# From Remicade to Cimzia



## CrohnieCarolyn

Anyone changing from Remicade to Cimzia?  I am waiting for the Remicade to get out of my system then on October 6th I start Cimzia.  The Remicade was doing wonders until I started developing terrible joint pain and swelling.  Hoping and praying the Cimzia works as well as the Remicade did without the joint pain...Anyone experience this terrible joint pain?


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## My Butt Hurts

I haven't used Cimzia, but I did switch from Humira to Remicade and made the transition very well.  I don't even know if ANYone on the forum is using Cimzia at the moment.  I honestly can't think of anyone who is, but maybe they will chime in and share their experiences with it.  We'd LOVE to hear how it works for you though!
Welcome to the forum!


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## kjhngisd

My Butt Hurts said:
			
		

> I haven't used Cimzia, but I did switch from Humira to Remicade and made the transition very well.  I don't even know if ANYone on the forum is using Cimzia at the moment.  I honestly can't think of anyone who is, but maybe they will chime in and share their experiences with it.  We'd LOVE to hear how it works for you though!
> Welcome to the forum!




My wife started Cimzia about a month ago. 
No negative side effects yet. But she's been fighting with infections all year, so not so much benefit yet either. 

Just a note.. those shots are .. wild. 
Cimzia is very thick and takes quite an effort to even get it in-- it's not bad, but a little disconcerting if you aren't ready for it. The nurse who gave the injection actually called the manufacturer as soon as she got done. Their response was  basically to tell her that she did it right.


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## CrohnieCarolyn

Shantel said:
			
		

> WELCOME Carolyn!!!!  I do not have the joint pain, but have other stuff they think may be Remi related.  Hope the Cimzia does a better job for you without these side effects.  Please keep us posted!  Hey - at least you don't have to be tethered to an IV anymore right?
> 
> There is a thread here called the Remicade club - you should post to the end of it what your problem is, and that you are switching to Cimzia - just for others to note.
> 
> Thanks Shantel - Yes, looking forward to not having to sit in a chair for 3 1/2 hours every 4 weeks...and I will check out the Remicade thread....


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## CrohnieCarolyn

My Butt Hurts said:
			
		

> I haven't used Cimzia, but I did switch from Humira to Remicade and made the transition very well.  I don't even know if ANYone on the forum is using Cimzia at the moment.  I honestly can't think of anyone who is, but maybe they will chime in and share their experiences with it.  We'd LOVE to hear how it works for you though!
> Welcome to the forum!


Thanks "My Butt Hurts"  Like your handle...lol Ahhhh remember the days when our butts didn't hurt?  Been so long I can't remember.  I think Cimzia is fairly new - we shall see how it goes - my biggest fear is getting a flare-up of course or side effects like this awful arthritis from the Remi...I'm too old for this crap!  No pun intended...
Pat Sayjack...I'd like to buy a vowel...


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## Dawn

I was on Remi in 2001 and like to refer to it as "The Golden Egg". I thought it was wonderful and was heart broken when my GI told me I had built up antibodies to the med and could no longer take it without the risk of going into anaphylactic shock 

I am currently on Cimzia and my personal experience is that I'm not impressed. I had my most recent resection December 2008 and am already in a flare. This is currently being coupled with Pentasa.

BTW...This is my first post and I am super excited to be here!


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## CrohnieCarolyn

Shantel said:
			
		

> WELCOME Carolyn!!!!  I do not have the joint pain, but have other stuff they think may be Remi related.  Hope the Cimzia does a better job for you without these side effects.  Please keep us posted!  Hey - at least you don't have to be tethered to an IV anymore right?
> 
> There is a thread here called the Remicade club - you should post to the end of it what your problem is, and that you are switching to Cimzia - just for others to note.
> 
> Again...WELCOME!


Thanks Shantel - I'm trying to figure out what I'm doing on this site..but I shall get the hang of it - what other stuff do you think the Remi is responsible for?  I have crazy mood swings - my husband wonders what I did with his wife lol ANd I cannot sleep!  4 or 5 hours a night is it and then I am up and ready to start my day - exhausted of course...Anyway, such fun and games of the crohnie crones..


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## My Butt Hurts

Shantel said:
			
		

> ... and I have this acne/rash thing on my chest and back that the dermatologist attributes to the Remi....    I also have a nose thing, like allergies


Me too Shantel.  I've never had more than the occasional pimple my whole life, (Except for with pred) and now on remi I have the joys of acne.
Also - I feel like I have allergies and have never had allergies before.  I even had my first bloody nose since starting Remi.
Mini Cooper said the same thing about the acne and the nose, and she is on Remi too.

EDIT - Wowwie.  Old thread.  I thought I would edit this because I am still on Remicade and I am not having problems with the acne now.  It must have been the Imuran which I am no longer taking.


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## Sierrasryder

Hi,

About six or so years ago I was on Remicade and it did wonders for me, but after about 3 yrs, I began having horrible joint and muscle pain about a week and a half before my next infusion.  The very night of my next infusion, the pain would be gone!  Until that time, I never had any trouble with my joints.  Now I'm plagued with joints and muscles that hurt terribly, making me feel like an old lady.  I began Remicade again two weeks ago (go tomorrow) and again the joint pain was gone the first night - very strange.  My dr put me back on Rem because I have very active Crohn's again and have lost about 13 lbs since May.    

Anyway, the dr thinks the Remicade may have caused all the joint trouble as I never had any problems before that.  I know alot of folks are affected when they're younger, but I never was.  Just one more thing to add to list, LOL.  Oh, they put me on Humira, but after a year I ended up with another resection.  No luck with Humira.  I sure wish you well with the Cimzia.  Please let us know how it goes.


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## FaithNPrayer

*Joint pain*

I have had joint pain in the past with my crohns but after coming off of remicade, the joint pain came back so severe; like someone said earlier ( I feel like an old woman), seriously. I refuse to go back on the remicade unless it gets to the point where I just cant take the pain. I'm having a flare up now; the remicade was causing other ailments as well. I'm just watching what I eat and eating alot of antiflammatory foods; seems to be working somewhat.


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## JCB

Having to come off Remicade for financial reasons.  Will be trying Cimzia.  I'll post results.


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## brenda1

I have been taking cimzia since Jan. It worked great for me. Before I started on it my joints were horrible, I could'nt hardly move or get out of bed or even sit down, but after starting it has gone away, it started working hours after my first shots. I am still on it and I take it once every 3 weeks, I still have urgency and when it gets about 4 days before the shots are due I go to the bathroom more but I am still very happy with it. Iv'e gone from going 20 or more times a day to maybe 3 to 6. I hope you have good luck with it as well.


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## JCB

Glad to hear some good news about Cimzia.  Some of the posts sounded as if I might be making a mistake by switching.  I was on Remicade once every 8 weeks, and by the 7th it was pretty much wearing out.  I know what you mean about the trips to the bathroom.  If I had money 9 years ago I should have invested in Angelsoft or Cottonelle!  Remicade worked well for the most part.  Hoping Cimzia does too.


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## JCB

FINALLY got my first injection of Cimzia today.  I chose the abdomen for my first time and there was some pain around one of the injection sites.  And I am experiencing some aching pain in my hip and upper thigh on that same side.  So far no other side effects.  Was very tired about 2 hours afterwards, but since I'm pretty much always tired anyway, I'm not sure that was entirely the Cimzia.  More posts to come.


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## Dexky

Good luck JC!!  You don't have to dig up a year old thread to tell us though.  Just start a new one!!


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## sickofitall

I switched from Remicade to cimzia in September because of horrible joint pain.  So far so good, joint pain is steadily decreasing.  However, I just had a shot 1 and half weeks ago and its wearing off.  Maybe once I get a few in me it'll level out.  Good luck for u guys!


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## don1jones

I took my first CIMZIA injections yesterday. Nurse gave me one in stomach area and one in the thigh. It did not hurt at all. So far I have had no side effects. Can't say when it will help or if it will help. But I have never had any of the meds similar to CIMZIA. Medco has been great. Told me a lot more than my doctor did--which was zero. I am very fortunate compared to most people on here. But --  this disease is tough at any level.


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## Junkie

Hi Carolyn, I am actually in the same situation. I was on Remicade for a little over a year for Crohn's until it started failing and i was taking the highest does at the shortest period of time possible ( i never experienced joint pain though). My doctor then recommended a sister drug called Cimzia. At first i was a little weary of taking a drug that i had to inject myself. Needless to say i have been on Cimzia for about a year now and am coming up with the same results. My prescription is for 2 pre-filled syringes every 28 days and for the first 4-5 months i had no symptoms for the entire 28! I thought "finally a drug that is working!" But in the last 4-5 months i have been getting sicker earlier before my dose. I am currently looking at more homeopathic solutions but i really hope the cimzia does the trick in your case!


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## slice

Junkie, I went through similar thing after 6 mos of Cimzia so they upped my dose to 400 mg every 2 weeks. That helped a lot for another 8 mos or so, but recently there have been problems again. We're currently discussing adding Methotrexate to the mix but I'm not quite ready to make that leap yet.


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## Poppysocks

Did you guys gain weight on the cimzia? I've heard you can lose your appetite.


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## Junkie

Slice, that's what i fear will happen in my case. I was so relieved when the Remi was working for the first couple months and when i started having to up my dose it was a real let down. I don't want it to happen with the Cimzia but i fear it might be my only option at the moment to buy some time. Also, Poppysocks the only drug that has affected my weight drastically is Prednisone seeing as it is a steroid. Cimzia shouldn't "cause" weight gain or loss but it definately hasn't made me lose my appetite. Hope that helps.


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## abbyt00t

*Cimzia*

Hi all. I am currently on Cimzia. Was taking Humira but it made me feel like a train wreck for a week, then I had a good week, then time to dose again. Was excited about Cimzia due to the 1x a month dosing. Went in with the idea that if I felt like crap for a week that meant 3 good weeks.. Rightttttttt....
Seemed OK for the first 2 months then after about 3 weeks symptoms were coming back with a vengence.. Did this for 2 months & the doc decided to double my imuran dose...Hasn't helped.Now I am just not seeing benefits at all. As far as joint pain goes... terrible joint pain. But everyone reacts differently. I am at the point, along with my husband being in agreement that a bag may be the way to go. Actually head to the doc next week to discuss this. I have taken Remicaide, Asacol, Humira, Imuran, Cimzia and Pentasa , pretty much none have completely worked.. I have had one resection surgery. My crohns isn't partial to one area.. I have had active ulceration in my mouth, throat, stomach, small bowel & colon , not to mention the rectum too. Has anyone had the "pleasure" of a peri-anal abscess yet ? So far I think that those are the worst....


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## dvation

Carolyn, just wondering how you're doing!?

I've been a long time lurker of these forums but just became a member to post in this thread because I'm in the same boat as you. I was on remicade and had the typical allergic reaction: painful joints, rash and fever. Went on steroids and benedryl and got through it but now the doctor wants me to go on Cimzia. I'll be starting soon and was wondering if you had any problems.


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## SueBee

I'm glad to read that I'm not alone with joint pain with Cimzia (but I'm not glad that any of us have it!).  I started Cimzia 4 months ago and recently my elbows and arms have started hurting.  Cimzia helps somewhat with my Crohn's, although it's not as good as other drugs have been; I take Pentasa also, and both together seem to do the trick for the most part.  I was on Humira last year and it worked great, but I developed joint pain, swelling in my feet, and tingling in my hands and feet, so my GI thought I should go off it.  I even had more energy and felt better overall when I was on it.  Before that I took Entocort and Pentasa, which also worked with very few side effects, but the Entocort contributed to developing osteoporosis -- a big side effect.  I'm thankful that drugs help me, but it would be nice if they could find one with no side effects.
I'm glad I found this forum!  Does Tylenol help with the joint pain?


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## jami

Sierrasryder said:


> Hi,
> 
> About six or so years ago I was on Remicade and it did wonders for me, but after about 3 yrs, I began having horrible joint and muscle pain about a week and a half before my next infusion.  The very night of my next infusion, the pain would be gone!  Until that time, I never had any trouble with my joints.  Now I'm plagued with joints and muscles that hurt terribly, making me feel like an old lady.  I began Remicade again two weeks ago (go tomorrow) and again the joint pain was gone the first night - very strange.  My dr put me back on Rem because I have very active Crohn's again and have lost about 13 lbs since May.
> 
> Anyway, the dr thinks the Remicade may have caused all the joint trouble as I never had any problems before that.  I know alot of folks are affected when they're younger, but I never was.  Just one more thing to add to list, LOL.  Oh, they put me on Humira, but after a year I ended up with another resection.  No luck with Humira.  I sure wish you well with the Cimzia.  Please let us know how it goes.



I was told, once you got off remicade you cant go back on it??  Anyone know something I dont?  I was on it for a couple years and was having the same symptoms as you guys, went on the humira shot and that just quite working, now I am getting ready to start the cimzia...we shall see how this goes.  Just curious cuz my GI told me if i remember correctly you can have an allergic reaction to the remicade if ya start it again


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## tots

I am due for my fourth infusion of Remicade tomorrow. I guess I didnt know that joint pain came with the Remicade? Because for the last few months my right knee has been swollen and very painful. Kinda sucks because I work retail and its hard to move around fast! 

My symptoms have not really gotten much better either... At what point do you call it quits with the Remicade??


lauren


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## beccahun

jami said:


> I was told, once you got off remicade you cant go back on it??  Anyone know something I dont?  I was on it for a couple years and was having the same symptoms as you guys, went on the humira shot and that just quite working, now I am getting ready to start the cimzia...we shall see how this goes.  Just curious cuz my GI told me if i remember correctly you can have an allergic reaction to the remicade if ya start it again


I was on Remicade for about 2 years. But I had started it too late so they took me off of it. I had surgery and went with nothing for about a year. Then it came back with a vengeance. We discussed the possibilities of a reaction to going back on the Remicade. I was alone for my first re-dose and it went fine. The second re-dose, I had my boyfriend with me and about 3 minutes into it, I went catatonic. They pulled it out, called code on me and revived me. Doc said thats the worst reaction he's ever known of. I had a second surgery. They officially promoted me to Chronic Crohn's Ileo-Colitis with IBS and put me on Humira. I was on that for 2 years and I started getting sick again. I had too many anti-bodies fighting it so it stopped working. They went in and dilated all my narrowing sections. Now they are going to try Cimzia. Here we go again....Doc says I'm going through med options quickly. Scared.


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