some bad gas. Boy, have I really cleared out some aisles and parts of small shops!

Oh yeah so I am not alone hehe Everybody wonders why the Zellers store near my house was empty during xmas... I was shopping there LOL
01-09-2012, 02:40 PM   #23
Cross-stitch gal
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That's terrible, but funny! He He Nope, you aren't alone. There's a couple of times this time around that I didn't get the chance to make it to the bathroom (just as bad when you're in the car). Not fun at all But, at least we can say that we're all in this together.
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