It's Been One Year on Cosentyx

By Nicky Flikas

Last Updated:

4 min read

It's been one year on Cosentyx for axSpa. How does time just fly by? It feels like yesterday that I got my diagnosis—but it has been almost 3 years.

Cosentyx has been my longest medication and biologic that I have been on for axSpa. I am guessing that's a good thing. It’s been my fourth biologic and the one that has given me the least side effects. I have also been on Cimzia, Taltz, and Humira. They all gave me really bad side effects, except for Cimzia, which lost its effectiveness after my loading doses.

Cosentyx for axSpa

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

I am no longer on sick leave. I have returned to work with a new full-time remote job that I love. I have found more balance in 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 all of my tasks that need to be done in a day, which I wasn’t able to do at all before. It’s all about learning to space out everything and have lots and lots of patience with yourself. It’s what I call pacing.

I now have days when I can walk longer. I have days when I can stand and sit for longer periods. Before, I wasn’t able to do this. I wish it were more consistent, but it’s not. The days I can do all this come with days when I am not able.

Still waking up with excruciating axSpa pain

I still have pain that is unbearable and makes me cry. I still need 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've noticed that I get relief about 2 weeks from Cosentyx—and I'm stretching it! By the end of the second week, I start to get a wave of extreme fatigue. It’s kind of feels like I got a beating and hit by a bus at the same time. I also noticed that I start to feel unwell, like I have the flu, but without a fever. This can last until I take my next dose of Cosentyx.

Is Cosentyx really working?

I'm not really sure if Cosentyx is improving my axSpa symptoms. It does help reduce the number of flares that happen every day, which gives me a break here and there, but I've still been getting flares. They just don’t last long. For a while, the Cosentyx was helping with fatigue, which was helping me do more things during the day. It has also helped me with my IBS symptoms. I skipped my Cosentyx 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, the doctor thought Cosentyx wasn't helping my axSpa. He believes I am not absorbing Cosentyx well enough. He actually wanted me to switch to Rinvoq at my next appointment, which is a biologic that you take in a pill form every day.

In the meantime, he wanted me to keep trying Cosentyx for my axSpa. We agreed to switch frequency from once a month to every 2 weeks. I still haven’t seen any difference. I've been in a flare again for the past 2 weeks since coming back from vacation. I understand that taking medication is trial and error—finding the right combination can take time and luck. But I wish I were one of those lucky ones who go into remission with just a couple of tries.

Unsure about a new medication for axSpa

Starting a new medication would mean having to be patient once again. I would have to wait and see if it works. It can take a couple of weeks to months to see if a new medication is working and right for you, and 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 feels without biologics and while taking my pain medication when needed, following a healthy diet, and trying to stay active. I even thought of trying to see a naturopath.

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

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Rebecca C Member

<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 Member
 
 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 Member

<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 Member

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)