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Crohn's Disease Forum » Treatment » Cimzia/Certolizumab » Cimzia Side Effects


 
07-27-2012, 02:44 PM   #1
Jenamonkey
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Cimzia Side Effects

I just had my 2nd loading dose of Cimzia on Monday and I've been a wreck ever since. I thought I was having a bad flare and maybe a cold or something but now I think it's cimzia related. I've had worsening chills, fatigue, dizziness, nausea and gut pain all week. I had a killer headache for two days as well. I started the BRATY diet yesterday and my gut pain has decreased, but the nausea/dizziness/chills is much worse today. I've gotten tunnel vision and felt like I'm going to pass out multiple times. Has anyone had a similar reaction to Cimzia? I have a 5 month old and I'm having a hard time caring for him right now. I feel so depressed and I'm fighting with my husband as he doesn't really see to understand what I'm going through. My GI is OOO but her nurse called in some pred for me. I hate it but if it'll help with this I'm going to take it immediately. That's why I'm hoping someone else has some experience they can share.
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Jenn in Austin, TX
Diagnosed September 2010

Mother of One Beautiful Baby Boy 2/27/12!
Remicade Infusions x 6 weeks
Pentasa 2 500mg capsules x 2 times daily
Prenatal vitamins & Saccharomyces boulardii (Florastor)
07-27-2012, 04:03 PM   #2
JThorn676
 
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I was coming on here to make a post very similar.I have done 2 loading doses so far and within the past week, I see pots whenI standup at times, I feel very weak and I get REALLY bad when I work out. I go to the gym 6 days a week and take 1-2 hour long classes each day but i've had to leave the last few classes because I was dizzy and seeing spots. I have noticed my vision is worse too

My husband seems to think i'm a hypocondriact

These are listed as side effects for cimzia and it says to call your dr. I plan on caling mine monday

What are the possible side effects of CIMZIA?
CIMZIA can cause serious side effects including:
Nervous System Problems such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes. Symptoms include dizziness, numbness or tingling, problems with your vision, and weakness in your arms or legs.
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-Jennifer, Age 25
Mommy to two toddlers
DX with Crohn's disease 9/27/2011
Emergency exploritory surgery on August 2011 including - small bowel resection, appendectomy, removal of my cecum, right fallopian tube and right ovary and numerous abcesses drained.
Currently on:
Cimzia
Pentasa - 500MG 2 pills 4x a day
Calcium - 600 MG 2x a day
Vitamin D - 5,000 IU a day
MY STORY
http://www.crohnsforum.com/showthread.php?t=32068
07-27-2012, 04:40 PM   #3
Jenamonkey
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That sounds very similar to what I've had! Please let me know what your doc says. I'll update to after I speak with mine. They weren't aware of any common side effects like these but Im sure she'll research it for me. I actually thought I was having a flare or a cold until I googled 'how long will it take cimzia to work for me' and found this lady's blog.

http://mycrohnsadventure.blogspot.co...or-me.html?m=1

It seems like the home health lady that came out warned her about these side effects. I hope someone who's taken it for a while will add in their comments.

PS how do you workout so much with two toddlers and Crohns?? You're my hero!
07-27-2012, 05:34 PM   #4
JThorn676
 
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I take the babies with me They have a kidcare at my gym... the ladies that work there are AWESOME and the kids absolutely love going and it give me some "me time" since i'm a stay at home mommy!

My Crohn's is actually worse in the morning so I normally go to the gym at night. I will normally have a ton of my BMs in the am and be good in th PM... it doesn't make any sense but i'll take it if it gives me my gym time! lol

I'm going to look at that blog after I get the kiddies in bed! I was actualy told about all of these side effects by my home health nurse a month ago at the first injection, just didn't put two and two together!

Keep me posted and I will do the same! Hopefully a long time cimzia user can shed some light for us!
07-30-2012, 07:07 PM   #5
David
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I don't have any additional advice but saw that you requested additional support so wanted to bump your thread and see how you're doing? Better I hope?
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08-02-2012, 03:26 PM   #6
Jenamonkey
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Hi David, I am doing a little better. I started pred though :-< haha. I take my 3rd dose of the Cimzia on Monday so I think I'll know one way or another next week if it's making me sicker. Thanks for taking the time to respond and bump the thread.

JThorn676, when do you take your 3rd dose??
08-07-2012, 08:43 AM   #7
klutzytracy
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I've been on Cimzia now for 6 months and have had no side effects, (I'm also taking Immuran). I was on Remicade (with no side effects) but it wasn't working for me. I had a loop illeostomy in March (that's a whole different story) so my colon could heal and put my crohn's into remission and then have it reversed. I've had many complications with my illeostomy and cannot wait to have it reversed, GI doc said it would take 4-6 months, keeping my fingers crossed!. I do feel better though which makes me think the Cimzia is working for me!!! I am tired alot and don't have the energy I used to have and that's discouraging for me. I've had this disease since 2000 and was in remission for 10 years, then 2 years ago I had a flare up and it's been hell since! I feel for you and cannot imagine having to take care of a child on top of it!!! Hugs to you and hope you feel better soon!
08-07-2012, 08:58 AM   #8
Jenamonkey
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klutzytracy, i hope the cimzia continues to work for you and you can get that loop out soon!

i just took my 3rd dose on Monday, and so far so good. I am hoping that the illness after the 2nd dose was just a coincedence!
08-08-2012, 07:45 PM   #9
JThorn676
 
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I was coming on to check on how you were feeling! I had my 3rd dose on Friday and haven't had any side effects for about a week! How weird that we both had the same side effects after the 2nd injection. I'm glad you're feeling better, hope it continues!
08-08-2012, 10:28 PM   #10
DSTURBED
 
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I've been on Cimzia for about a year and a half now. Things seem to be ok in the beginning but now I've been experiencing the following:

- Weakness
- Sore Joints
- Weak knees
- Eye irritation
- Sinus infection (I've actually had this since day one of treatment and it hasn't gone away even with meds and surgery).
- Anxiety
- Problems sleeping

It seems to be helping my crohns but as you can see it has its repercussions. I had part of my bowl removed a few years ago which only gave me temporary relief. I hope this gets better.

Dion
08-12-2012, 10:49 PM   #11
saidinstouch
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Join Date: Nov 2007
Location: San Francisco, California
I've been on Cimzia for about a year and a half now. Things seem to be ok in the beginning but now I've been experiencing the following:

- Weakness
- Sore Joints
- Weak knees
- Eye irritation
- Sinus infection (I've actually had this since day one of treatment and it hasn't gone away even with meds and surgery).
- Anxiety
- Problems sleeping

It seems to be helping my crohns but as you can see it has its repercussions. I had part of my bowl removed a few years ago which only gave me temporary relief. I hope this gets better.

Dion
You need to tell your Dr. about these side effects immediately. Lymphoma is a very rare complication of Cimzia, but the symptoms are similar to what you are describing. Better to get some simple bloodwork and be sure than to sit and do nothing.
08-13-2012, 08:14 AM   #12
David
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You need to tell your Dr. about these side effects immediately. Lymphoma is a very rare complication of Cimzia, but the symptoms are similar to what you are describing. Better to get some simple bloodwork and be sure than to sit and do nothing.
While I agree that it's smart to advise their doctor about their side effects, nothing about those symptoms suggests lymphoma. Considering they are already experiencing anxiety, please be careful about making such statements. Thanks
08-15-2012, 10:20 AM   #13
Jenamonkey
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Thanks for sharing with us Disturbed! I haven't talked to many ppl who have been on the Cimzia for longer than a couple weeks/months. Do you remember how long it took before you thought it "kicked in"??
08-17-2012, 01:45 PM   #14
WhoKnows
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I just started Cimzia two weeks ago, after a severe allergic reaction to Humira. I used to call Humira a miracle drug, 3 months, and massive improvement. I got out of the shower this morning and noticed 2 rashes where I had injected the Cimzia. My mostly useless doctors office is off every Friday, and I cant call them. I've searched the net for some advice, but it seems its not a big problem. Has anyone else experienced this?
08-17-2012, 02:24 PM   #15
Jenamonkey
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I have a bumpy rash on the tops of my thighs and the back of my arms that won't go away but I can't remember if I had it before or after I started the cimzia. It doesn't hurt or itch or anything, it's just there. I wonder if it's related to the meds! I didn't even think about it. Hmm ..
08-17-2012, 02:37 PM   #16
WhoKnows
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I do my shots on each side of my belly button. They are distinct round bumpy-spotty looking definitely where I injected. They don't feel itchy or painful, but they are there, and they are ugly. I am just worried that it may be the start of the same problem I had with Humira.
08-17-2012, 02:48 PM   #17
WhoKnows
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In reply to Said....Are you taking prednisone? I had many of the same symptoms when I was on it. Add to that severe cases of the shirt soaking sweats at any given time. Since I have weened off the prednisone I have had massive improvements. I now take Entocort, with no known side effects.
08-29-2012, 08:01 PM   #18
ilovedevon
 
Join Date: May 2012
Location: Farmingville, New York
I just started Cimzia today and got my two shots. I am having really bad stomach pain now...almost like very, very intense gas pain. I haven't had this in the longest time and what I had for dinner is something that never gave me any problems. Connected? Idk. Anyone else have stomach pain like this??
09-04-2012, 07:26 AM   #19
AIjen
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I have been on Cimzia for......probably around 2 years. I'd have to dig around to see for sure. I started out on Humira, so I did not need to do the loading dose injections. Maybe it was because they were closer together or larger than the "normal" injections? I'm not sure. The only side effects I have noticed with taking Cimzia (I take 2 injections every 4 weeks) is nausea and feeling a little more tired for about 2 days after. This doesn't happen after every time, but most of them.

Hopefully this gives you guys some hope!!!
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Current Diagnoses: Asthma (Can't remember), Hashimoto's (June 07), Psoriasis (March 08), Undifferentiated Connective Tissue Disease (Jan. 08), Fibromyalgia (Jan. 08), Crohn's (Dec. 08), Chronic Fatigue Syndrome (June 12)

Current Medications: Levothyroxin, Lyrica, Advair, Cimzia, Zyrtec, and Prevacid. Back on Pentassa 12/04/12.
09-16-2012, 02:51 AM   #20
LParks
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Location: Nashville, Tennessee
Ive been on Cimzia since January of this year because I had extreme joint pain with Remicade. I have continued to have on and off joint pains, but not as severe as with Remicade.

My problem now is that I am starting to have worsening joint pain, fatigue, and headaches with occasional abdominal pain. My doctor feels it is my Crohn's and suggests that I do a double dose of Cimzia-400mg every 2 weeks. It is not an FDA approved dose, but she says she has had success with this in other patients. Wondering if anyone else has tried it and had any significant side effects? I can't afford to be any worse than I am now because I just got a promotion at work, but I want to make the right decision and follow my doctor's recommendations if it is something that has a high success rate without also having debilitating side effects. Any comments/suggestions?

Current meds: Cimzia 200mg every other week
Entocort 6 mg every day

Have tried and failed: Imuran, 6mp, methotrexate, remicade, sulfasalazine
09-17-2012, 10:00 AM   #21
Jenamonkey
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I am still on the 400 MG every 4 weeks, but would you consider a low dose of pred? I'm on 10 mg/day right now because I just can't afford to be sick.
10-20-2012, 10:49 PM   #22
fasted054
 
Join Date: Oct 2012
Location: westport ma
I've been on 400mg of cimzia for approx 16mo now an 8 500mg of pentasa for about 2 yrs now. I've had a colon resection in 2008 small bowel an illium . I've been dealing with severe muscle aches an joint pain ,sinus infections about every 2months, I'm on an inhaler for breathing an anxiety., had a colonoscopy last week an had to finish with an MRI of the small bowel. Found active crohns again doctor wants to reboot cimzia again (2shots every two weeks for a month) and also add mexoltrexate with I've never been on before. Just looking for some thoughts if anyone else is at or beyond this stage. Thanks Eddie.
10-21-2012, 07:59 AM   #23
ThanksP
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Hey Eddie, sorry to hear the Cimzia isn't working so well for you. The same thing happened to me...went to extra shots with 6MP and Prednisone. It didn't work for me. My MRE still showed inflammation and more narrowing. I switched to Remicade just over a year ago and have been GREAT since then. Have you tried Remicade or Humira previously?
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12-30-2012, 08:52 PM   #24
bnoyce
 
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Hi, I'm the "LADY" referred to in Jennamonkey's July 27, 2012 post.
Cimzia did not help me, so after taking it for almost a year, I stopped. I did notice lots of side effects, so the Cimzia affected me, but not in the way I wanted.
Then, I started a cycle of small bowel obstructions that would be relieved by steroid treatment, then come back when the Prednisone dose tapered down to 10 or 5 mg.
My GI doc wanted a capsule endoscopy study to see what was causing the cycle so predictably, so I swallowed the capsule, which is still retained in my gut.
So now, I'm scheduled Jan 8 for an antegrade double-balloon enteroscopy with jejunal stricture dilation. Sigh.
12-30-2012, 09:11 PM   #25
David
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Welcome to the community bnoyce. Thanks for sharing your experience with Cimzia.

We'd love for you to introduce yourself in our, "Your Story" forum so we can properly welcome you, if you're interested.

Best of luck with the January 8th procedure.
12-30-2012, 10:06 PM   #26
Jenamonkey
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Thank you for your blog bnoyce! I appreciate you putting your story out there. I hope it was ok for me to link it.
01-02-2013, 09:17 PM   #27
bnoyce
 
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Of course it's OK that you linked to my blog!

I write it hoping that it will help someone who may experience some of the same adventures. Thus, my url is "mycrohnsadventure.blogspot.com".
;-)

Thanks for taking time to read it. I hope it was helpful to you.

Beth
01-30-2013, 03:18 AM   #28
agrady1
 
Join Date: Oct 2012
Location: Milbrae, California
I had been on Remicade for 8 years and was supposedly in remission but was having lots of crazy unexplained symptoms for about a year or more. These symptoms included episodes of having an almost toxic reaction where I would have violent diarrhea for over an hour followed by severe migraines, chills, frequent urination, and sometimes muscle tremors. I was also having weakness and muscle spasms. We worried that I had developed problems to the Remicade but could never directly pinpoint it. After my last dose I had a severe reaction involving a major migraine, muscle fatigue and tremors, extreme nausea, and dizziness. My doctor took me off of it and we tried to see if I would stay in remission. I didn't and I ended up on humira. On my third dose I had a similar reaction. I was put on prednisone and since I was in the process of moving across the country I went a couple of months with no new drugs.

My new doctor put me on cimzia. I had an even more severe reaction. This time the reactions started with my first dose but my doctor wanted to try to keep me on it. Lots of severe muscle cramping, muscle fatigue, balance issues, dizziness, migraines, blurry vision, severe fatigue- which given that I have 2 small children was slightly terrifying, and nausea. After my third dose - which my doctor had me split the 2 injections by 1 week to see if I could handle it better- I thought I was going to have to go to the hospital. I was having problems staying conscious, I had a fever, and I could barely stand. The cimzia also made my whole body ache almost all the time especially my hands and feet. What amazes me is that my current GI is at UCSF and involved in lots of the research and studies that are being done and yet I feel like my side effects were not being taken too seriously and almost like they weren't that normal or common.

I am so sorry for everyone who has gone through these neurological side effects to these medications. I started Remicade not long after it had been approved for crohn's and I know that I was never warned about possible neurological side effects. Now every time I see commercials for any of the Tnf alpha inhibitors I notice that it is listed very quickly in the list of serious side effects. Now my doctor wants me to start stelara and there has been no mention of neurological symptoms but I know it listed as a potential side effect. The good thing is that my insurance is denying the off label use and I'm pretty sure that I won't qualify for the financial support so hopefully I won't have to make the decision myself to potentially risk another severe neurological reaction. In general I think I just want to be done with medications. I hope my experience helps other people realize that if they are having what feels like neurological symptoms they are not crazy. When I first went through it with the Remicade I thought I was going nuts.
01-30-2013, 08:56 PM   #29
David
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Hi agrady. Through all of that have you ever had your vitamin B12 levels tested? A lot of your symptoms sound like severe vitamin B12 deficiency which is VERY common in people with Crohn's disease.
05-10-2013, 09:29 AM   #30
Twbuto
 
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hi folks,,,I,m switching from Humira to Cimzia,,,keep ya posted. Humira was a non-event,but it did not work,,,I had Crohns flare ups every 4- 6 weeks. So hoping Cimzia will work more effectively, but the side effects I'm rerading has me a really concerned. But we all know with Crohns, we are all "walking test cases". GOOD LUCK friends..
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