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07-17-2008, 08:47 PM   #1
BWS1982
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Anyone on Cimzia?

I am very soon starting Cimzia after failing with any response from Remicade and basically everything else too....anyone (US in particular because it's recently approved, but anyone's welcome to chime in) speak on this drug and anything related to it? How often, anything I should know etc...

Thanks
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-diagnosed with Crohn's Disease in Sept. 2006, currently 28 years old

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07-17-2008, 09:36 PM   #2
RHOV
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Tell us all about it!

You should do one of those medication journal things like Kev and katiesue and butteze. cimzia is fairly new so there will probably be lots of questions!
07-17-2008, 10:05 PM   #3
BWS1982
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For when I start, I don't know exactly, going to find that out tomorrow I assume...I recently filled out the HIPPA form for release of info to get certified for it.
07-17-2008, 10:27 PM   #4
saidinstouch
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Its supposed to be pretty similar to humira and remicade just 1 shot a month instead of 2 like humira. Hopefully it'll work for you but otherwise I can't comment on it.
07-17-2008, 11:56 PM   #5
BWS1982
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Yeah, I don't know much more than what Saidinstouch just said above, I dig the fewer shots though, but don't dig the GI's outlook on it working after failing on Remicade, but at least this way I can't say I didn't try....1 in 5 is odd, but I sure as hell got the shitty odds with getting Crohns, and those were even higher odds.

Reason I haven't researched it much until now is because I wasn't 100% sure I was going on it for one, and the other is I've been so busy fending off disability goons from ruining what's left of my life.
08-11-2008, 03:51 PM   #6
My Butt Hurts
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Maybe I missed it, but did you start Cimzia Benson?
Humira isn't working for me so much anymore, and my Aunt mentioned Cimzia. I ran across this post while searching for info. Not a lot on here about it.
08-11-2008, 09:55 PM   #7
BWS1982
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Yeah, actually I just came to search for this thread and saw it bumped, I just got injected a few hours ago, I have to watch for the first 24 for signs of a reaction of sort....it is not a self inject pen, I opened the box for the first time when the home nurse arrived here, and there's 2 syringes and 4 viles. She mixed them 5 minutes after thawing, and then let the 2 bottles that were mixed sit and set for 30 minutes until clear. 2 vials are purified water, 2 vials are the Cimzia powder....they're not premixed. I found out a home nurse is required for each injection, as I said, there's no self injector pens, it's not as similar to Humira in that light as I was lead to believe. I get another set of 2 in 2 weeks, then a third 2 weeks after that, and then every 4 weeks indefinitely for maintenence....as I said, 2 syringes each time....didn't sting more than a normal shot, like a vaccine shot of sorts...just the sting of the entry from the needle. She told me they like to rotate the injection site each time, from thighs, to buttox, to stomach...I iced the area for a couple minutes prior to dull any pain. She said most see a difference in a couple days to a week, if they see a difference. Had to fill a bunch of paperwork out during the 30 minutes that the cloudy clumpy stuff slowly became clear. Put the used needles in the sharps container and that was it.

From the looks of the documentation, all patients (in the US?) get the first 3 free, and then you can get a discount after that if eligible. Mines going to be $100 a month after that, which isn't too bad if it works. Here's hoping-

To add, Butt Hurts, if Humira is doing nothing for you, unfortunately Cimzia is doubtful to be any different, because Cimzia is more of an upgrade to Humira rather than a different drug (half the frequency of shots, every 4 weeks maintenence)

Last edited by BWS1982; 08-11-2008 at 09:58 PM.
08-12-2008, 01:47 AM   #8
saidinstouch
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Hmm, hadn't heard how it was administered, but it sounds like they lypophilized(a sort of freeze drying to preserve if my mind serves me right) it like remicade to give it a longer shelf life but at the same time it leads to requiring it being prepared at injection time rather than ahead of time.

For Butt Hurts, what Benson said is true, but it also can't hurt to try it either. It works in a similar manner to Humira, but it is still a different protein meaning your body could react to it differently and because of their pegolation procedure (a protein modification that makes the protein seem more human) it is cleared more slowly which could also give you a better result. Worst case scenario is you waste another few months trying to find the treatment that works for you before going on the nasties like methotrexate or long-term pred usage.

I hope this works for you Benson and that $100 a month really isn't too bad at all.
08-12-2008, 02:31 PM   #9
BWS1982
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I didn't have to do any of the mixing though, but it wasn't that much anyways. They mixed my Remicade, they mix my Cimzia, I'm only involved in the administration part.
08-13-2008, 01:42 AM   #10
saidinstouch
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Yeah remicade comes in the exact same form just gets infused instead and you might not always see the prep portion.
08-18-2008, 04:46 AM   #11
Dixie
 
Hi there,
this is my first post. I have been reading for a few weeks and I'm so stoked to find a place where people talk about Crohns so openly.
I'm from New Zealand, medication like Humira and Remicade is very hard to come by here. There are a very limited amount of people able to receive the drugs because of the costs. Doctors don't usually even mention them..grrr!

I'm a 23 year old graphic designer and was diagnosed in January 2005.
I have Had an absolutely devastating time mentally and physically the last 3 and half years. Tried nearly every drug available here (as well as billion natural type therapys) and I was at my wicks end when my doctor mentioned a drug trial for Certolizumab Pegol. I gather this is the drug you are talking about as it was recently approved in the US. I am one of four people in my city receiving Certolizumab Pegol.
I am on an on-going trial as it hasn't been approved here yet...don't ask me why! But it is AMAZING!!! I haven't felt this good for 4 years and I feel like I'm starting to get my life back.

2 injections in the thighs or tummy every 2 weeks for 3 months and now 2 every 4 weeks. I am on open-label now which means I receive the drug for another 8 months or so. I've had no side effects so far.

If anyone has any questions or wants info, I am more than happy to help. It's nice (though unfortunate) to know I'm not alone in this Good luck for anyone who is on Certolizumab Pegol, I hope you have as much success as me although I hope I'm not speaking too soon. After reading some posts remission on these sorts of drugs may not last that long.

xx
Dixie
08-18-2008, 10:19 AM   #12
Isla
 
Welcome! I am glad you have found something that is working for you. Is the trial you are currently in the final approval? So at the end of it you would still be able to continue it?
08-18-2008, 02:10 PM   #13
BWS1982
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It's been 7 days since my first shots (come in pairs), but still no discernable difference off track from the standard fluctuation of the disease that I can say IS from the Cimzia and not something else. Some frequency has come down some, but like I said, I don't know yet if it's the disease waving or the Cimzia working, or the Actose, or what.

Good to know NZ is thinking of approving it, or so it sounds. Biologics are a decent category to use, unfortunately so far the one I've thoroughly tried, Remicade, wasn't really for me.
08-18-2008, 08:44 PM   #14
vikingmonkey
 
Count me as another Cimzia patient. I get my first injection tomorrow. Like Benson, I was on Remicade and saw no difference in my symptoms at all. I'll try to post again after a week or so to see how I fare.
08-18-2008, 09:34 PM   #15
Isla
 
It always helps when people post their successes and failures!
08-31-2008, 12:30 AM   #16
BWS1982
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Well, I have gone 6 days after my second injection of 2 shots (standard), no welts for another time at all, I seem to tolerate it well. No reactions whatsoever...anyways, it's still a bit early to tell. I had another GI appt yesterday, and he wants to up my Actose to 30mg a day, if I'm okay with that increase, then also go up on my Sulfasalazine from 3g a day, to 4g a day....only if the Actose increase goes fine for about 4 days first though....

On the Tysabri front, I mentioned to him my reservations and almost distinct "no way" mindset on the Tysabri, after the findings and monotherapy, and he didn't feel I was being unreasonable or illogical, he accepted them. Dont' know one way or another if he was hiding his disapproval, or there was just an absence of it, but at least he seemed to respect it.

Also mentioned the potential use of prednisone and antibiotics again since I responded decently to them in the past, and he tried to say it's possible but brought up the point below.

He put a big emphasis on stress for me, saying that stress and sleep are a MAJOR factor, which I knew, but it's rare for me to talk much about it with docs, just with loved ones or here...my mom was there for it too. He brought it up partly I think because I continually have shown a "well what do we do if this med fails me like the others" and he noticed it and wants to put a stop to my pessimism (I just heard Isla cheer)....about the disease and all the failed attempts...wants me to not even think about the what ifs, says he wants me to convince myself that "this treatment will work, and what do I do WHEN IT DOES WORK"....positive thinking, Dr. Phil, the whole thing, you know....I hope he puts that in the notes so the confounded disability people see it and realize it's possible their incessant shortsitedness

Also said sleep, sleep as much as I feel I need to, which is a relief to hear since I would like to justify my 12 hour a day sleep inclinations and/or habits. And hopefully this will get my parents to get off my back too on both aspects. The doc even mentioned his mice and said when his colitis infected mice (he's a big time university doc) get insufficient sleep, it shows majorly, and the same evidence is present in humans too. I've always noticed this, I have to wake up early, and my bowels go apesh*t...

I really hope Cimzia is my thing, and I've got more reason than ever to think positive.
09-03-2008, 07:18 PM   #17
AbstractDonut
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Guys update regularly plz. Also what does everyone have against methotrexate?
09-03-2008, 07:30 PM   #18
BWS1982
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It's kind of nasty stuff from what I've read, bad sides, kinda toxic, along the lines of Imuran/AZA, but it's only good if it's benefits outweigh the risks...like any med.
09-11-2008, 02:07 AM   #19
BWS1982
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Well, couple days after my third one, the final one in the loading phase, now I go to 4 week injections. I'm glad I have a constant nurse too, she's nice and well versed.

Still, a MINOR decrease in BM's, SLIGHT increase in quality, and a SLIGHT decrease in fatigue....all over the last month and a half or so. But, I also started taking my probiotic pills too, as well as some Ginger, not on doctors orders, but out of desperation.

Cimzia's company, UCB, also sent me this nice green binder with it's logo, sure it's probably advertising material for them, but I don't care, it was at no extra cost and I like it a good bit, gonna use it for medical purposes (I could use it after this mess).

Also, again had the injection in the thighs, only because I have been tolerating it alright thus far, otherwise she'd be doing the stomach with one leg each time, alternating....I don't want a belly shot though (that sounded odd, if you read it another way).
09-11-2008, 11:12 AM   #20
Isla
 
Hahaha belly shot, ya I thought of a hot chick's belly button filled with alcohol
09-11-2008, 05:16 PM   #21
My Butt Hurts
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Yeah, you probably shouldn't do belly shots with your nurse.
(Well, that depends on how hot she is!)

Who wants to do a belly shot off a guy anyways? All that lint in there...

Hey Benson, at least all of those SLIGHTS are something, right? Hope it improves a bit each time.
09-11-2008, 07:16 PM   #22
BWS1982
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Yeah, the slights add up to something in sumation.

I have no lint in there.

I probably shouldn't comment on the nurse part, these forums aren't password protected.
09-11-2008, 07:57 PM   #23
pnp26
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I have been on cimzia for the last few months and I am done taking cimzia. I have failed on remicade and all other medicines. The only thing that seems to work for me is steroids and you can't live on that. I am about to start humira instead of cimzia and my doctor wants me to do the humira injections weekly instead of every other week. Cimzia was easy for me to reconstitute because I am a nurse practitioner and I am use to mixing medicines. The solution was very think going in and took about 30 seconds to do each injection. I am currently on Pentasa and 20 mg of prednisone because I recently had a flareup but I am slowly getting off of it. I am hoping that the humira works better than the cimzia. The one thing that seems to help me a lot right now is the SCD diet I have been on for about a month. I feel that there is some truth to this diet and I hope with the humira once I get off the steroids I will be okay. So I was a patient of cimzia but no longer
09-11-2008, 08:11 PM   #24
My Butt Hurts
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Benson, are you protecting your answer from your nurse or from your girlfriend??
OOO! Looks like Benson's nurse IS hot!

Jeez, my husband has had so much lint in that belly button he could open a sweater store if he put it all together.
09-11-2008, 09:21 PM   #25
BWS1982
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Forgot a third possibility, maybe she's not so hot and I don't want anyone seeing me insult her....could be any 3...it's a mystery.
09-19-2008, 09:55 PM   #26
vikingmonkey
 
Sorry for going into ninja mode for a while, but I'm in the process of moving and that's taken up quite a bit of my time. I just had my 3rd treatment, but I'm still taking mesalamine enemas (maybe the people who make those and the people who make Asacol will get together and make a nasal spray - medicine in every orifice!) so I don't know which is helping. Been feeling good, it'll be nice to see which is helping (when I was on Remicade, it turned out the enemas were what was helping me, so I'm hoping no repeats).
09-22-2008, 02:03 PM   #27
BWS1982
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Had a slight reduction again in BM's a day, a few days here and there in single digits I believe, and had 2 nights in a row without one time getting up to go (was at a point where was up a good 4-5 times/night). I did add Ginger extract and Probiotics to my regimen, so I'm not sure if Cimzia did it, if it's a fluke, or if it's one of my own amendments, but frankly, I don't care, I'll keep up that formula out of pocket (the supplements I added) just to keep improving.
09-22-2008, 08:32 PM   #28
My Butt Hurts
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Not getting up to poop in the middle of the night is a GREAT sign!
Keep doing what you're doing. Who knows what it is - who cares.
That oughta feel nice finally.
09-24-2008, 02:13 AM   #29
BWS1982
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Thanks, the last 2 days weren't as well, but there weren't worse than before the improvement. I'm almost ready to add the Kelp I have sitting in my room too, a Crohnie I know of takes it, works well for him.
09-26-2008, 11:48 PM   #30
BWS1982
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Had another GI appt today, am shaking from anxiety almost at the thought of not only more approval from disability's brilliant thought processes, but the looming onset of Long term disability encroaching, they're another company, not mine, and they are in the industry to do one thing: make money, deny genuine needs.

I'm posting though because I found (and hope this will add to the miniscule info on Cimzia we all know) that it's possible to be upped to 2 injections per 4 weeks if the maintenence amount of 1 per 4 fails to do much in the coming weeks. Good to know, but makes me afraid if insurance says 'nope'.
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