So I wanted to add a discussion on Cosentyx since it’s so new and I haven’t seem many people discuss it yet. If anyone has, please add what you know/have experienced on it!
I was switched from Cimzia to Cosentyx at my last Rheum appt after being on Cimzia for about 3 months, following almost a year on Humira, and a couple months on Enbrel. So far the first three didn’t really seem to help much. The Humira, we thought, was providing some relief (thus the year on it), but earlier this spring I started flaring and just haven’t really stopped. (Lots of pain and swelling, but some good days interspersed, so not the worst it could be but definitely not the relief we’re wanting to see from the biologics). While the other three are all TNF inhibitors, the Cosentyx is an interleukin 17A inhibitor (from what I understand just a different part of the inflammation chain).
What I’ve read is promising, so far (though, as always, cautiously hopeful). It appears that the side effects are supposed to be fewer and less severe than previous biologics while also working a little better, especially for those not seeing relief on other biologics. In addition, it also seems to have some dosing flexibility (if I’m remembering correctly). The lower dose is 150mg, higher 300. So one shot vs two for each dose. I’m on the lower dose, with the idea that if it’s not effective we can raise the dose.
What I wanted to do here is just provide my experience with it, for anyone in the future who might be interested (I know it’s been really helpful for me to read others’ experiences of the different meds, even though my experiences aren’t always the same, it helps). So hopefully this is helpful to someone
So far, I’ve taken 1 shot, on Saturday. The injection pen is different from the Humira and Enbrel pen - no button to click (it starts the injection based on pressure on the head of the pen - so you uncap, press to injection site, and the injection starts), and it seems that the needle is smaller/shorter(?) - in any case, it seemed less painful to me than the Enbrel and Humira. I was actually able to inject into my thigh (so many tummy injections it was starting to bother me, lol). Did leave a small quarter/half-dollar size bruise and bled a little, but otherwise, so far, no injection site reactions. The bruise isn’t even tender.
So far since Saturday, I’ve experienced a fairly significant rise in fatigue. Sunday-Tuesday were pretty much just me wanting to crawl in a hole and sleep (unfortunately work got in the way of napping). While this fatigue seemed more severe than what I’ve experienced starting the other biologics (not counting the first week I was on MTX which was a doozy), this is still pretty typical for me when starting a new medication. Seems my body doesn’t like processing new things and it just makes me sleepy. Usually, the fatigue get’s less severe at each subsequent dose until I only have the day after hangover. Hopefully the same will happen here.
With my fatigue I’ve had some minor nausea and lack of appetite - but sometimes that’s just a part of my fatigue. Sleepy me doesn’t really like food.
I’ve also had some sore/dry throat and runny nose - but it’s fall so could easily be fall allergies picking on me (these are also listed as side effects though, so I’m mentioning them anyway).
Otherwise no ill effects. Not really sure if it’s helping the joints, but I don’t really expect to see a lot of relief until the loading doses are completed (Dosing schedule is one dose each week for five weeks, then one dose every 4 weeks - can’t wait to get to the once every 4 weeks.)
I’ll try to update once a week or so - and reply to questions (for some reason I don’t get emails about replies regularly, so apologies if I’m bad at continuing to engage in the conversation) for at least the first five weeks + the first maintenance dose - or as long as I’m on it.
UPDATE 0.5 [9.16.16]: Chatted with the nice lady from Novaritis (my “Patient Services Liaison”) and thought I’d provide an update concerning that. From our short phone conversation it’s pretty similar to the other Support Programs from the other biologics. They’ll send me a sharps container and I can contact them with questions. We’re still waiting on insurance approval for the Cosentyx so I’m sure we’ll have more contact later - but the Doc gave me samples for the first 5 injections so we’ve got a while. Apparently, not letting this on will help with the insurance approval some, so interesting bit of information there. Sounds like Cosentyx might be the first med I’ll have to receive via mail - probably due to it’s relative newness to the market (that’s my assumption right now).
Otherwise, I still have some fatigue, but much less than earlier in the week, and still no signs of improved joint pain. But it is also raining here so I’m just achey today.
Also - enjoying this ability to update the original post. Yay to the new platform.
UPDATE 1 [9.19.16]: Took my second injection this past Saturday (the 17th). This time the injection stung, similar to how Enbrel and Humira would sting. I also ended up with a bit of a welt and some heat at the injection site but that was gone by the next day so not terribly worried about it.
Fatigue is also much less severe this time around - which is nice, though I’m still having a bit of an uptick in fatigue. I’m also a bit swollen and stiff today - mini-heatwave crashing through the midwest I’m sure is aggravating up a mini-flare (for some reason my joints really, really, hate heat the most).
So far no other weird side effects, which I’m very happy about.
UPDATE 2 [9.26.2016]: Third injection went well. Apparently the shots hurt less in my right thigh than the left, so t hat was nice. Welted a little, but a benedryl took care of that.
While the fatigue is less severe than previous weeks it’s still there. Actually took last Friday off because the combination of the fatigue from my injection and the fatigue from a flareup due to the mini heat wave was too much - so I slept all day.
Still not much abatement in symptoms - currently fighting some finger and rib pain, but still holding out hope. Good news is that we can up the dose if needed so hopefully I won’t be on a new med in three months.