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07-02-2010, 12:30 PM   #1
Donna1
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Cimzia

Hi Everyone:

Im starting Cimzia next week for the first time. Can anyone help me with what to expect for side effects. I know everyone is different but I just wanted to know what everyone else has experienced. So far I have only tried Pentasa about 3 years ago and I was unable to stay on it becuase of the side effects (D got even worse if you can believe it). I had three surgeries about 3.5 years ago while I was pregnant and after that I was on prednisone for about 1 year but the doctors have been trying to get me on something for the past three years. I finally gave in and now next week I will start Cimzia....

Thanks for any input.

Donna
Crohns since 1995
07-02-2010, 01:14 PM   #2
Mike
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I see you are in Mass. I hope you do not have to deal with the specialty CVS in Milford to get it. I was on it for a few months along with a few others within my GI's practice. None of us were able to get doses on time if at all. I got the first three, then the next maintenence one showed up two weeks late (despite numerous calls and messages with none returned until my doctor called them). Then I did not get my next one, it was just wrong. My doctor has since taken all of his patients off of Cimzia because of that damn CVS in Milford not sending it out and not returning calls and just being a pain to deal with.

Even dealing directly with Cimzia to get them to deal with CVS does not work because CVS won't call them back. It is crazy, they are loosing so much money.
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07-02-2010, 01:22 PM   #3
Donna1
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Hi Mike

Thanks for the reply, fortunatly I am dealing with Medco who just delivered the meds by mail. It was pretty easy, I called yesterday and they delivered it today, lets hope it's as easy next time I call. My local pharmacy (riteaide) does not carry it.

-Donna
07-02-2010, 05:38 PM   #4
belle1999
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I was on Cimzia for a short time. I didn't really have any side effects. I only went off of it because insurance wouldn't pay for it.
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07-02-2010, 08:05 PM   #5
Procyon
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I didn't really have any side-effects. Did a number on my immune system though; more so than other drugs. Seems like I was always sick with something while I was on it. But I'm sure that varies from person to person.
07-03-2010, 09:04 AM   #6
ThanksP
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Cimzia has been like a miracle drug for me. It completely put me in remission with only two very mild side effects. After the injections, I feel tired the next day. I can take one day of rest over the 24/7 pain I had previously. The only other side effect I have is sometimes my skin feels like I have a mild sunburn. The kind of sunburn you don't notice until you scratch your skin. It isn't bothersome at all, just something I noticed a long the way. I've been on Cimzia since March and have yet to get a cold, flu, etc. despite a two week vacation to Costa Rica. Although I always carry Germ-X with me and am mindful of germy situations. I feel so good now that I have almost forgot I have Crohn's (although I try to remember so as not to get sick again). I have had zero problems with the delivery of my Cimzia. In fact, they have been more than helpful. Don't forget to ask them for a sharps container if they don't send one.

Good luck to you. Cimzia has been a lifesaver for me. I hope it works as well for you as it has for me.
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07-03-2010, 09:18 AM   #7
katiesue1506
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I work with Medco too for my humira and they are really good about getting you the meds. Mine is shipped UPS red and is here by 10am the next day after shipment. They also call you to schedule reorders and will ask you doc for a prescription refill if you run out. I've liked them.
07-03-2010, 07:52 PM   #8
slice
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I've been on it for a year, and about 5 months or so, after it started to loose effectiveness upped to 400mg every two weeks. I haven't really had side effects on either dose, except ocaissonally when it's working super well the first week, I've gotten a few bouts of insomnia from being super high energy. I've also had the other where I've been tired the first 24 so it's tough to say what's from what. I also gained a little weight the first 6 months and have had heart burn first couple of days after I take it. My doctor said for me it acts a bit like a steroid in that way. I've had a great experience with it in general but everyone responds so differently. Good luck with it!!!!
07-04-2010, 06:57 AM   #9
brenda1
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Hello, I have been on Cimzia since jan 2010 and it has been like a miracle to me. I have been able to lead a much more normal life and have not experienced any sever side effects. Some tiredness for a couple days after the shots is about it. I also had my hip replaced in April and never got sick or any infections, in fact the whole time I have been on it I have not been sick, even with my children and husband all being sick this winter. It has unfortunately stared to lose effectivness so I will now be takin it every 3 weeks instead of every 4, and as far as receiving my meds I get mine from Amber pharmacy and they have been absolutly perfect and I get my meds at least 1 week before I need them through the mail. I hope Cimzia works for you and you have success with getting your meds good luck!
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07-22-2010, 11:10 AM   #10
Donna1
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I finally received my first set of injections on Saturday...big delay due to the home nurse schedule and paperwork of course. But anyway, so far so good. I started feeling better the next day. Not sure if its due to the Cimzia or not but hey, I'll take it anywhich way it comes. The only side effect I had was an immediate headache right after the injects but Tylenol fixed that right away. My next shots will be on July 31st. I hope they goes as well as the first set.


-Donna
07-22-2010, 11:24 AM   #11
brenda1
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Donna I'm glad you started feeling better after the shots. Like I said Cimzia has worked wonderful for me. I just stated taking it every 3 weeks instead of 4 and I am doing great. I didn't have any adverse reations. Let us know how it goes for you.
08-02-2010, 01:55 PM   #12
Donna1
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Well, things went from good to not so good, my whole mouth is now full of ulcers, I can hardly talk and eat. Its even more then just the ulcers, the whole mouth is swollen and burning. I have a call into my dr. still waiting for a reply. Ugg I was really hopeing this was going to work...
08-02-2010, 02:17 PM   #13
Lisa
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I get those every so often (Had them after my bout of strep!!!), and am not on Cimzia.....stomatitis I think it is called.....do you get cold sores anyway? Could be a flare of the herpes virus.....just hope that is it and not directly tied to the meds~!
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09-25-2010, 10:27 AM   #14
misterquin
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I've been on cimzia since august 2009 and it worked wonders for me! Put me in remission for months. I mean total remission. I had almost no symptoms for about 6 or 7 months. It takes a few months to actually kick in, but I hope you see success as I did. Now as of late, I've been experiencing quite a long flare and have my injection today. Hopefully some symptoms clear up after that.
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09-29-2010, 04:15 PM   #15
Donna1
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I made it another month, still not symptom free, had an MRI last week and all looks OK, but still does not explain the increase in D. I have had this for the past month or so and its not getting any better. Of course the one day that I was at my GI's office my D was not so bad, actually had a break for a whole day...but then it came back the next day. My mouth ulcers cleared up after about two weeks and then I got them again about a week after my next shot but that time was not bad at all. Im now on Metronidazole which I think is helping but boy am I nauseous. Some weird side effects of the Cimzia that I'm experiencing: skin issues, hair loss, vision issues (I saw an eye dr and he said its just due to my age, once you hit 40 it all goes down from there, I'm still not convinced or maybe just in denial), on a brighter side, I have no pain in my joints and let me tell you what a difference that makes. I can actually get up in the morning and go down the stairs alternating feet. I have not been able to do this in years. Sorry for the rambeling Im just trying to remember everything in case it can help anyone else on Cimzia.......
09-29-2010, 06:39 PM   #16
ThanksP
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what type of skin issues are you having? I get this weird, slight burning, almost sun burn type of feeling a few days after my injection. Like I said in my previous post, its nothing bad at all, just odd.

Oh yeah, I started to get the hair loss too. I've been taking Biotin and I think it might be slowing it down some. Thankfully I had VERY thick hair to begin with. I'll still take the hair loss over being sick ANYDAY!

Glad you are getting some relief.
10-06-2010, 09:59 PM   #17
kayvank
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Hey everyone,

Ive been in and out of the hospital lately with partial obstructions. Just got out yesterday; was in for 4 days.

Spoke with my GI doc today and I am looking into taking Cimzia, just gotta see how much of the insurance will cover first. I am hoping this will work out. If not then i am gonna have to do surgery. My CD is affecting where my Small/Large intestine meet, so if i do have surgery, that is where they will cut out. I know that the CD can come back, but i dont really know what to do. Just ready to feel better.

I know everyone reacts different with Cimzia, so im hoping it will work.
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10-07-2010, 05:03 AM   #18
effdee
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I've been on Cimzia since late Spring/early Summer. After I took my first dose, I had improved by the next day. After the second dose, same thing; I got better by the next day, and things kind of held there. After 3rd dose, I started flaring again (still doesn't make any sense to me). I didn't have any side effects except sometimes the injection site would get a small rash for a few hours.

Doc doubled the dose to 2 injections every 2 weeks and that didn't really change much. Hope it works out for you.

Last edited by effdee; 10-07-2010 at 10:51 AM.
10-07-2010, 10:00 AM   #19
kayvank
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I've been on Cimzia since late Spring/early Summer. After I took my first dose, I had improved by the next day. After the second dose, same thing; I got better by the next day, and things kind of held there. After 3rd dose, I started flaring again (still doesn't make any sense to me). I didn't have any side effects except sometimes the injection site would get a small rash for a few hours.

Doc the dose doubled two 2 injections every 2 weeks and that didn't really change much. Hope it works out for you.
I will update you all once i decide what to do......doc said that there is a 90% chance that i will have to do surgery, but we will see....
10-08-2010, 12:02 AM   #20
don1jones
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I just received my first order of CIMZIA. Have it in the frig and all I need to do is call the nurse. Medco was fantastic. Called me and explained CIMZIA. My doctor never told me one thing about it. Just sent CIMZIA a prescription. Costs me $65 every 90 days. Can't beat that. Now I am trying to make up my mind if I want to start this medication or get a new doctor. I have had this disease for over 30 years. But mine must be mild compared to many of you. Bless you.
10-12-2010, 11:06 PM   #21
kayvank
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I will update you all once i decide what to do......doc said that there is a 90% chance that i will have to do surgery, but we will see....
Ive decided to do the cimzia...in the process of testing for TB, guess they want to make sure i dont have any upper respiratory infections before i start it.

Will be starting it in another week or 2.
10-17-2010, 11:49 PM   #22
kayvank
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Does anyone know of a Laparoscopic surgeon in the Orlando area?
02-26-2013, 09:37 PM   #23
beck
 
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My boyfriend has Crohn's and has been on Cimzia for the last few years... about 3 1/2 years actually. He was originally getting the injections once a month in his stomach but after he had a shingles outbreak about a year ago, his doctor switched the injection site to his arms. He says that the Cimzia works better than anything else he's ever been on with regards to flare ups and such. The only thing is that Cimzia literally wipes out his immune system so that if he even gets a mild cold it turns into strep throat or something else dreadful--while most people get sick for a week, he will be sick for weeks and even a full month sometimes. Thankfully, since he works from home and lives a very sanitary life, he only gets really sick about once a year.

Recently he got sick and had to miss his injections, putting them off for 20 days. He is no longer sick and got his missed injections a few days ago but has been experiencing horrible back pain for the last week or so. Has anyone else experienced joint pain or back pain from not getting their Cimzia injection on time?
03-01-2013, 09:31 AM   #24
Crohn's Mom
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Hi beck and welcome !
My daughter also takes Cimzia and gets a lot of sinus infections and colds that last much longer.
She does get joint pains, and yes, when she has had to go without her injections they seem to get worse. Makes us believe that the Cimzia is really helping with that !

How is your boyfriend feeling now? Any better I hope?
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03-01-2013, 02:58 PM   #25
beck
 
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Crohn's Mom, Thanks for the response and the warm welcome Nice to talk to others who spend their time stressing out about the same worries! Unfortunately, my boyfriend's back pain is still persisting and I think it's due to sacroiliac joint pain. He got his late shot 4 days ago so I'm hoping the pain stops soon-- although joint pain can be a side effect of Cimzia so it all makes me so confused!

I hope your daughter is doing well, how old is she?
03-02-2013, 12:56 PM   #26
Crohn's Mom
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Does your boyfriend see a Rheumatologist beck?
It may be helpful for him, as he may need another treatment for the back pain?
Joint pains can also be an EIM of Crohn's unfortunately.

My daughter will be 20 tomorrow She has had Crohn's since she was 9.
She's not in remission right now unfortunately, but we have several appointments Monday to meet with her surgeon and GI and hopefully get some answers, or a new treatment plan to try and figure out how to make her feel better.
03-02-2013, 02:32 PM   #27
beck
 
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He has not seen a rheumatologist yet, this is only the second time over the course of a couple of years that he has had such issues with joint pain, I suppose if it continues that's the next step we will take. Happy birthday to your daughter by the way! My boyfriend was diagnosed at 14 and is now 24. You sound like an excellent mother, your daughter is very lucky to have you

My boyfriend was in terrible pain and feeling very sick a few years ago, he could not even lift his leg up to put a sock on without experiencing a shooting pain. His GI decided he should go the surgery route and although recovery was not fun, it was well worth it. He had a reconnect and the surgeon removed a lemon-sized ball which has significantly reduced his flare ups and stomach pains.
04-05-2013, 09:19 PM   #28
Essieluv
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So far I have only tried Pentasa about 3 years ago and I was unable to stay on it becuase of the side effects (D got even worse if you can believe it).

Interestingly, one of the side effects of Pentasa is D. Weird, huh? Anyway, I hope Cimzia works for you . I think I will be starting it soon, too.
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