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Just prescribed Cimzia

Chick

Chick

Okay, I was resistant to do Humira because I'm doing fairly okay (after extreme liver toxicity from Imuran 3 weeks ago) on nothing but Prednisone and Lialda. Paperwork for Humira was taking awhile, so I'm in a gap right now and am doing fairly okay. (I was just diagnosed in early Nov, and then Imuran just about killed me.)

Today, I find out that my insurance won't cover Humira, so my doc is switching to Plan B, Cimzia. I'm not thrilled about the sudden switch dictated by insurance, nor the fact that it's a newer drug. I need to read up on it, but eep. Wisdom? Advice? Should I try to go drug-free since I'm doing fairly okay? After Imuran and the awful side effects of Prednisone, I'm really really resistant to going on yet another drug now.
 
Sailorluna

Sailorluna

Hi Chick,
I just completed my 2nd loading dose of cimzia. Humira caused me bad joint pain and seemed to stop working completely about the same time.

My insurance denied Remicade when it was selected by my doctors Dec 2011 and required that we try everything else first - so I understand that frustration.

Sadly, crohns can just keep on working away withought causing outward side effects. Personally I will likely not ever dump all the meds - as tempting as it sounds. I went in for a scope a couple months ago feeling pretty great fingers crossed to not have to replace the humira, only to find out that I have substantial rectal activity. My hopes to only be on azathioprene were squashed.

Have you had a recent scope or blood work to check for inflammation? What does your gi suggest? Good luck with whatever decision you make.
 
Chick

Chick

Thanks for your reply, Sailorluna.

I had a colonoscopy a couple of weeks ago, and my doctor said I was healing. That's the only reason why I'm considering this. If my body is healing, and I'm so newly diagnosed/"young" in the disease, maybe there's a chance to halt/reverse/manage it without the HEAVY drugs? (Again, I'm on Lialda and Prednisone and dream of the day I can get off the Pred.)
 
C

Cornfieldgal

Hiya Chick! I have been on Cimzia for 15 months and outside of a few headaches I have had a really good experience with Cimzia. It is keeping my Crohn's under such good control I actually don't even remember I have it most days! I hope your experience is even better!
 
K

katiesue1506

There's a lot of substantial research out there that shows its better to treat Crohn's Disease with a top-down approach (using bigger drugs earlier).

I'm on Cimzia and have completed all of my loading doses. So far no weird side effects other than fatigue the day of injection (I'm going to start injecting before bed so I can not notice this effect).

I've tried azathioprine, LDN, Remicade, Humira, pred, combos of those drugs, allopurinol, and now I'm at Cimzia.

Not taking anything can really hurt you. You might be "feeling" okay, but then again so was I a couple a months ago before emergency surgery. My doctor told me with the state of my terminal ileum, he was surprised I was even able to go to work and eat the things I had been (like chips and salsa). I had to have my ileum removed due to perforation and severe inflammation. He said if it hadn't perforated during colonoscopy, it would have done it on its own when I least expected it. Again, I was feeling great--- running a couple times a week and working a highly active job. You just never know what going on down there.
 
Chick

Chick

Oh my goodness, thank you for your message. Wow, that's scary--but very good to know. That's exactly what I've been wondering: if I'm feeling so good, might the disease still be doing damage? Your response is very helpful, and a good reality check. Your tip about when to do the injection is also good to know. Thank you!
 
Crohn's Mom

Crohn's Mom

Moderator
Hi Chick,
I just want to add that I agree with the others and no meds is not a great idea with Crohn's ~ it can be a very silent disease and that silence can do a lot of damage if left untreated.

Have you found out when you can start the Cimzia ? Or made a decision about using it?

Best of luck to you and welcome to the forum!
 
Manzyb

Manzyb

Chick said:
Oh my goodness, thank you for your message. Wow, that's scary--but very good to know. That's exactly what I've been wondering: if I'm feeling so good, might the disease still be doing damage? Your response is very helpful, and a good reality check. Your tip about when to do the injection is also good to know. Thank you!
Click to expand...
Even if you are feelig good, yes the disease can still be doing damage!

It is very important to stay on your meds, even if you think you can handle it on your own. I've learned this lesson the hard way.

I was on Cimzia, but only for 2 months before I had a resection and then was put on Tysabri. My doctor is thinking about sticking me back on the Cimzia because when I tried it, my terminal ileum was too sick to be helped by anything.

I'd say go for it! I know side effects can be scary, and I can relate completely. I had the same thing happen to me while on 6MP. When I was doing the cimzia injections, I'd get a headache and feel a little fluish for the first day, and then nothing after that.

Good luck to you!
 
S

Sue-2009

I'm off mercapturine and on to Cimzia tomorrow. I'm so worried about this drug. Mercapturine made me suspect to basil cells and it wasn't kicking crohns butt. I put it off. I was feeling to good. I hope I didn't wait too long. Hope it activates quick. S
 
S

sassy

katiesue1506 said:
There's a lot of substantial research out there that shows its better to treat Crohn's Disease with a top-down approach (using bigger drugs earlier).

I'm on Cimzia and have completed all of my loading doses. So far no weird side effects other than fatigue the day of injection (I'm going to start injecting before bed so I can not notice this effect).

I've tried azathioprine, LDN, Remicade, Humira, pred, combos of those drugs, allopurinol, and now I'm at Cimzia.

Not taking anything can really hurt you. You might be "feeling" okay, but then again so was I a couple a months ago before emergency surgery. My doctor told me with the state of my terminal ileum, he was surprised I was even able to go to work and eat the things I had been (like chips and salsa). I had to have my ileum removed due to perforation and severe inflammation. He said if it hadn't perforated during colonoscopy, it would have done it on its own when I least expected it. Again, I was feeling great--- running a couple times a week and working a highly active job. You just never know what going on down there.
Click to expand...
HI BEEN ON REMICADE FOR 15MONTH SEEMS TO STOP WORKING AFTER A FEW WEEKS? NOW ON PREDISONE FLAGLY APRISO EVER HEAR OF THAT? MY QUESTION IS THEY WANT TO DUE IMRAN AN CIMZIA HAVE YOU DONE THIS NEED REPLY HAVE TO DECIDE MY THIS MOnday after dinner he wants to remain on remicade the higher dose! so will be calling the office in am thanks to all for on the info :soledance:
 
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S

sassy

:welcome:hi just a up date on what meds my husbands is doing now!
they are doing 10ml of reminicade along with imuran an all other meds. insurance decline/cimaza, but will see what results are with this combo.

then on to another> hopefull this will help him. BUT HAD ELEVATED SUGAR 325 YESTERDAY. HE HAS A LOT OF ENEGY CAN NOT SIT FOR A LONG TIME. BUT THAT GOOD I GUESS?
having blood work every week for imuran, but only one more combo left but will alot prayer thing will turn around for him thankis for responding to question. have a great day !:rosette1::smile:
 
Manzyb

Manzyb

I think I would call your doctor an talk to them. Are you completely done with the starting doses then? It can take a few months I take full effect, but you should be feeling somewhat better.
 
S

Sue-2009

I am pretty sure I started early Feb. do you think I am being impatient? I'm getting worried. I called them Monday and I went back up to 15 mg of Prednisone. Did anyone here have to wait sometime for it to work?
 
nogutsnoglory

nogutsnoglory

Moderator
You should begin to feel a difference after the 3 loading doses but it can take months for true difference. I believe after 3 months they will check your bloods and possibly do imaging tests.
 
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