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05-15-2011, 06:41 PM   #1
silvermander
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Cimzia Questions...

Is anyone actually on Cimzia for Crohn's around here? There's lots of talk about Humira, Remicade, Prednisone, etc, but I haven't really seen much on Cimzia.

Even funnier is that half the pharmacists in my area have no clue what it is or what it's for.

I started the wonderful Crohn's drug routine when I was 7, 30 years ago. I went through Prednisone, , a number of other steroids, Asacol, Flagyl, Cipro, 6MP, Imuran, Remicade, Humira and a number of other meds that I can't think of right off the top of my head, but I have tried every medication that has been approved in the USA for Crohn's.

Heck, when the information first came out they thought nicotine was good for Crohn's as well as Colitis. We put me on the nicotine patch, but back then (like when I was in high school) they only had one strength and all I did was barf. I actually had doctors tell me to start smoking because the downfalls of smoking wouldn't kill me as my life expectancy is so short anyway. Of course they found out nicotine is really bad for Crohn's. It took me almost ten years to quit.

I've also been told that I'm prime candidate for 'sudden death', just what you want to come home and tell your significant other!

Anyway, we've exhausted every other medication approved, so we're left with Cimzia, Thalidomide (which my GI won't touch), or that wonderful med that has that terminal brain infection/disease attached to it. So, Cimzia it is!

The problem is that I haven't heard anything from anyone on Cimzia. I also can't seem to get it. My insurance fought me getting it, but have finally approved it. But now my pharmacy can't get it. I'm trying to get it through the mail through the pharmacy my insurance uses. Being on disability I'm on Meidcare and MaineCare, so I'm at their mercy, but also have some extra avenues to get my meds. (I feel very lucky to have the medical coverage I have as I'm not able to work - have ended up under the knife every time I've worked a 'real' job. I got a print out of what my medications - just at home, not what I received in the hospital - and they cost over $25,000. On disability I don't make that in 4 years!)

As far as I know, no one has been able to get the Cimzia starter kit from the manufacturer. That makes me a little more than worried. But even worse than that, I don't have any clue what I'm in for going on this med.

Thanks for anything anyone can tell me.
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Diagnosed - Age 8, 1981
Small Bowel Resections - 6 - had a fistula and 6X8 abscess, as well as some small bowel removed - 9/2/11
New abscess, named Albert! 7/7/12
Prednisone - Way too much & never again!
Cimzia - Started 5/20/11, hoping for the best. Scared that it won't work, like everything else.
Humira/Remicade/Imuran/6MP/Flagyl/ect - Been there, done that & really should get the t-shirt!
05-15-2011, 07:29 PM   #2
poopaholic
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Hello, My doctor recently started me on cimzia. Tomorrow I take my third dose, the last of the initiation doses. I don't really have anything to say about the drug yet. I have had no side effects negative or positive. Still trying to stay optimistic about it. I think there are a few others here on cimzia. Hope this helps, me and you.
05-15-2011, 07:46 PM   #3
Crohn's Mom
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Hi there..

My daughter actually just started Cimzia this past Friday.

I guess i can't really give you any negative or positives either way, but just wanted to let you know there are some out there on it!

The only thing that we have noticed so far is that she was very tired the first 2 days, but extra naps took care of that. She seems more energized today.
She said the first evening that she felt terrific and normal! Always a good sign

Best of luck to you on getting your insurance to approve it.
We didn't have any issues getting coverage and only pay a $35 co-pay.
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05-16-2011, 08:28 AM   #4
bwightman
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Hi there....

I started Cimzia in February. It seems to be working for me so far...I definitely feel much better now than I did before starting it. I get Cimzia mailed to me every month from a specialty pharmacy. I don't think you'll be able to get it from someplace like CVS or Rite-Aid. But I did get the free starter pack from the manufacturer...I'm not sure why this wouldn't be available to you. They also have a program set up to help with your copays if you're eligible. You might want to actually call the Cimzia hotline (I think they call it CimCare). I'm sure they'd be able to help you and let you know what options are available to you. 1-866-424-6942

Good luck!
05-17-2011, 06:02 PM   #5
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I also get my Cimzia shipped via specialty pharmacy. Places such as Walgreens and CVS don't carry it. I would contact the company directly at 866-4CIMZIA or go to their website Cimzia.com to get some help with the shipping. I never had any issue receiving it.

Cimzia worked GREAT for me for almost a year and it has since started to fail. My next step is a clinical trial for people who have failed TNF blockers.



Edited to add: I bumped up the "Cimzia Club" topic for you. Hopefully it'll give you a little more info. Feel free to ask me if you have any questions.
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05-17-2011, 06:13 PM   #6
Crohn's Mom
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I just wanted to add that Walgreens (at least the Florida ones) does carry Cimzia. No, it is not kept on the premisses as a (staple) drug, but it only took 3 days after we submitted the prescription to get it in.
05-17-2011, 06:18 PM   #7
ThanksP
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It definitely comes quick. I can call Curascript (in Delaware) on a Monday morning and have it on my doorstep Tuesday. I suppose the quick shipping is because it has to be kept cold, which isn't so easy depeding on the season.
05-17-2011, 08:02 PM   #8
silvermander
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Well, my insurance has approved it!

It turns out that my pharm can get it, but can't get the starter pack for some odd reason that even they don't understand.

I set everything up with their pharm, had my doc call it into them as they couldn't transfer it from my pharm, even though they transfered my Humira from my pharm without my consent previously. I have no clue what all that was about.

Then today I got a phone call - which I missed because my phone was charging and I was in the loo, shocker! So I called them back and they just wanted to confirm my address. This was after the kids were home, so it had to be about 3pm, and they told me I'd have it on my doorstep tomorrow. I'm pretty impressed with that.

From what I'm reading I think I'm going to wait until Friday to start the injections as I'm going to be working in an (small) amusement park all day Thursday and Friday. The last thing I need is to drive two hours and end up having to crash at my father's house because I'm too whipped to work. Yeah, last thing I need is to stay with my father. So I'll play it safe and start it when I can be home and the love of my life isn't at work and can keep and eye on me.
05-17-2011, 08:09 PM   #9
Crohn's Mom
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Great News ! So glad your insurance approved it!

And it's probably a really good idea to wait until Friday to start the injections. Gabs extra fatigue only lasted off and on for the first two days, but when it hit, it did hit hard and she went right to sleep. She's at 4 days post first injection and her energy today is beyond expectations...she's bouncing around like she drank a few Red Bulls! LOL (we love seeing this!)

Best of luck to you! I hope it gives you some amazing results
Please keep us updated
05-17-2011, 08:19 PM   #10
ThanksP
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The day after has always hit me hard. I always get very fatigued and achy so I try to plan the next day to be nothing but laying in bed. I also find that taking Tylenol Arthritis the night of my injections helps the achiness.

Do you have a nurse coming by to teach you how to do the injections? If not, I'll tell you one thing to watch out for when doing the injections. I remember my nurse telling me that if anything seemed out of place with the medications, DO NOT USE IT. Two months ago, I had a defective shot. The first one was fine, but the second one was cracked. I couldn't see the crack, but no matter how much I tried, I could not get the air bubble completely out. It was a simple fix. Just called Cimzia and they sent me a new set two days later. Oh, and make sure you leave the shots out for at least 30 minutes prior to using them. If they are still cold, it will burn more. And don't try to force the medication in. It takes a little bit since it's more of a gel substance. If you do, it'll sting more and some meds will leak out.

Good luck to you, hope Cimzia is the answer for you!
05-18-2011, 07:58 AM   #11
bwightman
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Silvermander,

I'm not sure why you wouldn't be able to get the welcome kit either. I will say that when I started with Cimzia, my doctor contacted the drug company directly, so the welcome kit I received was a "free trial" and my insurance company was not billed for this, so my loading doses (first three doses) were free. One of the nice things about the welcome kit is that it comes with an insulated cooler bag that you can use to keep your meds cold if you're traveling. It came in handy for me since one my loading doses fell during a week that I was away from home. I'm sure if you call the Cimzia hotline though they'd be happy to send one your way, along with a sharps container if you haven't already requested one. I've been really pleased with the support I've gotten from the Cimzia hotline for things. They call every month to check up on me and to make sure the medication is still doing its job.

I hope Cimzia works for you! Good luck and let us know how it goes!
05-18-2011, 09:07 AM   #12
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I previously was on cimzia for about a years time until I found it lost it's ability to help control my crohns.
While on it the only real side effect I noticed was for approx. 48 hours after receiving the injections I was very fatigued. This seemed to get worse over time as well.

Hope it helps you.
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05-19-2011, 12:59 PM   #13
krs2
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I have been on cimzia for about a month now. It took about 2 weeks of calling my doctor, cimzia, 2 pharmacies and my insurance company but i finally got it. A nurse at my doctors office gives me the shots. Im supposed to do it myself but i cant bring myself to stab my legs once a month. It took another 3 weeks to get the 3rd dose and i almost gave up but finally got it a week late. Its tempting to just give up because we dont need the frustration when were sick. Good luck.
05-21-2011, 10:19 PM   #14
silvermander
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Well, I started the Cimzia.

I waited two days after I got it in the mail. I had two days of heavy work to get through and didn't want something to keep me from it. But I brought it with me and my father gave me the injections.

I'm glad I knew ahead of time that it's thick or I'd have really tweaked out. But he injected me and all seems well. I'm really tired, but I don't know if it's the Cimzia or the two days of working my bum off!

Now I'm playing the wait and see game!
05-22-2011, 12:28 AM   #15
ThanksP
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Best of luck, hope it's miraculous for you!

First time I tried to explain it to my dear friend, she thought it was like an insulin injection (1-2-3-GO). Bless her heart, it's more like trying to inject maple syrup, outdoors in January, in MAINE (1-20-30-40-SLLLOOOOWWWWW).
05-22-2011, 02:09 PM   #16
silvermander
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Okay, the funniest part of the maple syrup in Maine is that I am in Maine and my father compared it to maple syrup when he injected it.

Actually, my father said he was up for giving me the injections as he'd injected a diabetic friend of his. He told me 'half way through' at one point and I asked if he could hurry up. He said no, no he couldn't.

Dad was really great with my injections and I might go back and see him in two weeks if I don't have any other appointments with docs around that time.

I was kind of surprised at how little Cimzia hurt compared to Humira. Also, it's a little gross how it kinda sits under the skin the way it does. I keep slapping my legs to get my service dog up and hurting myself doing it. Plus he sleeps on my hip at night, right on one of the injections sites, not the most comfortable, but I am still too tweaky to inject in my belly.
05-24-2011, 04:48 PM   #17
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I find the injects in the belly hurt way less then the legs. One thing that I noticed also when I first started was the first month or so I had some side effects but then by the end of the second month they all went away. I do still feel fatigued the day after the shots but other then that its smooth sailing for now. my only down fall is myself. I feel so good I forget sometimes I cant it that and I do and then I pay for it but nothing like before, since the start of Cimzia its now like a few hours of pain instead of a week of Hell.

Good luck and I hope it works for you.
05-25-2011, 01:17 AM   #18
Beast2351
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I've been on Cimzia for a while now, and it's been working pretty well for me. I was surprised by the lack of Cimzia posts on the forums too.

I have been on a lot of medications for Crohn's, the most recent one prior to Cimzia was Humira, which had been working pretty well, except i would get extremely bad intestinal spasms the night after my injections, so then by recommendation of my doctor I switched to Cimzia. Since i switched I've only gotten those bad spasms once (knock on wood that it doesn't start happening more frequently now).

If you have any questions I'd be glad to try to answer them to the best of my ability since I've been on Cimzia for a while now.
06-23-2011, 05:22 PM   #19
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Hey do you think there will ever be enough Cimzia people to warrant us a Cimzia Club sub group like the rest of the TNF'ers ? LOL
06-25-2011, 09:08 AM   #20
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I was on Cimzia for a little over a year, then off it for 8 weeks for a resection surgery, and now have been back on it for about 6 months. ( I also have been on Remicade, Humira, 6MP, Imuran, Flagyl, entocort, pentasa, prednisone, etc.)Cimzia seemed to help some initally, which I only really noticed because about 2 weeks after injecting, with 2 weeks to go until my next injection I would start to feel worse and worse until it was time to inject again. The last week before I was due to inject was especially rough. So, my doc doubled my dose to 2 shots every 2 weeks for about 6 months until my disease was so out of control I had to have surgery. With the dose doubled I definitely noticed an increase in side effects as well. On the reccomended dose I would inject, then get a terrible headache within the hour, then usually go to bed and sleep through the night and half of the next day, then wake up with a slight headache and tired, but by day 2 post injection be my normal self. With double to dose I would have what i call my 'cimzia headache' almost daily, and felt extremely fatigued. Also, although the doctors haven't confirmed my suspicion it was due to the doubled up cimzia, I started to have nerve issues. My arm and hand would randomly twitch, and my 'funny bone' became so sensitive that even resting my arm gently on any surface would be painful and feel like when you accidently hit your funny bone, but wouldn't end and I wouldn't be fully in control of my arms movement for an hour or so. Funny thing is, when I stopped the double doses, all of the nerve problems stopped as well. Also, I was losing a lot of hair. As soon as I would start to feel normal, i would be due to inject again.
Since surgery I am back on the regular dose(2 shots once a month) and can't really tell if it's helping or not. The good news is I'm not really noticing the side effects as much. I basically just get a headache that night and can sleep most of it off and wake up the next day a little fatigued but not too bad considering. My conclusion; Cimzia has a reccommended dose for a reason and if anyone out there has it reccomended they try 'doubling the dose' think twice about it and weigh the side effects carefully. At least at the reccomended dosage this medication seems to not be so bad.
The next step for me is to add methotrexate to the mix. I am going to be kept on Cimzia along with the methotrexate, and I am on 40mg prednisone, which will begin to be tapered at 5mg a week after I've been on the mthx for a little while.

Silvermander- I'm kinda in a similar situation to you. My only remaining options are methotrexate, and the one that causes brain problems (tyrasabi i think it is?) The good news is, I recently drove across country to see my Mayo Clinic doc, and she said they are having clinical trials for a drug that is 'like a cousin' to the tyrasabi, that isn't having the brain effects that tyrasabi does. She said it is 'working like gang busters' and she is very excited and optimistic it will help all those out there that have not had success with all the other drugs. She reccomended I join the trial, but I decided to try my other last option the methotrexate first and give that new drug a little more time to be studied first. If this doesn't work, I might go that route however.Maybe there is hope out there!!
Good luck with the Cimzia! I hope it works for you!
06-25-2011, 05:06 PM   #21
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I was on double doses and never noticed any difference or side effects. Unfortunately, the double doses did not work for me either.
06-27-2011, 01:30 PM   #22
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Does any one else experience "cold/flu" symptoms within the first 2-3 days after their injections ?
06-27-2011, 02:23 PM   #23
ThanksP
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Does any one else experience "cold/flu" symptoms within the first 2-3 days after their injections ?
I ALWAYS did, but usually only the first day after injection.
06-27-2011, 04:19 PM   #24
silvermander
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I've taken the three sets of loading doses, then this week things got very strange. Okay, more like last week.

I am usually in the bathroom a number of times a day, major D. But twice recently I completely stopped going. It was 4-5 days, then everything emptied out and not in a painful way and was quite soft. Then this happened again leading to today when again everything voided from my system.

While this might be 'normal' for some, it's not for me and is incredibly uncomfortable. The first day is fine, the second day okay, but after that I'm so uncomfortable I'm about to cry. I popped some laxatives, but they didn't do much.

Also add in that I'm dealing with a partial blockage and I keep tweaking out that I'm totally blocked.

My pain levels are through the roof - unless I'm sitting - and know things are quite bad in there and will be seeing my GI next week if I don't end up in hospital first, but this poo thing is really not cool!

And yes, I still get that metallic taste for the first 3-4 days after every shot.
06-27-2011, 04:26 PM   #25
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Im sorry you're feeling so badly Silver

Not trying to scare you, or freak you out more, but...I believe I have read here on someone's Cimzia post about how quickly it works; so quickly that it can build up scar tissue and cause blockage ?
I'm remembering this because you say you already are dealing with a partial blockage, so I wonder if this could be happening with you ...
Hmm...I think I'm going to try and research a bit....
06-27-2011, 04:32 PM   #26
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It's on the first page of the Cimza Club thread...I don't know how to link that for you
06-27-2011, 04:36 PM   #27
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Cimzia Club

Dusty. xxx
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06-27-2011, 04:38 PM   #28
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thanks show off ! LOL
06-27-2011, 04:40 PM   #29
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My pleasure...

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06-27-2011, 06:54 PM   #30
silvermander
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Yeah, Dusty's being a showoff again!

Actually, I doubt it's the scar tissue caused by quick healing as I have been struggling with this partial blockage since Christmas 2009. It's been back and forth. I eat something with fiber - piece of orange, KFC apple pie, IHOP pancakes with fruit - and back in the hospital for a week on bowel rest. Yes, those are the specific foods that put me in the hospital. I don't remember what set it off the first time.

Now, we're thinking that this is more mechanical than inflammatory, so it could be Cimzia's 'helping' has added scar tissue to the whole thing and making it as bad as it is now. It is something to think about.
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