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Crohn's Disease Forum » Treatment » Cimzia/Certolizumab » First day on Cimzia, first day posting here


03-26-2010, 08:57 AM   #1
ThanksP
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First day on Cimzia, first day posting here

Hello all! I've been lurking around here for a little while now and figured today would be a good day to introduce myself.

I've been diagnosed with Crohn's since March 2006 and had been in remission for years. In fact, I even stopped taking meds for over two years and life was good. My husband was in Afghanistan for two years, and I even managed life thru that without a flair. So yadda yadda yadda....my Crohn's is back and I've been battling it since Christmas.

My next step after the evil Prednisone is Cimzia. My insurance approved it and today a nurse is coming over to teach me how to use it. I pride myself on being a very tough, independent woman who can do anything and everything on my own. But this is proof I can't. I'm just going to have to suck it up and deal with it. Reading everyone's stories helps me realize that I am blessed in so many ways.

I hope to get to know you guys more. Thanks for taking the time to read my story.
03-26-2010, 09:05 AM   #2
Crohn's 35
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Hi there. Glad you found us! I am like you, try to suck it up and being strong but ...seems every Christmas I get sick, this past year I made it through but afterwards, all heck broke loose.

This would be a great post and blog to let others know how you are doing on Cimzia. We Canadians, are not privy to it yet. It is also the only biologic I havent tried. The evil Prednisone.. how nice to be able to get off that soon. Causes so many side effects, thanks to Prednisone I have a gall bladder removal and dx last year with a Hiatus Hernia.

There are wonderful people here, to help you and give you some encouragement. We all have our up and down days. Sorry you had to come here, but lots of info here!
03-26-2010, 10:00 AM   #3
LOSTnut
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I've been lurking for a while too and feel like a whiner when I read some of the stories here -- absolutely heartbreaking how some of you are "in a world of sh***".
I will introduce myself in a little bit and give you my backstory but just wanted to let you know that I am on Cimzia since November.
Initially, I thought the same thing -- shoot, I cannot give myself shots but it is easier than you think. For 3 months I had togive myself shots every two weeks to get the level of medicine to a certain point. Now I am on monthly shots. While I was on the bi-weekly I felt absolutely great. Probably too great because I started behaving like I am a "normal, healthy" person and B-A-M --- currently my body is in the process of producing another painful abscess. So, I am back on antibiotics and hoping that they will do the trick without having to get the CT for drainage.

So, my advise: Once the Cimzia takes and you feel great, don't get too carried away and try to stay the main course.

Best wishes!
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Heike

Diagnosed: April 2005

Back on Asacol

Dec 2010: colostomy/resection - failed
Jan 2011: Ileostomy
Resection planned for: sometime
03-26-2010, 11:21 AM   #4
Astra
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Hi to you both
and welcome

Yeah, me too, strong, fiercely independent, there for everyone, then BAM, hit the deck at Christmas too and ended up in hospital for a week! What an unpredictable bitch Crohns is!
I agree with Penny, a great help to us regarding Cimzia, I'm going to talk about it, or Remi or Humira with my doc in April, in the meantime, still on the Big Evil!
So good luck Thanksp, (what's your name btw)
And good luck Lostnut ( name)

glad to have you both on board
lotsa luv
Joan xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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Last edited by Astra; 03-26-2010 at 11:26 AM.
03-26-2010, 11:27 AM   #5
Nyx
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Welcome to the newcomers! What is with Crohn's and Christmas anyway? I was in hospital this past Christmas too! Damn disease....

Anyway, hope you both get to feeling better soon!
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Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

03-26-2010, 12:09 PM   #6
LOSTnut
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Thanks for the welcome!

My name is Heike and I am originally from Germany, hence the weirdo name.

Cimzia! Well, at my last months check-up, prior to the abscess, my doc told me that I could be a poster child for Cimzia. No side effects whatsoever just that great, healthy feeling that eludes us most of the time. No fatigue, slept well, ate (too) well, felt like pre-Crohn's. I was able to get off the Asacol and am now just with a daily dose of 50 mg Azathioprine (besides the antibiotics for the current malady).

Since I felt so good it is hard to figure what you would like to know about Cimzia. So shoot the questions this way and I'll try to answer them as best as I can.
03-26-2010, 12:46 PM   #7
Lydia
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My Crohns got real bad during xmas too. I went from mild to severe that month and could not recover no matter how hard I tried. I start remicade this tuesday and I hope it helps.

Welcome and good luck!
03-26-2010, 01:18 PM   #8
ThanksP
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Thanks for the replies and especially more info about Cimzia. It's been difficult finding any info on it. Less than an hour before the nurse shows up...EEK! It's truly wonderful to be able to read so many different experiences from all over the world in one place. I don't know anyone in my life that has Crohn's or understands it, although my dear husband tries desperately.

I spent this Christmas in the Middle East (Kuwait, Dubai, and Bahrain) with my husband before he came home. I think it was the strenous travel that got to me. But believe it or not, it was less stressful than being home for Christmas LOL Plus, like Heike, I felt Pre-Crohn's and acted accordingly. Oops! Won't do that again, EVER! No more strange meat on a stick from a street vendor at 3am.

Regarding Cimzia...HOLY CRUD that stuff is EXPENSIVE!!! $4500 for one shot! It obviously would not even be an option if my insurance hadn't approved me for it.

Thanks for the warm welcome,
Brooke
03-26-2010, 02:10 PM   #9
Jennjenn
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I hope the Cimzia starts to work for you. Welcome
I might be starting Cimzia this summer....Humira was not for me and Remicade worked for a bit but not as much as I needed. Even with the dose getting doubled I now built up antibodies against it and have experienced side effects. Hopefully if I do start the Cimzia it will be ok for me, if not I am in trouble! Not many more choices to pick from. I was not aware though that it is that expensive. Yikes! I hope that it helps you feel better, keep us posted
03-26-2010, 02:17 PM   #10
My Butt Hurts
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Hi Brooke-
Glad you found us. Good luck with your new Cimzia - I hope it kicks in quickly!
Welcome to the forum!
MBH
03-26-2010, 02:21 PM   #11
LOSTnut
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Yes, Cimzia is expensive and without insurance I would be royally screwed too. But, I am not sure if surgeries aren't more expensive with recovery, etc. My doc said he was really surprised how fast I got approved because now he has trouble getting two other people on it.

I learned from the nurse that I am on it for at least a year and that it takes quite a while to work. Sometimes it can take months before a positive effect can be seen.

Additionally, you have to have CBC's regularly. In the beginning I had to go every two weeks for three months, now I am on monthly for three months after that I can do every other month -- if my blood is ok. I think liver is one thing that can cause trouble.

I usually don't read what side effects there might be to avoid becoming a hypochondriac about that stuff. If I feel something is off and I am on new meds I look and see if that is a side effect and how seriously it can be.
03-27-2010, 03:11 PM   #12
alexandros8
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Hello!

I took Cimzia for about 8 months before I had to have surgery. My dad is a doctor and showed me how to do it myself. I really don't like needles, but it really isn't hard to do, or that painful. You'll figure it out quickly! I used my thigh, just pinch up a little skin, and go for it. Oh and make sure to flick the needle facing up, and squeeze out the extra air in there before you inject.

Interesting side effects I had... all related to my skin. I got some rashes that would not go away, and also got dandruff really bad. Never had any of these symptoms before, and now that I've been off Cimzia for a little over a month- they're gone. Dermatologist told me it was due to a suppressed immune system. Wasn't the end of the world, but just keep an eye out!

Anyway, it was too late in my inflammation for Cimzia to really do anything (so I'm told), so I can't really report on its effectiveness. But I'm positive you can do the shots yourself.

Good luck with it!!

Alex
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Diagnosed with Crohn's in 2001.
Ileocolectomy in February 2010.

Last edited by alexandros8; 04-04-2010 at 08:20 AM.
03-29-2010, 06:00 PM   #13
ThanksP
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Thanks for the heads up, Alex. I guess I can live with dandruff if this stuff works.

So far so good, did the shots on Friday and I've been feeling pretty good for two days now. And it wasn't nearly as scary as I thought.
03-29-2010, 06:09 PM   #14
Crohn's 35
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Congrats you made it this far and still being positive. It really isnt that hard. Alot of people use ice before they inject the needle. I did the Humira shots with a syringe, needles have never bothered me. Just dont like IV's...
03-29-2010, 06:48 PM   #15
LOSTnut
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Good for you! I hope the Cimzia will work for you as good as it does for me. That makes the shots pretty much worthwhile. And, while I don't have much to worry about warming the meds up during the summer in Tucson, during the colder months I put it in the bathroom.
04-03-2010, 10:24 PM   #16
ThanksP
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One week and I feel like a new woman!!!!

Although, Im trying to remember not to let myself get into a "pre-Crohn's feeling" so I don't get sick again. Yet I keep singing to myself, "knock on wood, Cimzia has me feeling good"!!!!

I hope many others get to try this drug if it continues to be successful. Pura Vida.
04-04-2010, 03:20 PM   #17
Astra
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Hey Brooke!

This is good news! so glad you're feeling a bit more human, fingers crossed now it continues.
Its my consultation on Thursday, so I'm gonna chat about Cimzia, not sure whether it's available here or not. the other option I'd like is Humira,
xxx
04-05-2010, 04:00 PM   #18
Jennjenn
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I am glad that it is helping you feel well! I will probably be starting Cimzia end of may and I hope that it works for me also.
04-05-2010, 08:37 PM   #19
shawne
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Hiyas! Good to see more Cimzites on here! Today I really felt like Cimzia was finally working for me. I'm probably lucky if i hit the head 5 times today! I'll take that any day!
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Shawn
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Sulfasalazine | Prednisone | Entocort | Asocol | Cimzia*
*=Current med(s)
Crohnie since '91
Currently in remission Yay!
04-06-2010, 08:28 AM   #20
ThanksP
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Hahaha, Cimzite. I like that.
04-12-2010, 09:25 AM   #21
alicia
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Hello and welcome im new to the site, but unfortunately not new to Crohns. I'm glad to hear you are doing great on Cimzia! I start on it next week.kind of nervous, but nothing else is working any more. and i dont want surgery...again! Best of luck to you my prayers are with you.
04-12-2010, 02:05 PM   #22
acg101
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dont be afraid of using Cimzia. Like everything else there are pluses and minuses in everything. I have been on it for the past 5 months, double dosage (400mg every 2 weeks) and hardly any side effects (makes me tired for two days). Also giving the shots it is not so bad and one gets used to it. most importantly, it reduced my severe pain to a manageble level.
good luck
04-18-2010, 08:34 AM   #23
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I am glad to hear you are getting good results on Cimzia, as I myself have to start it again once it is approved by my insurance. I was on it last year for two mths but my obstruction was so bad it did not work. Not looking forward to the cost, but certainly looking forward to relief!! Maybe second time is the charm!!Keep us posted on how you do!

Candace
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Diagnosed with Crohns 2007
First Resection 2004
Second Resection 2009


Cimzia - 4/28/2010
Azathioprine 150 mg- 5/25/2010
Folic Acid
B12 Weekly
Oscal
04-18-2010, 09:36 PM   #24
acg101
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Dear Candance, regarding the cost, your GI can write a letter to your insurance and the company that makes Cimzia has a program that can assist you in covering such costs.
the program name is Cimplicity.
good luck!
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