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Cimzia...did it help you?
#263449 01/16/14 04:22 PM
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Rheumy just switched me from Humira to Cimzia, as he thinks my AS is particularly aggressive and has definitely caused more fusion in my back over the past 4 months...aka the Humira did not do its job.

I haven't been able to find much info on Cimzia and only one study done with it.

Does anyone have any first hand experience? Did it work for you? Any crazy side effects (besides the norm)?

Since this has been newly approved for AS as of last October, I'm curious to see how many people have been prescribed it.


22 years old. Female. Diagnosed with AS in June of 2013 but experienced symptoms for two years prior. Fused SI joints, fused L5-S1. Love and own 4 horses who keep me walking and riding around despite the pain. Married to a wonderful man, and struggling to deal with this chronic illness while being a newlywed and starting my first desk job.
Re: Cimzia...did it help you?
luckypony #263465 01/16/14 08:42 PM
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I'm in the same boat as you, curious for some answers. Humira's impact on me has been negligible in the past 3 months and am switching over to something different, likely Cimzia.


28 y/o male. Confirmed HLA B27 negative (after 2-3 separate blood tests). Diagnosed AS/SpA in Sept. 2013 based on radiographic evidence of chronic sacroiliitis dating back to at least age 18. Possible hip and wrist involvement. Cardiac arrhythmia (benign PVCs) that goes into overdrive when flaring.

Thanks to yoga, I am more flexible than my rheumatologist. We'll see how long that lasts...
Re: Cimzia...did it help you?
luckypony #263478 01/16/14 10:54 PM
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Cimzia worked for me! I did get shingles while on it, but I don't think that is unique to cimzia versus the other biologics available. Good luck!


Amy
28 y/o HLA-B27 neg
Dx: AS/SpA, cardiac arrythmia, Hashimoto's
Currently taking: remicade, flexeril or nucynta ER occasionally
Re: Cimzia...did it help you?
luckypony #263888 01/27/14 10:12 PM
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I will take my 3rd dose of Cimzia on Thursday. So far, no side effects and no real indication that it's doing anything. Other than I had a particularly better day on the 2nd day after I took the first dose. Since then, nothing much different yet.

I've already had Remicade with no response, followed by Enbrel, Simponi and Humira with varying levels of response. Stopped the Enbrel and Simponi when they quit working or didn't last the entire dosing period (respectively). Stopped the Humira because it ran down my WBC and neutrophil counts too low.

Doesn't seem like a lot of people have tried this yet. I'll check back later to see if anyone has posted a positive review of Cimzia. AMS, how long did you take Cimzia? From your sig, it looks like you aren't on it any longer.


Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Cosentyx from Oct to Dec 2017. Then back to Cimzia in May 2018.
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia, Cosentyx.
Re: Cimzia...did it help you?
luckypony #263892 01/27/14 11:54 PM
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I took it for several months. I stopped taking it for a while because of other problems (not related to cimzia or side effects). When I restarted anti Tnf meds, I simply restarted with Enbrel because it's free under my insurance plan.


Amy
28 y/o HLA-B27 neg
Dx: AS/SpA, cardiac arrythmia, Hashimoto's
Currently taking: remicade, flexeril or nucynta ER occasionally
Re: Cimzia...did it help you?
luckypony #264024 02/03/14 05:24 PM
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Seems like there's not that many people who have tried it yet...curious to see how it's gonna work. I get my first injections on Wednesday this week. Also getting some steroid shots in my chest, spine, and SI joints. Hoping the combo of the Cimzia and the steroid shots will calm everything down.

Currently missing an average of 2 days per week of work...and people are starting to notice frown


22 years old. Female. Diagnosed with AS in June of 2013 but experienced symptoms for two years prior. Fused SI joints, fused L5-S1. Love and own 4 horses who keep me walking and riding around despite the pain. Married to a wonderful man, and struggling to deal with this chronic illness while being a newlywed and starting my first desk job.
Re: Cimzia...did it help you?
luckypony #264183 02/10/14 03:51 AM
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It's about 2 weeks since my 3rd dose and I'm beginning to feel it's working. Sort of sneaks up on you. Had a good weekend just afterwards, even a slight decrease in pain meds on my non-work days.

Of the pains that returned over the time since I had to stop Humira, the last-to-appear (heel pain) has been the first to disappear. Stamina is slightly better. And given that winter is my worst season-and we are having a dreadful one now-it's even more exciting to see a little bit of positive.

luckypony, have you heard about FMLA? (assuming you are in USA) If you have to miss work due to a chronic condition (AS), it could help protect your job. Out 2 days of 5 is bound to make someone notice. Look into it--your company's HR department could get you the paperwork for your doctor to fill out. I use it for periodically needing off for procedures by my pain mgmt doc or exacerbations of pain/inflammation. Usually not more than 2 days each quarter, but sometimes, it's worse.


Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Cosentyx from Oct to Dec 2017. Then back to Cimzia in May 2018.
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia, Cosentyx.
Re: Cimzia...did it help you?
luckypony #264185 02/10/14 06:41 AM
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I'm glad you're starting to feel better. Hopefully, it will keep working for you for a long time!


Amy
28 y/o HLA-B27 neg
Dx: AS/SpA, cardiac arrythmia, Hashimoto's
Currently taking: remicade, flexeril or nucynta ER occasionally
Re: Cimzia...did it help you?
luckypony #264247 02/14/14 07:03 PM
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rumble - I'm hoping that with my second dose next week, things will calm down. I always flare up when I try a new biologic.

Unfortunately, I am just shy a few months of being eligible for FMLA. Until then, I have Personal Leave and Short Term Disability if needed.

I just received a copy of the paperwork my rheumy submitted to my HR department and it was complete crap. I paid $100 for him to mark my disability status as TEMPORARY. Very frustrated with him lately. Searching for a new (younger) rheum to get a second opinion.

Might have to put another topic up in search of a really good rheumatologist in Texas.


22 years old. Female. Diagnosed with AS in June of 2013 but experienced symptoms for two years prior. Fused SI joints, fused L5-S1. Love and own 4 horses who keep me walking and riding around despite the pain. Married to a wonderful man, and struggling to deal with this chronic illness while being a newlywed and starting my first desk job.
Re: Cimzia...did it help you?
luckypony #264344 02/20/14 06:21 AM
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My rheumy wasn't too interested in doing FMLA paperwork for me. But my pain doc was more than happy to do so. If you don't have one (and you have pain), find a good pain mgmt doc and ask them to do the FMLA paperwork when you are eligible. I'm covered for procedures, doctor visits and exacerbations of pain. Since I work 2nd shift, I rarely have to do appts that interfere with work. It's the procedures that take time (whole day). In reality, it's the chronic pain of this disease that gives me the most trouble, anyway. Good luck with the Cimzia. Looking forward to my 4th shot next Tuesday.


Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Cosentyx from Oct to Dec 2017. Then back to Cimzia in May 2018.
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia, Cosentyx.
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