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First Remicade infusion today.

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Crohn's Disease
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Posted 3/10/2015 5:16 PM (GMT 0)
Getting ready to head out to the infusion center. Wish my guts would cooperate this morning. But they don't on any other day, so why not today!

Not really sure how I'm feeling, besides really anxious. Worry about reactions, but hopeful this is what will put me in remission. Fingers crossed!
Posted 3/10/2015 6:30 PM (GMT 0)
Good luck today! Hoping all goes well with your treatment :)
Posted 3/10/2015 7:18 PM (GMT 0)
Wishing you the best today with your first infusion!!

I know how you feel, I've always been either allergic or non-responsive to traditional oral meds (even pred only helped for a short time and only a handfull of times) so I was expecting a terrible experience with Humira that I started a year ago in February but so far everything has been fine, I just get really bad headaches after I inject myself but it put my CD in remission and so far no antibody issues either so I'm hopeful that you will have great success with your Remi!
Posted 3/10/2015 9:47 PM (GMT 0)
Good Luck Jen! Try to think positive thoughts. Remicade has been highly successful with lots of people. Let us know how it all goes
Posted 3/10/2015 10:20 PM (GMT 0)
Thanks everyone! :) It went very well. No reaction, just a bit tired from the benedryl. I go back in 2 weeks for the next infusion.

My copay was $300 though, so I need to see about that Remistart program. Anyone know if I can sign up by myself, or if I need my doctor to do it?

pb4, Humira gave me awful headaches after I would inject too. Seems to be a common side effect, but if it works then it's worth dealing with for sure! So glad it's help you get in to remission. Hopefully I'll be there soon, haven't seen it in so long I'm not sure I remember what that's like! lol
Posted 3/10/2015 10:57 PM (GMT 0)
Thanks Jen,

Glad it went well for you today! I'm happy for my remission too just wish I didn't have this dreadful IBS mainly constipated but I'll be seeing a registered dietitian soon so hopefully she can help me with that.

It was my GI's office that set progress up for me through Humira, I have a Humira coordinator that helped me set up my Alberta Blue Cross and the free boxes through Progress so I would think your GI would do the same for you but I don't know what their protocol is so you should definitely look into it.

Feel better soon and I'm wishing a successful and long remission for you!
Posted 3/11/2015 1:30 AM (GMT 0)
You could download and fill out most of the Remistart paperwork yourself from their website, but I am pretty sure your GI needs to sign it and provide some office information.

Congrats on the Remi! I hope it goes well for you. I've been on it for about 3 years now.
Posted 3/11/2015 1:39 AM (GMT 0)
I use remistart and the nurse coordinator at my hospital based infusion center initiated the application process and you will need your GI doc to fill out a portion of the paperwork. You have to renew each year so I went through that process. It was easy and I'm all set for another year.
Posted 3/11/2015 1:54 AM (GMT 0)
Good news Jen,

Glad it all went well for you. Many fell benefits from Remicade almost instantly. Are you taking some other immunosuppressant along with Remicade?
Posted 3/11/2015 3:31 AM (GMT 0)
Yes 73monte, I'm also on Methotrexate. A pretty low dose though right now (only 5mg). I think at the next appointment my GI will bump it up a bit, I want to make sure it has it's full potential in helping me not form antibiodies.

I printed the form and filled out as much as I could. I'm going to take it down to my GI's office tomorrow and give it to them. Hopefully they can get it going for me, $300 an infusion gave me a bit of sticker shock! lol
Posted 3/11/2015 11:52 AM (GMT 0)
Good for you Jen, hope it works quickly and gives you a very long remission : )
Posted 3/12/2015 3:40 AM (GMT 0)
I'm curious how you are feeling the day after? I am going to start Remicade next week and I'm very nervous about it! Doc said I may feel achy and tired the next day, kind of like flu symptoms.....
Posted 3/12/2015 6:51 AM (GMT 0)
Hi JLCat. I'm feeling pretty good today. I'd say a little more tired and maybe just a tiny bit anchy. But nothing a few Tylenol and a nap didn't take care of. My stomach actually did great today, not sure if there is a connection. But I was happy to get a break from that pain too.

I hope your infusion goes just as well next week. I think the anxiety about doing it was the very worst part. Like my nurse said yesterday though, can't read everyone else's horror stories and get upset. This is your story.
Posted 3/12/2015 3:04 PM (GMT 0)
Thanks Jen77!! Did they give you any premeds? Sounds like they are going to give me Tylenol, a steroid, and Zyrtec through IV right before infusion just to help with any allergic reactions. I hope you are still feeling good!! Thank you for your reply! I like that quote
"this is your story" so true!!!!! :)
Posted 3/12/2015 7:53 PM (GMT 0)
They gave me two benadryl, I'm still on steroids so I had also taken those that morning. That's good that they are giving all of that to you in the IV. I wish they would have done that for me. Works faster then orally. I feel pretty good today actually. Don't want to jinx anything yet though. lol
Posted 3/13/2015 3:55 PM (GMT 0)
I have been on Remicade now for six months. No premeds. No reatactions. No sign of antibodies. Just had my 5th infusion I think. And my next one is Mar 24th.

I find it takes one week to kick in. Then three to four weeks of feeling really good. Then it tapers off.

My strictures have settled done. (No barfing anyway). I'm on week six right now and still feeling good. Not a stricture in site.

My point is that it may take 4 or 5 doses to reach better health.

I wish you good health
Posted 3/13/2015 6:42 PM (GMT 0)
Sorry Jen77 for jumping in on your post! Deakin I am glad to hear it's helping with your strictures, that is my main problem, doc thinks they are inflammation and not scar tissue, so I am really hopful remicaid helps me, I start it next week! I just want to eat solid food without pain!!!! So sick of boost!! Good to know it may take a few doses to fully kick in!! I am hopfull!
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