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01-14-2010, 10:52 AM   #1
hleeann
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Cimzia treatment

Has anyone out there been treated with the new drug Cimzia? I have been taking 2 shots/month since June and I would say it has improved the Crohns about 70%. The doctor says it should help much more and last for the full month, but it lasts for about two weeks.

I was wondering if anyone had been treated with Cimzia and then had experience switching to another medication. I think Remicade is the next choice.

Any ideas?

I take Cimzia 400 mg/month.
Hydrocodone 40-60 mg/day prn.
01-14-2010, 11:53 AM   #2
Nytefyre
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I think that I am going to start Cimzia on the 20th or very shortly thereafter. I'd like to hear what others have to say too.
01-14-2010, 07:49 PM   #3
slice
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I've been on it since July. It help my joint and fatigue issues probably 80 percent for maybe 3 out of the 4 weeks and much less so my bowels, specifically left sided colon/rectum. My doc says it's not unusual for lower gi stuff to be tough to treat without topical, so I do have to supplement with rowasa. I was doing well with this combo until the last month or so when I started losing response. Doc is currently battling with my insurance to get me a booster/reloading dose. If that isn't enough we will either try for the 400 every 4 weeks or try adding Methotrexate before moving on to another Anti-tnf (this is my first). He doesn't like taking patients off the Bios before it's completely exhausted in terms of dosing options, combo therapy, etc. because there are so few of them and once you go off you can't really go back.
01-14-2010, 07:50 PM   #4
slice
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I meant we might try for 400 mg every two weeks.
01-19-2010, 12:08 PM   #5
hleeann
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That's the reaction I'm having. About 70-80% better with Cimzia, but can't make it the full four weeks. A double dose might just do the trick.
01-19-2010, 03:27 PM   #6
Crohn's 35
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Sorry to Hijack alittle, are there any Canadians on this drug, if so how did you get it, as I was told it is still not approved here, and could be a last option.

Hope the double dose works for you Hleean, I had weekly shots with Humira, only lasted a few months.
01-19-2010, 03:48 PM   #7
saidinstouch
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Slice, just so you know, the only biologic they use to treat crohns you can't really return to is remicade due to its chimeric nature. Humira, cimzia, and tysabri are all humanized so the chance of an immunologic reaction to the drugs is essentially nothing if you go off of them. Your body thinks they are native antibodies so it never builds up antibodies against them in levels high enough to matter. If your doctor tries to tell you otherwise they don't understand the drugs that well and you should ask them to contact the rep for those drugs assigned to their office to be properly educated. It is bad when a doctor takes what is true about one drug in a class and broadly applies it to all drugs in the same class. Just because a drug is similar, there are differences in their structure and function that a prescribing doctor needs to know for each drug they work with.

On the topic of this post, I actually am splitting my cimzia doses so I get 200 every other week rather than 400 once a month. It is actually working out quite well this way and I have very good coverage throughout the month and my pain levels are keeping pretty low. If you aren't doing the injections this way, talk to your doctor and see if they think splitting the dose will help. You end up with the same amount of drug over time, this way you ensure some coverage of the medication throughout the month rather than having it gone by the 2nd week.
01-19-2010, 08:53 PM   #8
slice
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Thanks, Saidinstouch. I'm sure you mean well, but my doctor is considered one of the leading experts in the country for IBD. Without dragging his name into this (you've all heard of him and he's mentioned in almost anything you read about biologics) I think I trust him on this. Actually, the last person I would trust is a drug rep that is making a living off selling a drug.

Having said that, it's possible I misrepresented what he said by saying you "can't" go back on them. He never said you can't, only that he "doesn't like to" take people off and put them back on if he can avoid it. Obviously there are times when you need to because of infection or whatever. I do know that like Remicaid, it's not unusual to loose responsiveness to Humira or Cimzia. I'm not sure what is going on physiologically to make that happen but something is happening to make your body recognize and treat it differently. I do what I can to learn as much as possible about my disease but there are some things I just decide to trust the experts on. Thanks for your concern though.
01-19-2010, 09:38 PM   #9
crohns072009
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I am also on Cimzia and I noticed that it only last 2 weeks 3 weeks at most...wanted to change dose to every 2 wks but my GI doesnt think its necessary yet..
01-23-2010, 06:54 AM   #10
Nytefyre
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Nytefyre said:
I think that I am going to start Cimzia on the 20th or very shortly thereafter. I'd like to hear what others have to say too.
I am now going to be taking Ustekinumab. I wish you continued good luck with your treatment though.
01-25-2010, 11:53 AM   #11
Jer's Girl
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I am on Cimzia now and I love it. I split my dose too, and that has seemed to help a lot. It is the same amount, just spread out better. I would say that if the Cimzia isn’t working great at first; try to give it a chance before you try something else. I thought that it wasn’t working for me for the first few months, but it turns out that I just had a bad infection that was making me sick. Once that was cleared up, the Cimzia started working like a dream. It has improved my quality of life immeasurably. I am also able to eat a lot more foods that have been off limits to me for year’s thanks in part to the Cimzia. My energy has been better too.

Before Cimzia, I was on Remicade for about 10 years. It worked great for about 8 of those years, and I would definitely recommend it to someone who doesn’t do well on the Cimzia.
01-27-2010, 01:33 AM   #12
Juben
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I have been on cimzia for about 6 mo and noticed very little difference. I do not have the typical symptoms of diarrhea, etc.... but just flares of extreme cramps and sometimes vomitting, lots of swelling, very NOISY digestion, non-tolerance of any type of roughage, twice in the hospital since July (when diagnosed). I had an appt today and the dr feels that the cimzia / pred is not doing enough and I need surgery to remove the damaged areas. I have a appt next Friday w/ surgeon. Will stay on cimzia & pred until surgery I guess, he says if we go off of it he fears I will be back in the hospital with another obstruction. Anyway, glad to hear that the cimzia is working for some people!

....Praying for a cure....
01-27-2010, 12:40 PM   #13
acg101
 
I have been on Cimzia for just over two months, 400mg every 2 weeks.
the first 4 treatments did not do a thing. my SED rate was sky high and I was as close to surgery as I have ever been .... BUT treatment 5 and 6 broght my SED rate down by 50%, and although still very high I dont need pain meds and I function.
There are also some new meds in the pipeline, being tested as we speak so dont give up.
another thing that worked for me was getting on a gluten free diet. my pain level went down significantly.
I definatly recommend Cimzia!
01-27-2010, 05:04 PM   #14
metahi
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I too am on Cimzia - I had a flare Oct-Nov and was treated with Entocort and Cipro, which worked at getting my inflammatory markers down considerably CRP was 100 down to 6 in the beginning of December. My doctor put me on Cimzia for maintenance.

I just finished my last loading dose of Cimzia last week and I have noticed a difference. I am in the bathroom 1x per day and it is FORMED, something that never happens unless I am pregnant when my Crohn's goes away. It has also helped tremendously with joint pain that I never associated with Crohn's and always assumed it was an old field hockey injury.

Good luck!
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