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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.
 
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.
 
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.com/2011/05/will-cymzia-work-for-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!
 
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!
 

David

Co-Founder
Staff member
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?
 
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??
 
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!
 
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!
 
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!
 
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
 
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.
 

David

Co-Founder
Staff member
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 :)
 
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"??
 
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?
 
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 ..
 
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.
 
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.
 
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??
 
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!!!
 
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
 
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.
 
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.
 
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?
 
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.
 

David

Co-Founder
Staff member
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.
 
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
 
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.
 

David

Co-Founder
Staff member
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.
 
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..
 
Good luck with the Cimzia. I was a non-responder. The shots were painful, but it would have been worth the pain if Crohn's symptoms had been relieved.

I'm not wild about the increase in leukemia risk, especially to those under 30 years old. It's sad that the current treatments for Crohn's disease generally mess up the immune system at the same time.
 
I'm off the prednisone! Does anybody have a lot of gas? Just wondering if its from healing or not healing. Thoughts? Wisdom?! Sue
 
Hi everyone thought I would respond to this post. I have been on Cimzia since October of last year in the beginning it was really great seemed to keep things under control. Now im not so sure whats going on. I am constantly having a sinus infection with fever I can't tell you how many times Ive been on antibiotics. I also have a dry patchy rash on my back and stomach and the backs of my arms doesn't really bother though. also Ive noticed I have new joint pain. Before I started Cimizia I never had joint pain. The thing is I use to go to the bathroom 30 times a day up most of the night I was miserable. I don't do that any longer I do get a full nights sleep most of the time but IM sore and achy when I get up im thinking I would rather live in the bathroom then deal with all of this I have missed quit a bit work because of my problems. I told my doctor he told me I have a life threatening illness and I didn't have choice I have to take Cimzia I'm about to take matter in my own hands and take myself off take a round of pred. I can not pay my bills this way if I don't work. Sometimes I seriously feel like giving up.Just wanted to share that your not the only one having problems :smile:
Hope everything is working out for you.
 

nogutsnoglory

Moderator
Cleuger I'm sorry you are having issues with Cimzia. Have you tried other biologics like Remicade or Humira? Maybe those will help you without the side effects.
 
Hi there, so happy to share with other people on Cimzia. I was on Remicade for 2 1/2 years and it worked well, then I had to go to max dose then every 4-5 weeks and recently it stopped working altogether. My GI put me on Cimzia thinking that I'd do best on that versus Humira bc Humira is similar to Remi. I've had my first loading dose, take my second tomorrow.

I've had side effects from the first shot: first few days exhausted, achy, joint pain, allergies worse and headache. Then it subsided but I had upper GI pain and felt full after eating. My Crohn's is in my colon so upper GI is def side effect and I called the drug company and my dr bc it's overall made me worse than just having Crohn's symptoms and they said take full loading dose and then see what happens. I'd had a consult w/head of IBD center at Ceder's Sinai (I'm in LA) and they'd wanted me to do methotrexate w/Cimzia to kick it in faster. I had terrible side effects from 6MP and methotrexate is hard on the liver so I didn't want to try that and Cimzia. Has anyone done methotrexate w/Cimzia?

I'm frustrated because nobody seems to know why all these biologics give you joint pain/aches (also w/Cimzia leg exhaustion and I work out hard at the gym but going up the stairs makes my legs burn now. I didn't have that on REMI ever) and seem to flare up other autoimmune symptoms that aren't Crohn's related. I guess I'm just going to have to get the loading dose on board and hope that the side effects go away.

Appreciate any advice/responses from my fellow Cimi's...
 
Thank much for this thread! I just started cimzia last Thursday, after Remicade gave me med induced lupus and humira didn't do anything.

I feel like a zombie. Like my feet are a zillion pounds. I sat down to watch the packers game and ended up falling asleep on the couch (unusual). Just exhaustion, can't think straight, and did I say exhaustion? Also my joints aren't recovering quickly if I take a walk or something. I'm also going to call my doctor on Monday.
 
Sorry to hear you're experiencing those side effects. Same as I felt. Like I was run over by a truck. After my second round of loading shots last week, I felt the same way for 3 days but now I'm better. Hasn't helped w/the Crohn's symptoms yet but if it's only 2 days or so of exhaustion and joint pain after the injection AND it works to get me into remission then it's worth it.

But there is hope re: side effects wearing off once your body's used to the med.

Sending you good thoughts and let me know how you're doing after your second round of shots...
 
Things must just level off as time goes. I'm still on Cimzia. It will be 1 year next month and I don't have any symptoms now. As a matter of fact I know the shot works for me the problem is I think I need it 2 times a month instead of 1 because it seams to start wearing off going into the 3rd week.
 
I have been using cimzia for 4 1/2 years, i take 400 mg every month. I feel well the first 2 weeks and then i start having 5 to 10 BM's a day until my next shot. I have add a short bowel resection in Dec 2010. My c- reactive protien level's are high its 10 right now. My doctor put me on pentasa 4 pills a day for the next 3 months and he wants to do a colonoscopy to examine and give a booster shot of cimzia if it looks bad. The side effect of cimzia i have is darkening on skin on hands and legs/ dryness/ sensitivity to sun light. I like 6 MP it brought my symptoms under control, but the side effects are horrible i had nausea the 2 weeks, i had joint pains etc and the weird side effect is it hyper sensitive to smell. I can tell if my daughter had a dirty diaper not even being the same room :)
 
I just took my last "loading" dose today. With the first two I got a slight sore throat and had increased trips to the bathroom. I also experienced muscle aches. I will now have one injection every two weeks. I also now suffer from dizziness. I wonder if pre meds like I used with Reicade would help.

I am hoping this works and I can eat a salad soon!

Lauren
 
Hey ya’ll out there. I suffer from UC and arthritis from that. So my body has rejected Humira and Simponi along with sulfazalazine. So now I’m on methotrexate and just started Cimzia. I’ve done 2 out of 3 of the starter kit injections. First they sting/kill to the night hevens! Is that normal? Second I feel dreadful! My joints are flared up, I have a runny/stuffy nose, sore throat with red and white spots on it, sores in my mouth, headache, fever, stomach upset, lost weight, and the fatigue is like a truck hit me. I wake up and feel worse off then when I went to bed. My dr (whom I actually have high respect for) doesn’t believe it’s telated to the Cimzia but I rather that since it’s connected to squashing the immune system that I have contracted some type of infection or something ... I know that the timing of this happening was with taking these shots.... he doesn’t want me to stop - he said I can wait a week while I go to see my GP but otherwise continue. I have 3 kids, fibromyalgia, and a few other auto immune issues. I can’t afford to feel worse than this...
Thoughts?
 

Maya142

Moderator
Staff member
I would see your GP to check for infection. Especially to check your throat.

My daughter was on Cimzia - she has Crohn's and arthritis. No side effects at all for her. She said they did sting, but she didn't think it was as bad as Humira. But they do hurt - she said that after every set of shots.

She did really well on Cimzia from a Crohn's perspective. But it did take a while (about 3 months) and we had to increase the dose from 400 mg monthly to 400 mg every 2 weeks. But once we did that she felt a lot better.

I think it's too early to say whether it's helping you, but I would get checked out for an infection to make sure you don't have one. If you have an infection, that could also cause both your UC and arthritis to flare - my kiddo flares with every single infection, even just a cold. That would explain why you feel worse.

Good luck!
 
I've been on Cimzia for roughly 3 or 4 years now. We found out pretty early on the 400mg every 4 weeks wasn't enough and have been doing 400mg every two weeks instead and have been doing great! There is a blood test out there to check your Cimzia levels. You get your blood drawn the day you're due to inject (before you inject) and see if it's still at a therapeutic level.
And to the poster who said they sting.. let then warmup from the fridge at least half an hour.. helps immensely!
 
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