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07-12-2013, 04:57 AM   #1
bumdeal87
 
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Location: Henderdson, Nevada

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Cimzia Users

Hello!
I have had Crohn's for 26 years. I've been on every medication known to be related to Crohn's and have had varying results. I've had multiple surgeries and I'll say the same as I do on doc evaluations...way to many to list! I was in remission from 2008 until March of this year. I was controlling my symptoms with diet and yoga (relaxation). In Jan of 2010 my mom was diagnosed with Acute Myloid Leukemia. Although I have a husband and three children I spent as much time with her as possible. It was difficult being away but I am not sorry for making those choices. My husband and I joked that we were just waiting for a flare because for me these tend to follow times of great stress. I think the big guy was watching out for me because I enjoyed relatively good health until about 4 wks after she passed away.
Since I have had Crohn's for so long the last available drug for me is Cimzia. I just recently took my third dose of 400mg and I feel as if I've been run over by a mac truck. My whole body aches and I feel as if I have the flu all the time but I don't. It really has't changed my BM habbits which are now up to 10+ times a day. I am really fatigued and could sleep round the clock if I didn't need to feed the natives every once in a while. Seeing as my mom passed of cancer the side effect sheet really concerned me as it list a much higher rate of developing lymphoma or leukemia. As I am new to this drug I would appreciate any and all feed back.
I am new to "chats" or forums as I've acted as though I don't have the disease as long as I'm not hospitalized. Just for sanity's sake...maybe not wise as I could have used the positive feed back that I have been reading on here.
I am generally a positive person and take things in stride but I have to say this flare has got me down.
07-15-2013, 05:02 AM   #2
DustyKat
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Hi bumdeal87,

I see you have introductory post in this forum and as this post is asking specifically about Cimzia I will move it to the Cimzia forum.

We have no experience with Cimzia at our end but hopefully there will be others along soon to help out with your questions. Crohn's Mom has a daughter that was on Cimzia so I will tag her into this.

Dusty. xxx
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07-15-2013, 07:40 AM   #3
nogutsnoglory
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Welcome to the forum, I'm sorry about your loss. Have you told your doctors you feel so lousy? It's not uncommon to feel that way the day of the injection but it should go away after. You are on the 3rd loading dose and I think by the next injection you can get a good sense of whether this drug is right for you.
07-15-2013, 05:20 PM   #4
bumdeal87
 
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Welcome to the forum, I'm sorry about your loss. Have you told your doctors you feel so lousy? It's not uncommon to feel that way the day of the injection but it should go away after. You are on the 3rd loading dose and I think by the next injection you can get a good sense of whether this drug is right for you.
I have told the doctor and he has suggested I just hang in there. I usually feel the worst 5 days after the injection. I am following through with this as they say there isn't much else they can give me since I've been on all the common drug...Remicade, Humira etc...I guess we'll see what happens! Thanks for your reply I'm not so sure I know how to use this site very well.
07-15-2013, 05:28 PM   #5
bumdeal87
 
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Hi bumdeal87,

I see you have introductory post in this forum and as this post is asking specifically about Cimzia I will move it to the Cimzia forum.

We have no experience with Cimzia at our end but hopefully there will be others along soon to help out with your questions. Crohn's Mom has a daughter that was on Cimzia so I will tag her into this.

Dusty. xxx
Thanks for that...lol! I am not real good navigating this site yet but it's very encouraging reading others stories and experiences. Although I've had this for 26 years I've pretty much toughed it out on my own. Appreciate your help and the post!
07-15-2013, 06:52 PM   #6
nogutsnoglory
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There have been cases of people who feel lousy getting used to the drug but don't be discouraged if it doesn't go away. There are other biologics that can be used off-label or obtained through clinical trial if necessary.
07-24-2013, 10:38 PM   #7
kiltubrid
 
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Might you actually have the flu? Since Cimzia is an immunosuppressant, you are more susceptible to every little bug. I caught the flu just after my second dose of Cimzia, and I was really sick for about ten days. The first three days I thought I was going to croak! I could not even get out of bed. I've been on Cimzia now for about two and a half months and am feeling a bit better than before I started it. Still have some fatigue and joint pain but that's about it. It can take three months to be fully effective. Good luck! I hope you feel better soon!
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Diagnosed with Crohn's Disease Oct 1982; Rheumatoid Arthritis Nov 1985; Ankylosing Spondylitis June 2015
Taking 150mg Azathioprine; Remicade, Tramadol, Celebrex
Been there, done that: Sulfasalzine, Pentasa, Asacol, Prednisone, Budesonide, Cimzia, and more colonoscopies than I can count
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