It's Been One Year on Cosentyx

By Nicky Flikas

4 min read

It's been one year on Cosentyx. How does time just fly by? It feels like yesterday that I got my diagnosis with AxSpa--but it almost been 3 years. Cosentyx has been my longest medication and biologic that I have been on. I am guessing it’s a good thing. Right It’s been my fourth biologic and the least one to give me side effects. I have been on Cimzia, Taltz, and Humira. All which gave me really bad side effects except, for Cimzia that lost its effectiveness after my loading doses.

Even though I've been on Cosentyx for so long, I don’t really know if it is helping me. I have had good days and bad. Have I improved? I am really not sure. What I do know is I am not where I used to be a year ago.

I am no longer on sick leave. I have returned back to work to a new remote full time job, that I love. I have found more balance into my life. I have found more ways to deal with what is going on with my body when in a flare or not. I have been able to manage what needs to be done in a day with my tasks, which before I wasn’t able to do at all. It’s all by learning to space out everything and have lots and lots of patience with yourself. It’s what I call pacing

I have days now where I've been able to walk longer. I have days where I have been able to stand and sit for longer periods. Before, I wasn’t able to do this. I wish it would be more consistent. But it’s not. Days I am able to do all this, comes with days where I am not able.

I am still waking up in the middle of the night with excruciating pain

Pains that are unbearable and make me cry. I am still needing to take my pain medication every day to help me feel comfortable and to be able to do what I need to do like work. Let’s not talk about the weight gain and how my weight loss journey, which I wanted to continue, has been on hold. I was down 60 pounds before Cosentyx and have gained back 25.

Lately, I have noticed I will maybe get relief for around 2 weeks from Cosentyx. And I am stretching it! By the end of the second week, I start to get a wave of extreme fatigue. It’s like you got a beating and hit by a bus at the same time kind of feeling. I also noticed I start to feel unwell and like I have the flu, without a fever. This can last until I take my next dose.

Is Cosentyx really working?

I am not really sure, as it’s helped reduce the amount of flares that would happen every single day to maybe giving me a break here and there. I've still been getting flares, but they don’t last long. If that makes sense. For a while it was helping with fatigue which was helping me do more things, in the day. It has also helped me with my IBS symptoms. I skipped my injection for 3 weeks and all my IBS symptoms came back. Once I took my next dose, my symptoms settled down.

At my last rheumatologist appointment, my rheumatologist thought that Cosentyx was not working. He actually wants me to switch by next appointment to Rinvoq. It’s a biologic that you take in a pill form, every day. He believes I am not absorbing Cosentyx well enough. In the mean time, he wanted me to keep trying Cosentyx. We agreed to switch frequency from once a month to every 2 weeks. I still haven’t seen any difference. I been in a flare again for the past 2 weeks, since coming back from vacation. I understand taking medication is error and trial. Finding the right combination can take time and luck. But I wish I was one of those lucky ones. The lucky ones that get remission with just a couple tries.

I am not sure if I want to try another medication right now

That would mean to be patient once again. I would have to wait it out to see if it will work. It can take a couple weeks to months to see if a new medication is working and right for you. I don’t know if I have it in me right now. Part of me wants to take a break. Part of me wants to see how my body really will feel without biologics and just take my pain medication when needed, follow a healthy diet and try to stay active. I even thought of trying to see a naturopath.

I don’t know yet what I will choose to do. As Cosentyx has helped me, but not to its full potential. I don't expect it to be a miracle, but I do wish it was more consistent. I have been on many medications the past few years and the side effects where horrible. I will take Cosentyx over any of them.

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Rebecca C Moderator & Contributor
<inline-mention username="Nicky Flikas" user-id="2484107"/> - how are you doing since posting? It's November now and I am curious to know if you continued with Cosentyx or have trialed the Rinvoq daily. I take a daily pill (JAK inhibitor) and have found success. Haven't had a flare since starting it, and have rid myself of the 5-year-flare I suffered so long with. I was leery to try it as it was the 5th biologic I'd be on and I was terribly defeated by then. This disease wears on the mind, body, and soul (for obvious reasons). But thankfully, my rheumy has been very supportive of me, I've taken care of my mental health, and decided to jump in and try it, with success! I hope you're happy with your decision and that your spondyloarthritis flares are minimal and that your pain has decreased exponentially. Best of wellness. Rebecca (comm advc)
maisi Member
Sometimes it takes a while to see if a medicine is effective. For me, going off of Cimzia helped me determine that its minimal effects were no more. Of the 5 medications I have tried, Cosentyx has provided the most relief, though I still have extremely difficult days - a Flare came in like a hurricane yesterday. 
1. Rebecca C Moderator & Contributor
 Oh <inline-mention username="maisi" user-id="2108559"/>, I hope that you are feeling better from the hurricane-of-a-flare you are currently dealing with. I am sorry to hear even on Cosentyx you are having painful breakthrough flares. It does take time to see if a medication works - isn't it usually 3 to 6 months? When trialing biologics my rheumy used this period of time to determine whether a medication was effective. Hoping you find relief soon. Rebecca (comm advc)
2. maisi Member
 <inline-mention username="Rebecca C" user-id="2106882"/> Though many symptoms were consistent with a flare, I had intense throbbing OA pain in both thumbs, right index finger, GI upset, cramping in right palm, severe headache and a low grade fever. I have felt better progressively over the past few days. SO?? Rheum conditions are notoriously tricky!! It makes so much sense to me that the field is experiencing a shortage! Thank you for your well wishes.
Julie Vallortigara Moderator & Contributor
<inline-mention username="Nicky Flikas" user-id="2484107"/> Hello, I am sorry it's been quite a journey for you with the biologics...it's not easy for some of us to find the one that would make a big difference. Yet, as research is progressing fast in developing new biologics, including the ones which can be taken as tablets instead of injections, I wish you to keep faith and keep trying as we have more drugs on the market now than never. I am sure there's one for you out there, or maybe with time the combination of the ones you are on will work well enough. Take care, Julie.
James Hollens Moderator & Contributor
Hi <inline-mention username="Nicky Flikas" user-id="2484107"/> , I'm glad to hear that there has been a lot of progress in some areas in the last year with Cosentyx but sorry to hear that it left a lot to be desired in other departments. I think that it is a really important thing to review our progress on medications like too have done here! That is very interesting that they are recommending a biologic that can be taken in pill form. I did not know that was even a possibility! I understand the unsurety over whether you want to switch meds again, but hopefully you have a bit of time before your next appointment to have a think and go with whatever you feel is best for your body. Wishing you all the best, James (Community Member)

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