Spondylitis Association of America
Posted By: luckypony Cimzia...did it help you? - 01/16/14 04:22 PM
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.
Posted By: bedhed Re: Cimzia...did it help you? - 01/16/14 08:42 PM
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.
Posted By: AMS Re: Cimzia...did it help you? - 01/16/14 10:54 PM
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!
Posted By: rumble Re: Cimzia...did it help you? - 01/27/14 10:12 PM
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.
Posted By: AMS Re: Cimzia...did it help you? - 01/27/14 11:54 PM
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.
Posted By: luckypony Re: Cimzia...did it help you? - 02/03/14 05:24 PM
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
Posted By: rumble Re: Cimzia...did it help you? - 02/10/14 03:51 AM
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.
Posted By: AMS Re: Cimzia...did it help you? - 02/10/14 06:41 AM
I'm glad you're starting to feel better. Hopefully, it will keep working for you for a long time!
Posted By: luckypony Re: Cimzia...did it help you? - 02/14/14 07:03 PM
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.
Posted By: rumble Re: Cimzia...did it help you? - 02/20/14 06:21 AM
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.
Posted By: luckypony Re: Cimzia...did it help you? - 02/22/14 03:53 AM
rumble- I did give my pain management doc a call and ask about paperwork, and they said that they were more than happy to fill out anything for $50...sigh. Oh well. Maybe he'll do a better job. Worth a shot at least!

Good luck with your 4th shot! I had to skip my 2nd dose because I had a stomach virus this week frown Will be catching up with it on Sunday hopefully.
Posted By: cindyd Re: Cimzia...did it help you? - 02/22/14 03:16 PM
That's cheap, they charged me, over 500, and I raised H_ l!
Did get it lowered to 250, and that was still too much.
But it was worth it...
Posted By: rumble Re: Cimzia...did it help you? - 03/31/14 01:07 AM
I only got charged $35 the first couple of times on the FMLA papers. After that, they've never asked about it. Cindyd, FMLA has to be recertified every 6 months, so do they charge you that $250 each time??? I'd protest to get it lowered. There aren't many spots for them to fill out to account for that price.

Three months down on Cimzia and going well.
Posted By: Sean O Re: Cimzia...did it help you? - 03/31/14 01:33 AM
$250 seems unconscionable for a charge to fill out that form. I can't imagine it takes a doctor an hour to fill out that form. And the dr is making his living treating you and patients like you (and a very good living I might add).
Posted By: Tnate Re: Cimzia...did it help you? - 03/31/14 06:52 AM
Heard it works. Don't think it's as good as the others. Wonder why a doctor would think they're helpful after fusion has started. I find this next to impossible.
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