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Living with Psoriatic Arthritis (PsA)

Cosentyx (A summary of my experience so far)


#1

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 :wink:

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.


Cosentyx
#2

Keep us posted @SubliminalFlicker. I’d not heard of Cosentyx so thanks for being our resident guinea pig! I hadn’t realized you had already tried Humira, Enbrel and Cimzia. I’m interested in the relatively short times you had with Enbrel and Cimzia. Your rheumy seems really unwilling to wait on things (no judgement about your doc just that by comparisons your rheumy is a sprinter and most rheumy’s tend towards glacial speed). I, for one, am looking forward to reading a glowing report from you! :+1:


#3

I will @janeatiu!

Also to be fair, the Enbrel we stopped because of a terrible allergic injection-site reaction (softball-grapefruit sized bruises that were hot and welty and very painful and took weeks and weeks to heal- very unpleasant).

The Cimzia was short, but I was also clearly progressively getting worse while I was on it. No signs of improvement - other than getting rid of the residual side-effects of the Humira.

She’s been the most proactive Rheum I’ve had, which has been really nice.

I am really hoping for good things with Cosentyx - but I’m trying to remain cautious :sunglasses:


#4

Posted update above/on original post. Nothing really exciting yet. Though I wish it would kick in already. ~whine~ Trying to be patient, and also trying to quit smoking at the same time :smirk: Sounded like a good idea at the time?


#5

Good update - keeping fingers crossed that it helps. I’m also trying to quit smoking - it’s tough!


#6

UGH, quitting smoking is the pits isn’t it? But we can do this, and it will have positive health benefits (it’d better) so really, nothing to lose except a bad habit :wink:

Also, man I can smell everything this morning. Coworker brought in a cup of coffee and it’s amazing and all I can smell. lol.


#7

Third shot down - two more to go then we’re down to once a month injections. Insurance approval finally came in too so I don’t have to worry about not getting my next dose after the samples run out.

Update posted above - but still not much relief in symptoms. I know it takes a while so we’ll keep metaphorically crossing our fingers (because doing so in real life would hurt!).


#8

Fingers crossed!


#9

That is the greatest photo! :smiley:


#10

No new changes to report. Still in the midst of a flare - seem to have found the right fatty area for my Cosentyx shots so they don’t hurt (upper thigh seems to work best on me, rather than mid thigh). So far, it hasn’t kicked in all the way. Though, beyond the actual arthritis pain I’ve been feeling better than I was on Humira.

On a steroid taper for now, so I’m not sure if I’ll be able to tell when the Cosentyx actually kicks in. If it ever does. If that changes though I’ll update. For now I’ll let this thread be until something effectively changes that provides some information to share.

My final loading dose shot is this weekend, then we’ll be moving to monthly doses. Hopefully that works out - though there is always the possibility of doubling my dose if need be (that’s one of the nice things about Cosentyx).


#11

I am also on Cosentyx. It has helped my skin immensely, but I ended up having to add leflunimide (arava) to the mix. That seems to have helped until the holidays. Now I’m in a major flare. I think it’s the food, sugar, etc. I have been eating. :frowning: Nonetheless this flare sucks. I think I’ll be better once I’m back to my good habits. I couldn’t survive without it though I don’t think. I’ve literally tried EVERYTHING. This has been the most promising.


#12

I’m new here and I’ve been on Cosentyx for approx 1yr. Previously on Enbrel for about 10 yrs. Enbrel was great for PsA, but not effective on skin flares. Cosentyx has been great for skin, but not the joint pain. Currently having severe arm pain, can’t lift arm, shooting pains when grasping/lifting. Cosentyx, like all biologics, is expensive. Still trying to get on the right Medicare plan/supplement. looking forward to learning on this site.


#13

@groovyreba I was just put on Areva (leflunomide) a little over a month ago. Have been in a flare since early Jan with my left foot so swollen I can’t put weight on the ball of my foot. We’re hoping to keep the cosentyx because I’ve been tolerating it so well unlike everything else I’ve tried. Also doubled the dose about two and a half months ago.
@scratch - I seem to have less general pain on the cosentyx, but my foot is awful. I feel like it’s all a crap shoot sometimes. Hope you get relief soon!


#14

So far Cosentyx has worked the best for me out of all the thratments I have had in the past, my last injection x2 sensor ready pens was yesterday.

I to notice some fatigue after my injections, as well as an upswing in anxiety, that’s probably just me not liking to inject myself rather than a side effect hahaha.

Compared to Remicade, humara and otezla Cosentyx is the most effective and has the least side effects, humara caused me to have really bad headaches, otezla made me so naseaous that I could hardly eat or drink anything and ended up dehydrated and in the hospital for IV fluids.

I hope that your situation will improve, as there are so many variables to PsA I try to remember what my grandma used to tell me about the powers of positive thought, sadly I don’t remember much detail other than if you think and believe that it will work for you, there’s a better chance it will, if you say it won’t work and believe it then there’s a better chance it won’t.

Sounds rediculus but it kind of helps me.

Sorry for rambling hahahah


#15

Final Update - We’ve given up on the Cosentyx. The Leflunomide (Areva?) is also a no go due to side effects.

Still, out of all the biologics I’ve tried Cosentyx was/is my favorite simply because I tolerated it so well.

On to the next journey - we’re giving Otezla a try…


#16

I’m new to Cosentyx & I’m loving it! I started out with Methotrexate 12 years ago. Then took Enbrel for 10 years. I had to stop Enbrel because I was having side effects: tingling fingers & numbness; a couple swollen lymph nodes & weight gain. I was so upset because Enbrel kept my psoriasis under control & I had not developed the arthritis yet. I was convinced I’d take it forever! Lol! So then I tried Otezla for three months & my joints started hurting BAD!! And my psoriasis was not under control. It was horrid! The arthritis appeared after having psoriasis for 17 years. I was not happy! So I called my Dermatologist begging for something & fast! I work out & I’m super hyper & I’m on my feet at work for 8 hours; there’s no way I can live like this. She understood & she prescribed me Cosentyx. The fatigue does happen with this medication; for sure! But within days I noticed my psoriasis clearing. I have zero psoriasis right now! And I just took my first monthly injection after the four initial shots. I also noticed my joint pain was decreasing after 5-7 days. I rarely have joint pain now. I did notice that I started to have a little pain in my knuckles a day before it was time for my injection; which was expected. I am able to function normally & I’m hoping that Cosentyx keeps working for me! Just wanted to share my experience with Cosentyx. Good luck all!


#17

Thanks for sharing about the Cosentyx…I like to know as much as possible about the different biologics, because I feel sure eventually Enbrel won’t work anymore for me. It’s interesting how so many of us don’t see as much improvement of our psoriasis with Enbrel, but it sure helps the inflammation and stiffness–oh, and fatigue. Sounds like Cosentyx is better for psoriasis but causes some fatigue and doesn’t do as much for the arthritis.


#18

I had a very bad reaction to enbrel similar to what you described. First injection went smoothly. No side effects. 2 days after me second injection, I woke up scratching my leg. I looked to see what was up and there was a wide thick “blister.” It eventually turned into a patch of big, purple hard welts. The third day after the second injection, I woke up scratching again, this time the first injection site on my other thigh. There was a huge red blotch that lasted about 6 weeks. The welts lasted about 9 weeks. I spoke to enbrel support both days. They said 7 percent of patients have this secondary reaction. My rhumetologist took me off it when I told her nurse about the second reaction. :weary:


#19

Thank you for posting. I had my first Cosentyx last week and I am having similar side effects. Nice to compare with someone.


#20

It’s actually helped me with the arthritis a lot! I went from a 9 on the pain scale down to 0-1 and I very rarely have any joint pain anymore. I’m going back to my normal exercise routine finally & I’m very happy with this med! Let’s hope Cosentyx keeps on working!