Switching from Humira to Cimzia

General
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So had my regular checkup with my Rheum yesterday and we discussed trying a new med. I've been on Humira for almost a year now, after failing Enebrel due to bad site reactions, and while it's not terrible I don't seem to be doing any better than I was a year ago. In fact, I may be doing worse. (I'm also still taking MTX injections, though we've moved from 8ml to 6ml, and are hoping to drop it down further, since we think that's part of my fatigue and stomach problems).

Side note: Anyone else have morning stiffness that's turned into agonizing stiffness and pain? - I went from being a little stiff until I moved around, to basically being in agony for the first hour of every morning. Can't bed over or bend my spine/neck without wanting to cry, standing on my feet makes me want to chop them off, etc. A warm shower in the AM seems to help speed up how quickly this wears off, but it's usually at least an hour before I can comfortably move (and some days there's that lingering all day stiffness/pain).

Anyway, I'm not sure if it's the above that I explained to her yesterday, the fact that I'm still so fatigued I don't remember what it's like to not be tired, the lovely bout of who knows what that made my stomach and digestive system freak out last month (similar symptoms as an ulcer + mild-moderate 24 hour heart burn, which seems to have been cleared up by a course of Prilosec), or the fact that my knee was pissed off when I went in because I had to park on the 4th floor of the parking garage at work and stairs always piss off my knees.

Regardless - we've decided to try one more TNF inhibitor before trying something else, and Cimzia was the winner. Waiting on approval, and taking my last Humira this weekend (thank the spaghetti monster, I hate those shots) and was curious if anyone had experience with Cimzia they could share. I'm curious how different it is than the Humira, both in how the injections are done (I just watched the video on the website, and it looks like she injected at an angle instead of at 90 degrees to the body?) as well as side-effects or anything else.

It does get better right? Like, I've almost become resigned to this being my new normal, fatigue, morning agony, regular almost daily joint pain (lately my hips have been having none of it). I've even been trying to keep active by going to yoga a couple times a week when I can, and biking to work when the weather cooperates (it's a short 2 mile ride). I take my meds on schedule; I take my supplements (Vit. D, Folic Acid, Vit. B-12, and multi-vit.); hell, I even eat better than I ever have (including childhood!). But stasis. BLAH. I'm sure you all can relate :)

Anyway - any shared experiences will be helpful, I'm sure, in relieving some of my anxiety about moving to yet another medication.

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I am switching from enbrel to humira soon. It is only my second biologic so I unfortunately can not offer you much insight. I was curious about my switch too. I thought the enbrel shots hurt bad I inferred from what you wrote so do the humira shots. Good luck on your new medication I am not that familiar with that one.

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I think Cimzia is one of my last TNFs to try. (I think we're saving Remicide for a last ditch effort on the TNFs)

My experience with the Enbrel vs Humira shots is that the Humira is less painful than the Enbrel (but then, I had terrible reaction to the Enbrel with baseball-softball/grapefruit sized welts and bruises left from the injections) - the trick with Humira is letting it warm to room temp first (the colder it is the more it hurts). By now, (I just took my last Humira shot Sunday) the only thing painful about the Humira shots for me were the actual medicine (it stings as it disperses from the injection site).

I hope you have good luck with it! Other than some recurring gastro issues, I didn't have much trouble with Humira; it just doesn't seem to be doing much for me otherwise.

Scienceteach said:

I am switching from enbrel to humira soon. It is only my second biologic so I unfortunately can not offer you much insight. I was curious about my switch too. I thought the enbrel shots hurt bad I inferred from what you wrote so do the humira shots. Good luck on your new medication I am not that familiar with that one.

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Have you tried/discussed Simponi (golimumab) with your rheumy? I've been on it over two years now switching from Humira. It's a monthly injection and the dosage (50mg or 100mg) depends on your weight. For me the lower dose was waning a little, or more to the point not having any effect on my knees, so my rheumy increased it to the higher dose and it's working nicely. Seems that fewer people have tried this bio but I've had no problems at all (it's available as a pre-filled syringe or the auto-injector and the usual bringing to room temperature applies) and it works, for me anyway. So maybe you do have another option before Remicade. Good luck with the Cimzia, will be great if you don't need a back-up plan.

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I'm going from Remicade to Cimzia in a few weeks, as, after four years on Remi, I'm having continued spondylitis issues, which my rheumy is hoping to better address with Cimzia. Looking forward to learning more about people's experiences on Cimzia.

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Cimzia was my 4th biologic and 4 times has been the charm for me. It’s been almost two years for me and it still is keeping my fingers and toes from swelling, which wasn’t the case with the other three. I am having some mild pain particularly in my toes. It’s not constant and it is tolerable. I suppose it’s just a mild flare. My rheumatologist has a few of us who have failed on other biologics but have responded well to Cimzia.

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I don't seem to be getting notifications of replies and thought this thread had died. Sorry about that.

Jules - I think there's a concern that the TNF inhibitors just don't seem to be working for me, so if the Cimzia doesn't provide any relief then we may try a different type of drug. Though there's also talk of changing my DMARD (mtx) as well since I've been having GI issues to the point that I can't handle NSAIDs anymore. We'll see where Cimzia takes me first though.

cece - I'm glad you're having some relief from Cimzia :) It's always reassuring when there's someone with experience with it.

Scienceteach - any luck with the Humira?

I've only taken my first loading dose - so no real benefits yet and so far my only side effect has been some increased fatigue - but that seems to be my usual reaction to new medications. I did find the injections super weird - the thickness of the medicine is just super weird and it kind of creeped me out that I could feel it under my skin after the injection. I made all sorts of faces at my g/f. However, it was much less painful than the Humira and Enbrel shots, and so far I didn't get any site reactions (though my skin kind of turned white at the injection site for a bit, kind of like an old psoriasis scar, which was weird).

Nym - have you started Cimzia yet?

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After a month and a half on Cimzia I'm still flaring a bit - the heat tends to get me stiff, swollen and achy (the other day my hip locked up so bad while I was putting the water pitcher back in the fridge I had to get my gf to rescue me from it because I couldn't turn).

With that said, I seem to otherwise be feeling SO MUCH BETTER - more energy, less fatigue (though still fatigued, it's just not as bad), less stomach issues though the Cimzia does seem to be a bit of an appetite suppressant for me (not necessarily a bad thing as I need to loose weight anyway and I'm still eating 3x a day) and I'm not bloated half the time anymore (hey, pants fit better! Don't look preggo! Don't feel like I'm packing around a gallon of water in my midsection. That's nice). I have far less days where I just feel like poo in general, though still experiencing a lot of stiffness and joint paint and swelling. Also my psoriasis seems to be returning (ugh - I've been clear a year, now it's back!). Only other negative side effect I've noticed is some dry mouth, though it seems to be getting better. Just means I drink more water.

Still hopeful that if I give it time it'll start to work. Have a checkup with the Rheum in Sept, so we'll see what happens then.

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That’s great that you’re seeing some benefits! I’m on humira and when I first started the only real benefit I had was more energy - much like you.
Now that I’ve been on it a while it has massively helped with swelling and pain, to the point where I’m able to walk properly again… Hopefully you will continue to improve with cimzia …

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@golfnut Me too! Thanks! You’ve encouraged my hope that there’s more improvement to come. I’m glad the Humira is working for you :slight_smile:

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Just an update. Doctor has taken me off Cimzia and now we are on to Cosentyx. I think the thinking is that the TNF-inhibitors don’t seem to be providing relief so we’re going to try a different route. Cosentyx is an interleukin 17A inhibitor, pretty new on the market, but apparently has shown some pretty good results so far in both my current Rheum’s patients and studies.