Started Cimzia!

[Cornfieldgal]

Well today I received my first of three loading doses of Cimzia! So far so good! I had the big D all week and two hours after my first injection I noticed that I didn't have the urgency anymore! Amazing! There was a bit of a mixup at the doctor's office though. Apparently a pharmacy was supposed to mail me the medicine for the first three injections (that is the only way my insurance will cover it) but goofed. I was completely clueless as I never received a phone call or anything about it. Luckily they were able to use a sample for today.

 

[taxdaycrohnie]

Good luck with the Cimzia. I have been taking for 4 months, and have relatively good luck. Some of my new symptoms (terrible headache, dizziness) my rheumatologist said couldn't be from the Cimzia, and referred me to a neurologist. Hopefully, they can figure that piece out.

 

[Crohn's Mom]

Good luck with the Cimzia Corn I'm glad you've noticed such instant success..I hope it continues !

Tax...Gab has been on it as well for around 4 months and has just recently started with the headaches (migraines she says) as well. I feel for her as I get migraines. I was wondering if it was the Cimzia, but I have been getting migraines for years, as does my mother, so I was leaning more towards that as a reason. I'm interested to see what your neurologist has to say. Hopefully he can give you an answer...good luck!

 

[Cornfieldgal]

Been on Cimzia a little over a week and I have to admit I feel really good! I take my next set of shots next week and I'm a little excited to go in. The diarrhea went away completely about 5 days after my first shot and I am getting more energetic by the day. This is so much better than prednisone!

 

[ThanksP]

Thats great, CFG! Hope it continues to work for you for a long, long time!

 

[chrisnsteph1022]

Good luck! I've been on it for 8 months. Unfortunately, it's not working for me anymore.

 

[Manzyb]

That's awesome for you! I'll be starting Cimzia very soon. I'm hoping it will be just as good for me. I need some serious relief

 

[Cornfieldgal]

Today was my 2nd set of Cimzia shots. This time I did them in the thigh and it didn't burn at all. Last time was in the stomach and I thought it stung a bit. So far so good!

 

[Manzyb]

I just got the Cimzia starter pack today. I guess I'm not real clear on how you take it. The loading doses, is it 2 shots every week for 3 weeks? I thought it was more than 2 shots the first time, but I might just be thinking back on the Humira. I just haven't gotten any clear instructions for it! I think i'll call the doc in the morning.

 

[Crohn's Mom]

HI
The loading doses for Cimzia is 2 shots the first day, then 2 weeks later 2 more shots, then it's a month later and every month from then on...always 2 shots.
My daughter had to do her first set of 2 shots at the clinic, with her IBD nurse, just to be on the safe side and all.
I think it's a good idea if you do call so that you can get clear instructions !
I wish you all the best with Cimzia. It seems to be doing wonderfully for my daughter so far. The only issues she has really had from it, have been with her skin and a continuing staph infection.

 

[Cornfieldgal]

Hi Manzyb! My doc is doing the Cimzia starter dose a little different than Crohn's Mom. He started me out with two shots, then 2 more shots 2 weeks later, and 2 more shots 2 weeks after that. So 6 shots total in 4 weeks. Maintenance will then be 2 shots every 4 weeks. They are having me come into the clinic for my first three sets of injections. The first time the nurse gave me the injections, the 2nd time I did one and she did one, and next time I do both and see the doctor. Good luck!

 

[brieyourbest]

hey cornfieldgal! i am so glad that you are on Cimzia and i hope it puts you in forever remission! also, that is how my doctor prescribed my Cimzia and now I am on the 2 shots every 4 weeks! how is everything working out for you?

 

[ThanksP]

Yep, my loading doses were the same as Cornfieldgal's as well.

 

[Cornfieldgal]

Hey Brie! Going pretty good! The big D has been gone since the second set of shots and I have about a week or so before my last loading dose. What's your experience with Cimzia been like?

 

[Manzyb]

Awesome :0) I did clarify it with my doc before i took it! It says it on the box as well, what to do. I was just a little nervous that i had it right! The docs office didn't tell me that I needed to come in there to get them. I was on humira before, so I was use to the injections.

What the heck is up with it taking so long to inject the medicine?? It took me probably a minute or so to push the medicine in! Big difference than the Humira.. however, it didn't hurt at all. The Humira shots hurt like hell, I thought!

 

[Manzyb]

When I was pushing the plunger in to inject the medicine, i didn't think it was moving at all! i kept trying to push harder b/c I didn't realize it was just going in REALLY slow!

Hope you guys are doing great on it! Keeping my fingers crossed.

 

[brieyourbest]

Well, now my hair is starting to rapidly come out but besides that my GI doctor believes that the Cimzia will put me in remission.

 

[Manzyb]

That's awesome, Brie!

 

[Cornfieldgal]

I've always wanted to have thick flaming red hair so if my hair starts falling out I'm gonna start a kick-butt wig collection. Anyone gonna join me?

 

[Manzyb]

That'd be awesome! :0) I think I might go with platinum blonde. My normal hair color is a brown/auburn color without these highlights!

 

[Manzyb]

hey CFG! how you feeling? Did you do your 3rd set of shots?

 

[Cornfieldgal]

Hi Manzyb! Yep I had my third set of shots on Tuesday. The even better news is I haven't had diarrhea for over a week now! Hopefully you will have the same slow steady improvement. How is your energy level? Is the pain getting any better?

 

[Manzyb]

My energy level is improving some. I do have a 6 month old at home... so sometimes its a bit hard to judge that, I always feel fairly tired! LOL I'm still having a lot of stomach pain and nausea. I don't have a whole lot of diarrhea these days. I go about 5 or 6 times, but an improvement in that area. I had my second set of shots yesterday, so I'm hoping I see more of an improvement. As a whole, I can see some improvement, just not anything that's too impressive so far.

I'm glad you are doing so well!! I'm hoping I'm right behind you there!

 

[ChrisP]

I had my second set of shots yesterday, so I'm hoping I see more of an improvement. As a whole, I can see some improvement, just not anything that's too impressive so far.

I'm glad you are doing so well!! I'm hoping I'm right behind you there!

Any improvement from the 2nd dose? I'm scheduled to get my 2nd dose this Friday.

Hope you are doing well!

 

[Manzyb]

Thanks Chris.

I'm actually not doing so well. I'm a week after my second set of doses and I actually feel worse than i did before I started taking it. I can only eat a few bites of food before i get so full feeling, and I get so extremely nausesated, even zofran and Phenergan aren't helping it. i've been having some vomiting too. i had a CT and blood work done this morning to check out whats going on.

The docs been holding off on having me get a resection, but I think its way past time. I feel horrible.

 

[Manzyb]

How are you doing? i love how the shots aren't painful like the friggin' humira was! those hurt so bad.

 

[ChrisP]

Oh no! I'm so sorry to hear you're not doing well. I really hope it just takes some time to kick in and you will see some results soon. Be sure to let us know when you hear the results of the CT scan and blood work. Fingers crossed for you.

I've been on liquids since I left the hospital Sunday and haven't seen any results yet. I also have no appetite and can only tolerate 2 ensures a day (700 calories) so I've been shedding weight unfortunately. I see surgery in my near future... just hoping its a simple resection.

 

[Cornfieldgal]

Hi Manzyb! Sorry to hear things aren't getting better. But a resection might just be the ticket. I had a huge flare when my son was about 9 months and got resected when he was eighteen months, it was a godsend. Afterward I actually had the energy to chase him and play with him. Hang in there relief is coming.

 

[Manzyb]

Yuck! Sorry Chris. I hope things turn around quickly for you.

CFG- you know, 3 years ago I should have had a resection. There's like a foot in my small intestine that has just been horrible for the last few years, but my doc keeps thinking that the next new medicine is going to help it. Which I usually feel better for a little bit, and then right back where I am. I really thought I was seeing some improvement, but man, the last week has been really bad. Starting to lose weight again. I'd rather just do the resection and get it over with while she's only 6 months old and not mobile. We've pushed it off for too long.

My doc is always the "surgery as a last resort" kind of guy. However, lets get real. I've failed all other medications. I think we're at the last resort!

 

[Manzyb]

Well, I think the problem now, too, is that the Crohns has spread again into my colon and rectum. He wanted to try to get those areas back on track before he referred me for surgery.

Oh well, i'm going to push for it.

Are you feeling good CFG?? I'm glad that the resection made you much better. I've heard it does wonders for people who suffer so much.

 

[Cornfieldgal]

I am feeling really good Manzyb! Ya know I was thinking, my worst flare ups were about a year after I had each of my kiddos. At least for me I think hormones play a huge part in my disease flares. Also it is the worst mid cycle so that really makes me think there is a connection. The flare I'm having now may be due to early menopause which my doc says could be brought on by abdominal surgeries and scarring. Have you noticed any connections like that? With Sadie's recent birth that may be why you aren't getting any better. A resection might just put you in a nice long remission....My heart goes out to you girl! It's hard enough to keep up with a little one when you are healthy!

 

[taxdaycrohnie]

I'm so sorry to hear you aren't feeling well. I know after I stopped breast feeding each of my kiddos, the Crohn's kicked back in with a vengeance. (I am thoroughly convinced there is a strong hormonal component to it all.) It did fall back in line after adjusting my meds. I wish you the very best of luck that as your body returns to normal that the Crohn's will settle down and get better for you.

 

[Cornfieldgal]

Hey y'all! Haven't seen much on the Cimzia board lately. Hopefully that means everyone is doing really great! I've been on Cimzia for 3 months now and it is working awesome! Even when I was in remission with no drugs on board I didn't feel this good!

 

[Manzyb]

That's great CFG! I'm glad you're feeling so well.

 

[Crohn's Mom]

Great news CF ! I hope it continues for a very, very long time!

 

[Cornfieldgal]

Manzyb! Missed ya! How are you doing? Any relief?

 

[mjmassi]

It's pretty obvious that you need surgery. I just had two bowel obstructions resected and I am doing much better. Now I can eat just about anything, with no issues whatsoever. I feel stronger, I have gained 10 lbs and am back to working full time. My doctor wants me to go on Cimzia now. I'm a little anxious as I have been on 6 MP for 15 years (since my last surgery) but he thinks the Cimzia might control it better.

 

[Old Chron]

HI
The loading doses for Cimzia is 2 shots the first day, then 2 weeks later 2 more shots, then it's a month later and every month from then on...always 2 shots.
My daughter had to do her first set of 2 shots at the clinic, with her IBD nurse, just to be on the safe side.

I took my first dose of cimzia this morning. I showed up to the nurse appointment. She opened the box and saw that it had two syringes. I asked if I needed to take both. She said no. Everything went fine, went home and took a nap and when I woke up I checked out the cimzia site to find out I needed both of them. I went to the pharmacy and the pharmacist gave me the second injection. I felt disgusted because how are they supposed to be educating me when they aren't even giving me the right dose?

 

[mjmassi]

I've been on Cimzia for 2 years now. I have learned a couple of things. (1) It's better to take one of the two injections every two weeks (I.e. 200 mg per 2 weeks) than both of them every four weeks. The drug wore off after 3 weeks for me, and then the fourth week would be bad. This dosing regimen keeps it in my system at a more steady level. (2) I am now taking a daily dose of 6-MP (which I used for 15 years) in *addition* to the Cimzia. I found that the Cimzia by itself wasn't enough. The combo is working better.