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FINALLY! Remicade Appointment

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Ulcerative Colitis
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Posted 1/28/2009 10:53 PM (GMT 0)
Well after two and a half weeks of waiting in the dark, I finally got a slew of phone calls today and have my first Remicade appointment set up for next Tuesday, February 3rd. Best part is, I only have to pay $45 for the medication itself... Not sure about the hospital costs, BUT... I also got a call from Centocor/AccessOne today and they said that I qualified for the RemiStart program! yeah   So they said all I have to do is when I receive the EOB from my insurance company, I mail/fax it to them and then they will send me a debit card with the amount that I'm responsible for that they will pay and I just pay my hospital bills with that. So cool!

I'm really excited now so I just had to share the news. Almost there!! Now I'm just crossing my fingers that it actually works!
Posted 1/28/2009 11:31 PM (GMT 0)
Good luck with it!! It did take me quite a few infusions to finally achieve a good remission, but I did have a noticeable improvement within a few days after the first infusion. I am now in complete remission with infusions every six weeks, 4 daily Lialda pills and twice daily Canasa suppositories. Thank god I have decent insurance, hope it stays that way.

On infusion day pack a little tote bag with plenty of quiet things to do. I bring a book, my Zune player to watch or listen to podcasts if I don't feel like reading, and often times I'll bring my current needlepoint project. So far I find I like working on the needlepoint while listening to podcasts, that makes the time go by quickly. You may also want to bring a snack, or a meal if you'll be there over meal time. My infusion clinic serves a meal, but it's really awful (well, it's hospital food).

My routine for a morning infusion is to make a breakfast stop on the way and pick up a bagel and coffee, go to the infusion clinic with the morning paper, my needlepoint and Zune ... and then promptly take a three hour nap after I've been hooked up and had my breakfast!!

I wish you every success with Remicade!!

Meesh
Posted 1/28/2009 11:45 PM (GMT 0)
Thanks Meesh! That sounds like a good plan. Maybe I'll stop at Dunkin' Donuts on the way... My mp3 player broke but as soon as my tax return comes back I plan on buying a Zune as well (soo much better than iPods! hehe), so I guess no music for me this time. But I do have a book I've been meaning to finish too so at least I'll have some time for that.

Glad to hear you're in remission!! That's great, and very encouraging to hear :)
Posted 1/28/2009 11:59 PM (GMT 0)
I like the Zune because it has a radio. Why don't iPods have radios? And I just resist the whole Apple schtick on principle.
Posted 2/5/2009 11:02 AM (GMT 0)
Well I'm excited... My appointment is today at 10am (it got moved from Tuesday waiting on the meds), so I'm just sitting around anxiously waiting for it to be time to go... 3.5 more hours, maybe I'll go back to bed! Just started re-reading George Orwell's 1984, so that will give me something to do. Still haven't gotten my Zune yet but oh well. Meesh I totally agree, iPods need a radio. They are just sooo overpriced for what you get. I mean, for $249.99 I could get a 120gb Zune, or an 8gb iTouch. I'd rather have the 120gb than an unnecessary touch screen. Besides, they are not durable at all- drop an iPod once and it's toast. And then there's the whole iTunes mess... I won't even get into that!


ANYWAY, I'm getting off topic here, haha. I'll be sure to post later with how the infusion goes! smilewinkgrin
Posted 2/5/2009 2:03 PM (GMT 0)
I just had my 18th infusion yesterday. I always take something to read, and I often nap. Yesterday I slept most of the time, came home feeling refreshed but tired. I'm always tired the rest of the day after my infusions, so I give myself the day off and just laze around.

Good luck, I hope it works as well for you as it has for me!
Posted 2/5/2009 4:58 PM (GMT 0)
Good luck EdieKristen! Meesh has some great ideas; I always found it quite nice to have the down time and a nap is always in order. My nurses always give me a heated blanket and I'm out like a light! I usually go after work, and yes, when my infusions were longer I'd bring in a snack and water and some good mags or a book. Let us know how it goes!

Posted 2/5/2009 8:52 PM (GMT 0)
Thanks everyone! It went pretty smoothly, I was hooked up by 10:30 and relaxing with my book.. It was 35 degrees out today and the medicine was also icy, so my arm was extra cold but I just kept it under the warm blanket and it was okay. My least favorite part about IVs is getting them taken out because they always tape you up with tons of the extra strong tape, so it was a little uncomfortable as she ripped all that out while pushing down on the IV apparatus. I didn't have any reactions though which was a plus, and I took a nice two hour nap when I got home and I feel okay. One other bonus is my feet and ankles, which were extremely painful this morning, feel great right now. Not sure if it's because of the Remicade or because I laid there for two hours with my feet elevated, but either way I'm glad.

I have my next appointment on Feb 19th and again on March 19th. I also got my RemiStart info in the mail today so as soon as I get my EOB I'll be sending that sucker out. Hooray for little or no hospital bills!

I think next time I will bring my portable DVD player (which I haven't had a use for in awhile) and watch a movie. It was a little boring even reading a book, and kind of depressing being surrounded with cancer patients receiving chemo and/or blood transfusions. This little old man next to me started having a reaction to getting a few units of blood and he was freezing and shaking violently, I felt bad. He was so nice though and when I was leaving he wished me good health and a good day, while he was sitting there shivering. I'm sure some people probably assumed I was in there for cancer as well, and I'm so thankful that isn't the case.
Posted 2/5/2009 9:12 PM (GMT 0)
Hey EdieKristen, I'm glad things went well for you. Could be the Remi helping out your joints; it's used for RA as well! I too see so many others in my infusion center with horrible medical issues to deal with. Makes me feel like UC is a walk in the park, although I know it wasn't-- especially when I was so sick. My hospital has opened a new infusion center which I'll go to for my next infusion and the chemo patients will be housed with us. That will be a toughie to watch for sure. Take care and glad things went well for you! Keep us updated on how you are feeling.

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