• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Just Started Cimzia

I just started Cimzia this morning. Had two shots (200mg each) and injected in my legs. I will say that once you just inject yourself its fine. Its WAAY less painful than Humira was and easier cause you can stop pushing or slow it down if it starts to sting a bit.

So far I haven't had any side effects but I just took it a couple hours ago.

Hoping this is the one.
 
Good luck Katiesue. I just did the humira yesterday, and it seems more painful every time. I hope cimzia helps!
 

Crohn's Mom

Moderator
Hi Katiesue :)

I'm just seeing this, but wanted to wish you luck with the Cimzia ?
How are you feeling now? Have you noticed any benefits ?
My daughter noticed within a day or two ~ at first she was really really tired, and then she got this crazy burst of energy. It was so funny. It only happened the first couple of months, but she loved the feeling of all that energy for a few days :)
Hope it works wonders for you!
 
Thanks! I noticed the day of the shot I became SUPER tired after and I fell asleep for a couple hours. Other than that I haven't noticed much in the way of side effects or energy boosts. Mines kinda going downward cause I'm tapering pred (on 2.5 mg as of today from 5mg). I haven't been off steroids since April or May 2012.

I have noticed very sore knees but the weather keeps changing and I've been running every other day to get my stamina and endurance back up after surgery (have an ileo).

Next injection is next Saturday however they sent me the powder form so we will see if I can get it exchanged in time. The pharmacy lady originally just told me to go to the pharmacy and get my own syringes to inject it... UMM no. I don't have 2 different sized needles OR sterile saline to reconstitute it. No.

:)
 

Crohn's Mom

Moderator
I hope your tapering off the steroids goes well, and doesn't cause too many side effects. ~ I wonder if your sore knees could be attributed to that ? ~ Gab was steroid dependent and had a heck of a time coming off of them.
Now when she needs them they prescribe Entocort instead of Prednisone, as it has fewer side effects and I think only like 3% (?) is absorbed into the blood.

We never had to worry about the powder form ~ thank goodness ! I hope they get it straightened out for you in time :)

I saw on another thread that you have an end ileostomy with a mucus fistula, that is what gab had as well ! Hers was actually at the same spot as her stoma, so it was really hard to see, unless you knew what you were looking for. She had hers reversed last December :)
Is yours permanent, or do you have a chance of reversal if the Cimzia heals things well ?
 
Mine's temporary and due to a bowel perf. during colonoscopy. I currently have a surgery scheduled for january 28th but will have to have a MRE beforehand to make sure everything is healthy.

I'm attributing the knee soreness to pred right now-- its gotta be that (I haven't tapered Pred in a year and a half but I think I remember sore knees being a part of that whole process. I would think I should be fine by now with the whole adrenal gland waking up since I've been under 10mg for couple weeks now. Since going to 2.5 from 5 though I'm noticing I've been pretty thirsty. Of course, that's par for the course with an ileo too.

I'm kinda at a wait and see period with everything. I hope Cimzia is the one. If not maybe I can get on Stelara. I was supposed to be in a medical trial for Stelara but my CDAI scores weren't high enough to let me in (and then a month later I have this bowel perf. in a highly inflamed TI). Basically the whole medical trial process taught me to be a big baby about your symptoms cause if you try to champion through them, you won't get the help you need. Rawr. :)
 

Crohn's Mom

Moderator
Oh goodness ... Sorry about the perforation, but happy for you that it's temporary !

I've never heard of Stelara. I'm gonna have to look that one up, Gab's running out of options with meds. We've discussed her doing a med trial, but then decided that it's not worth the risk of her getting the placebo ~ her disease is just too aggressive to risk that.

She's getting an MRE on the 6th because she has once again developed fistulas, except this time they have come to the surface on her scar where her ileostomy was; they will determine after that if she needs surgery again, or to add methotrexate to the Cimzia, or switch to Humira. We shall see...:)
 
Top