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Crohn's Disease
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Posted 9/1/2008 1:11 AM (GMT 0)
I am sure this has been posted! Unfortunately, I have not been on for a while, so sorry if it has been asked already:). I would appreciate some feedback if any of you could help- the more the BETTER!

I would love some input on CIMZIA. I am getting really close to having to meet with surgeon's even though my Crohn's is everywhere and very severe. But no one can help me @ all, even the MAYO. Cimzia may be an option even though Humira and Remicade didn't work. So I have done some research but now I want to hear from you, the Crohn's patients that have been on it or that are on it who it has helped. And of course the side effects, if any.

Thanks so much,

LOVEPINK
Posted 9/1/2008 5:10 PM (GMT 0)
Kasper87:

 

How thoughtful of you to help me out.  Thanks so very much!

 

It is great to read some positive stories about CIMZIA.  I have been on everything like I had mentioned before and literally nothing has helped.  Doctors are desperate and don't know what to do. 

 

Since my Crohn's is literally EVERYWHERE except one spot, part of the anus surgery is really not an option.  But my Gastro did mention to meet with a surgeon.  It is on my list but of course I am procrastinating because nothing about seeing a surgeon is NOT scary, you know?!  It is one of those risks that I am not sure I am ready to take.  The risk of surgery (which would be taking my colon out) and not getting better OR staying better for only a very short time.  I wish we all had more answers.

 

At this point I am really my own doctor as no one can help me.  I am on a steroid taper but that is it.  Well along with some vitamins, probiotics, etc.  Some pain meds here and there, Benadryl to help me sleep @ night and some nausea meds. when needed.  But I really try not to take pain meds if I can avoid it, but we know how that can be. Hospital visits are killing me.  But it gets to the point that I have no choice with the severe pain, bleeding, D 40 times a day etc.  Sorry......... I am venting.

 

My doctor did mention possibly trying CIMZIA. But my whole thing was, well if it is just like Remicade and Humira, then why would it work for me?! I try to have a good attitude but it has gotten to a point where that is hard as I am sure you understand.  Maybe I will look in to CIMZIA more and talk to more doctors about it and do some more research.  It just gets to a point where the possible side-effects are so yucky.  That is why I got off of the HUMIRA.  It stopped working right after my blood clot in my lung and then after trying to give it chance after chance, we decided to get off of it due to it not working and obviously the possible side-effects that come with it.

 

I will remember you when I have more questions which I know I will.  Again I really really really appreciate your help and feedback and the time you gave me:)

 

~ Brittany

 

How is CIMZIA different than HUMIRA for you?!?

Posted 9/1/2008 5:53 PM (GMT 0)
Perhaps it's time to ask your doc about going in a clinical trial. If you're still flaring and doing a taper you will just feel worse and worse, unfortunately. You need to go on something that will treat your disease when the steroid is stopped. Google Prochymal and ask your doc about it and other clinical trials he knows about.
Posted 9/1/2008 6:01 PM (GMT 0)
Fabulous, I will do that. However, I have been in several clinical trials and even been to the Mayo Clinic.  It is a bummer. But the one you mentioned (below) I have not yet researched, so I will do so now.  I will keep ya'll posted. It is amazing how nothing can help,  I just take it day by day hoping that a miracle drug or hey even better, a cure will come available. Thanks LOVEPINK
Posted 9/1/2008 6:04 PM (GMT 0)
Just researched this Trial and yes I have heard about it and actually almost got in to the Trial here in Seattle! But with all of the required radiation (before you begin the study) after having as much as I have had, the doctors were concerned. And then the fact that you have to be off of all meds BUT from what I know, I could be on a small SAME DAILY DOSE of prednisone while I do it from what I remember!!!!!!! I will look more in to it yet again though. Thanks so much- LOVEPINK
Posted 9/2/2008 1:50 AM (GMT 0)
Lovepink, if you go to the new meds thread you'll find a few threads on Cimzia, and I hope they'll be able to give you some additional advice. As you'll see, the last thread listed is this one: I thought your question and Kasper's responses were so great that they should be kept for posterity :-)
Posted 9/2/2008 2:20 AM (GMT 0)
Lovepink -- I was on a stable dose of methylpred while I was in the Prochymal trial. And, I did the trial out of Seattle... I wonder if it's the same office? If so, they are great, wonderful and supportive people. I cannot say enough positive things...
Posted 9/2/2008 10:45 PM (GMT 0)
I have taken the cimzia injection three times now...Now I will start having it done once a month. I do get two side affects.....Nothing bad though. When she gives me the shot on my stomach it makes it look like i have had a really big bandaide on, it turns my stomach very white. It looks like you had a big circle bandaid on and when you take it off your stomach is a different color....like very white...I have noticed since i have been taking it that my fingers hurt on only one of my hands...I guess I should say my joints...other than that I feel great....i don't have as much d. either...it's alot better for me....
Posted 9/3/2008 4:26 PM (GMT 0)
Angela, I got the same injection site reaction as you when I was taking Cimzia.  But, it's much better than the red itchy whelp I get from Humira.  Humira is not helping enough with the joint pain either and Dr. can't get it approved weekly.  I'm considering asking if I can go back on Cimzia, but my concern there is that I got it every 2 weeks on the clinical trial and the normal dosage now is once a month.  Kasper, do you find that it wears off before the month is up?  Thanks.

Posted 9/3/2008 5:06 PM (GMT 0)

Funny, I was going to ask the same questions about going on Cimzia.  I have been on remicade for almost two years. I had been getting the infusions at my GI office every 8 weeks.  For the second time in a row, the nurse practitioner who does the infusion (and works in the critical care dept of the hospital, so he is very competent) could not get a vein.  I am the only one he's ever had to turn away, since he felt he could not morally stick me more than 3 times.  Like last time, I have to go to the hospital to have it done.

My Gi dr. now recommends that I go on Cimzia, because he feels that at this point the remicade hasn't really made a big difference, and it isn't worth continuing due to the inconvenience of having to go to the hospital to have it done.  I had surgery to remove a stricture in April.  A pill cam shows that I still have inflammation, so apparently the chrohn's is still active. 

After suffering for 43 years, I am ready to try anything. I am sooooooo tired of the cramps, D, and pain of this DD.  I want to feel "normal" for a change.  Sorry for the pity party.  I appreciate the wonderful support I get from all of you.  Only you can truly understand my frustration.

Best to all.

Posted 9/3/2008 5:43 PM (GMT 0)

We are all in the same boat so really no problem about the pitty party @ all! Hang in there and keep me posted on the CIMZIA and if you go on it please. I am not yet on it, but really looking in to it. Maybe that is the answer OR part of the answer.

LOVEPINK

Posted 9/4/2009 6:39 AM (GMT 0)
This will be my second month taking the one per month maintenance dose (2 injections), and it hasn't helped at all. Not even a little. In fact, my Crohn's is now affecting my stomach as well, and possibly my small intestine, which I'll find out for sure on the 10th when I go in for a SBFT. But don't be discouraged, I was just diagnosed in April and have since been on ciprofloxacin, flagyl, imuran, and now cimzia. I think different things work for different people and they just haven't found anything that's right for me yet.

Post Edited (Fawn0209) : 9/4/2009 12:42:41 AM (GMT-6)

Posted 9/12/2009 10:09 AM (GMT 0)
I'm a little bummed that some of you are saying it hasn't worked for you but I remain hopeful. I just got my first injections on the 4th and am scheduled to go back in the 18th for my next loading dose. My nurses are amazing (the only reason I would even consider staying in this state lol) and one of them said that they have had some really good results with patients who failed Remicade (like me). They have 12 patients on it at the moment and all have done at least a little better. She did say that for a few who have had CD for a really long time and have been on every medication under the sun, it took at least 3 months before they started to see results. For those of you that it isn't working for...ultimately you know what is best for you but if you have had pretty severe CD or have had it for a really long time, it may just take a little longer for it to start helping you.

She said they don't recommend getting the shots in the arms but they can do it in the stomach or legs. I opted for the stomach so I wouldn't have to drop trau. I really hated it because I don't really have any stomach fat and the injection hurt and felt gross going in (I could feel a big glob of medicine go in and push upwards, but that could also be because she didn't warm it up enough I guess). Because it hurt so much, she did the next one on my side, closer to the back. That one didn't hurt as bad as the first so I would say to get the shots in a place where there is a little fat if at all possible. I'll be getting them in my legs from now on. I also had muscle pain with my injections. My lower back was pretty sore for the rest of the day and for most of the next day as well but it was bearable. That is the only side effect I've had so far, I didn't notice the band-aid thing that some have mentioned but I'm pretty pale as it is smilewinkgrin

Anyway, I just wanted to share my experience with it since its fairly new and there isn't a whole lot about it yet.
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