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cimzia and prednisone worth the side effects?

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Crohn's Disease
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Posted 3/15/2012 8:01 PM (GMT 0)
I was diagnosed with Chron's 10 years ago, I was in remission until about 8 months ago. I have had every test know done and I have Chron's in my upper and lower intestines and have a lot of scar tissue built up. Apparently I let it go a little too long before going for treatment. I started Cimzia in addition to prednisone (Ive been on prednisone for 5 months, started at 40mg now weaning off and down to 10mg) about 1 month ago. I have had 2 treatments and am scheduled to have my 3rd tomorrow. I feel awful on these drugs. Headache, nausea, chest pain, fatigue, and newest to the list is tingling in my hands and head. Well I guess I am not for sure that it is the medicine but I dont know what else it could be. My Chron's feels better but the rest of me feels terrible. Has anyone had side effects like this on these drugs? I am not so sure I want to do the treatment tomorrow. It seems like I felt better off all of the medication. I can handle the Chrons, side effects of drugs not so sure! I tried Remcade first but had an allergic reaction to that, Any thaughts?

Thanks :)
Posted 3/15/2012 11:26 PM (GMT 0)
I hear you!! I've been on cimzia since November. After the first 3 doses I had migraines for up to 5 days. I had to go see a neurologist and now am on more meds!! I thought the headaches had finally lessened after the 4th dose, but the last few weeks I'm having lots of migraines again. Not sure what's going on with that.

I take reglan for the nausea and that works wonders. I am only nauseous the day and day after I take the cimzia.

Some of what you are experiencing could very well be the tapering of the pred. It's an evil drug that does work wonders! Have you talked to your doc about all the side effects? I'd recommend telling your GI that you are having a hard time with all the side effects.

Anyway--I'm about at the point where the side effects are outweighing the benefits of the cimzia. I have an appt in 3 weeks to see my GI but have been thinking I should bump it up since I'm so miserable.

Hopefully once you are off the pred completely you'll start feeling a lot better!! {{hugs}}
Posted 3/20/2012 12:41 PM (GMT 0)
Thank you! Its good to know Im not going crazy :) I am going to call the Dr today since im down to 10mg of prednisone a day and just took my 3rd treatment of Cimzia. We will see whats next ! Hope you feel better soon too !
Posted 3/20/2012 1:25 PM (GMT 0)
Hi,

I think you should tell your GI about your symptoms as I think they are related to the Cimzia.  I am on Humira and it causes headaches also, but not for 5 days.   The tingling in your hands and feet  can be from Cimzia also.  I think these could actually be worse without the prednisone. 

Take care,

Julia

 

Posted 3/20/2012 1:39 PM (GMT 0)
Thank you Julia, I will definitely mention all of the symptoms. I hope they don't get worse, I cant take this prednisone any longer ! I guess we will see.

Thanks!
Stefanie
Posted 3/21/2012 12:12 AM (GMT 0)
Hi Stef,

I'm currently on Cimzia, and I get headaches too. It sucks, but for me I've tried every other biologic (humira, remicade, tysabri) so i'm out of options. I'm on 30 of pred still and it sucks, I look like the elephant man and I feel like a crazy person. For the headaches, the best thing I've found is vicodin...which i know is a little heavy handed, but I don't think they are vascular in nature, so I refuse to go on migraine meds. Best of luck in finding a fix. Keep us posted.
Posted 3/21/2012 1:28 AM (GMT 0)
well, I for one agree.  At times it seemed that the meds were the problem more than the crohn's.  so after a year of fighting all of this, my GI, my GP and I all came to the agreement to STOP all crohn's meds for a while.  The hope is to give my body a chance to rest and recover from the meds.  I have been off all crohn;s meds sice Nov 2012, nd this is the best I have felt in years.  Now,  the issue/question is how much damage is the CD doing to me.....we dont know for sure, but I am not having many symptoms.  so we will go on monthly check ups and then do another colonoscopy in december-12 months since the last one-amd compare the two.  I know this is risky especially since I have resection surgery after removing the ilium.  But, this is a quality of life issue for me.  Good luck,  but make sure you and your doctors are in agreement and have  a plan to monitor you if you stop the meds. 
Posted 3/22/2012 12:44 PM (GMT 0)
That is the route I would like to take as well. Athought I too am concerned with what damage the CD will do. I was med free for almost 9 years until October of last year and felt ok. A flare up here and there but I would just eat clear liquids for a week or so and I was good to go. Unfortunately the Gi told me that I let it go too long and now its damage control. I think it looked so bad because at the time I was doing Weight Watchers and was eating nothing but raw fruits and veggies and lots of fiber and whole grains. I know, I didnt know any better :/ So now that I am eating the right things for CD I feel like it is much better and a colonoscopy would probably show that. I talked to my GI last night he said that the side effects could be allergies or Cimzia or my body coming off of the prednisone? He said to keep decreasing prednisone and if I still have symptoms when its time for my next Cimzia shots (3 weeks) to hold off n the Cimzia and see if symptoms get better. So we will wait and see . The nurse said I could be on this for the rest of my life, I say no way. I want off as soon as possible !! I would also like to start trying to have a baby, has anyone ever tried to get pregnant or gotten pregnant while being treated for Chrones? My GI said to wait until this flare up is better but I would prefer to be med free if and when I get pregnant. Any thaughts?
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