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At the point of no return --- is cimzia worth it?

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Posted 8/27/2009 9:11 PM (GMT 0)
Hello all! As most of you know I have been writing periodically with a couple of questions about my disease. My last post discussed my concerns with starting remicade again, after being in and out of the hospital and the possibility of surgery.

Well I decided to try the remicade again...and two days after the first injection I felt awesome...solid stools and actual energy! Unfortunately this feeling didn't last long -- a week and a half later my body started to ache and I pretty much woke up paralyzed. Never felt this much pain in my life I could barely walk, every joint in my body was inflamed. My doctor told me I developed a reaction called serum sickness from the remicade and could no longer go on it. The positive aspect was that the Crohns was still manageable. I convinced her to keep me out of the hospital and send me home with my family so she gave me a Solumedrol dose pack and it cleared up.

My doctor is suggesting I now try Cimzia -- another TNF blocker. Again, the only other option is surgery...but in the past the Humira didn't work directly after my first time on remicade..and after this reaction I am pretty much freaking out. I am also thinking if I need to get the surgery, having a medicine to help maintain remission might be needed and I don't want to use up all my options right now! Is anyone on Cimzia? Are there any crazy side effects? I am aware that the more biologics you're on the less effective they become so is it even worth trying?

Thanks! wink
Posted 8/28/2009 2:10 PM (GMT 0)
P.S. I really need advice...the information on the internet isn't descriptive enough and the Cimzia infusion appointment is September 11th!

Posted 8/28/2009 5:02 PM (GMT 0)
Hi, Cimzia has been a life saver for me. It started working almost immediately. I also take it with 6MP. However, there are some serious side effects. I have become anemic and have had a UTI. I'm not sure that it's the Cimzia or the the 6MP. I began the Cimzia after the usual Humira and Remicade. As I write this I am awaiting to hear from the Rheumi the results of a brain MRI I had done to see if I am in the early stages of MS because Humira and Remicade have as their side effects, MS. Also we Crohnies have a slight higher tendency to have MS. So whatever that's worth, just keep that in mind. For me, after 30 years of Crohn's and Colitis, I needed some relief and Cimzia and 6MP are doing it for me.

Good luck to you, Darilyn
Posted 8/28/2009 8:19 PM (GMT 0)
You could also try to search, just click the link below, and type in cimzia, it's showing 100 pages of posts.

Good Luck

www.healingwell.com/community/search.aspx?f=17
Posted 8/28/2009 8:23 PM (GMT 0)
Cimzia worked well for my Crohn's (kept it in remission) but I stopped it after the clinical trial I was on ended because it wasn't helping enough with the arthritis.  I got upper respiratory infections frequently on it, but I get those on Humira too.  Other than that, I only had injection site reactions.  I really liked Cimzia while I was on it and I've got to say that the Humira isn't helping any better with the arthritis. 
Posted 8/29/2009 1:56 AM (GMT 0)
hey i've been on cimzia since april of 09'.  I recently had to stop per docs orders because i got ulcers throughout my mouth and esophegus and into my top part of my stomach.  it would work for like two weeks and then i would start to flare again.  also i got the herpes virus come out because of my suppressed imune system.  so it does work but for me it didnt work for long and it gave my body an opportunity to have the herepes virus come out.  now the next step it methotrexate.  i've been on humira, remicade,  6mp, had surgery with a temp ileostomy.  now this is the next step.  we'll see what happens. 
Posted 8/29/2009 3:19 PM (GMT 0)
Hi - I was in your place awhile back. Surgery or Cimzia. Now, I responded great to Humira and Remicade, without really any side effects, until they stopped working about 2 years in. So, we hope I will respond to Cimzia the same way.

I just had my first two shots this week so no news yet on how it'll work. My GI has several patients on it; he said no one has had any side effects and all his patients are responding to it well. Every drug has potential side effects but these didn't seem any worse than anything else. I much prefered the slight risk to the known risk of surgery =)
Posted 8/29/2009 4:37 PM (GMT 0)
Remicade worked great for me for two years, then it stopped. I tried Humira and needed weekly shots (denied by my insurance). Then I tried Tysabri, which did not benefit me *nearly* enough to deal with the risk. Finally I started Cimzia. My hopes were minimal since I failed both remicade and Humira (according to the docs). But, it seems to be helping. I do notice that it wears off a week early, but that's better than flaring non-stop! I have no side-effects at all from it. I don't think it carries as much risk of reaction as Remicade does, but I'm not positive. The only thing that happens to me is some weirdness (not painful) at the injection site. I think it's just the natural process as the med, which is super thick, dissapates into the system.
Posted 8/30/2009 7:32 AM (GMT 0)
I'm waiting to go on it so sorry I am not much help.
Posted 9/17/2010 10:41 PM (GMT 0)
Melissa, I had a similar history as you. I was diagnosed in 2002 with Crohn's, responded poorly to all other "normal" treatment options and so I tried Remicade. After my 2nd or 3rd dose I developed serum sickness as well. It was the worst pain I've ever felt. I literally could sit and watch my joints swell. I was admitted to the hospital and had a PICC line for 3 months w/IV steroids. I then tried Humira, the first time it didn't do much. I then had surgery and they took a foot of my colon. Soon after the surgery my docs combined the Humira and a Methotrexate injection into my regimen and that put in remission for 5 years. I started another bad flare-up about 2 months ago and now trying Cimzia as well. I got my first injection on Wednesday and hoping for some relief. The nurse who gave me my injection mentioned that the Cimzia has some mouse particles. That worries me a little as the doctors said that is what my body reacted to before. Has anyone else heard this?
Posted 10/26/2010 5:14 PM (GMT 0)
My experience with Cimzia (so far)

Had severe Crohn's in entire colon and some of small bowel.
Started on Imuran and Cimzia.
After two months treatment insurance decided thay wouldn't pay for Cimzia because I had never tried Remicade or Humira.
So doc put me on Remicade. Had about 2 infusions. Developed a mild fever. Doc recorded this "reaction" as an intoleracne to the drug, so we could get back to Cimzia (insurance covers it now because I tried the other drugs ).
My flare up was considered severe. The drugs weren't healing me.
In fact my fistulas worsened while taking medication.
Surgery was the next step. Had my colon and a little of small bowel removed. Feel Amazing! So what if I have an ilieostomy! I feel normal again.
My doctor stopped the imuran and I only take a Cimzia injection once a month. I have no GI symptoms, but I accredit that to the surgery, not the drug. Its more of a maintenance thing for me now.
The only side affect I feel is some tightness in my knuckle joints and in the last month I've felt some tenderness in my armpit. (will get this checked out ASAP, because lymphoma is one of the rare but possible side affects).

Like i said this is my experience thus far with Cimzia.

I will keep the site posted with any further personal findings!
Posted 10/26/2010 9:13 PM (GMT 0)
One story often heard is: tried Remicade (or others) and did not work or stopped working.

That is exactly what happened to me with Humira. But the reason why it did not work was that the damage has already been done. I had built so much scar fibroid tissue that it was not an inflammation anymore, it was a permanent ever growing set of strictures. No anti-TNF blocker will cure that !

So I had my bowel resection a month ago, took out 4 feet of bowel and I am feeling much better.

And, by the way, my new GI is putting me on anti-TNF blockers again to minimize current and future inflammation, this is the area where they do best.
Posted 10/27/2010 2:41 PM (GMT 0)
I have been on Cimzia for over a year and I have done great on it. No side effects, full remission and it saved me from a colectomy as every other drug failed or caused severe adverse reactions. After about 8 months I started having break through bleeding but added Lialda to the mix and have maintained remission since.
Posted 10/27/2010 3:02 PM (GMT 0)

Crohnie_Mel said...
I am aware that the more biologics you're on the less effective they become so is it even worth trying?

Recently published clinical trials have evaluated the response to additional biologics after failure on an initial or second biologic.

The researchers have concluded that there is a good chance you will respond as well to a second or even third biologic as you did to the others. There is less data on use of a third biologic but there is strong data that a second biologic is just as likely to be effective as the first one.

So you may want to discuss this issue with your GI and also get a surgical consult. Surgeons often have a different take on the situation from GI's and they may have a strong opinion about which way to go that might help you with this decision.

If you have not been on an immune-suppressant (6MP or Methotrexate) it may be worth a trial of that since they affect a different part of the immune system than the biologics. Some people need both, some need one and some the other. Only way to tell is trial and error.

Best wishes
Posted 10/27/2010 6:05 PM (GMT 0)
Just fyi guys this is a really old post and CrohnieMel has not been around in over a year.
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