My New Dose of Cosentyx Put Me Into a Flare

By Nicky Flikas

2 min read

Once a month on Fridays I have picked to have my injection day. You would say I have gotten use to it by now, but every time this day comes, I still get anxious and nervous. This Friday was my new dose. I've been on Cosentyx for 3 months. It’s been my 4th biologic and my longest one that I have been on. My rheumatologist decided to increase my dose to two injections once a month, instead of one injection once a month. I had to take 2 injections this time and I was more nervous than ever.

The day of

The day of my Cosentyx shot, I like to take the injections out of the fridge about 1-2 hours before I plan to inject myself. This way it gives the medication enough time to be at room temperature and prevent having any pain, stinging, or burning. I find Cosentyx has been easy for me to inject and my most favorite med. Sometimes I have to make sure that I actually did it right, because I don’t feel anything when injecting. Which is a good thing!

What day do you like to take your biologics?

I have chosen to do it on Fridays. The reason I picked Friday is it gives me the whole weekend to recuperate, in case I don't feel well. This way if I need to stay in bed and rest, I am able to do so. I usually try not to make any plans during these couple of days. I make sure also to drink up and keep myself hydrated to prevent feeling the "hangover" that biologics can bring on some. I can sometimes get really bad headaches the day after. I find drinking tons of water helps.

I am wondering how do you feel after you take your biologics?

I can sometimes get lucky and feel good. But then there's times where I can also get extremely fatigued and weak for a couple days after. I know everyone is different on how they react. My last injections of Cosentyx put me in a flare. I felt horrible. I was in pain all over my body, with no energy to do anything. My pain kept me up all night feeling awful and wishing I could just get some sort of sleep from the exhaustion. It has been hard to find a treatment that can help my AxSpa and fibromyalgia. Finding something that can help treat both has not been a success yet.

I still can't tell if Cosentyx is helping, but I have to keep hope

I know they told me it can work slowly and see the full benefits 6 to 12 months. So I am trying to give it some more time and keep reminding myself I need to be patient. Let's hope this will be my last biologic.

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Jvernice Member
I find that medical cannabis helps with my spine and joint pain. Delta-8 also helps me sleep and is legal in many states. I am 64 years young and I got my card about a year ago. I have advanced stage 3 ankylosing spondylitis and has been on and off opioid pain management for about 15 years. The medical cannabis enabled me to reduce my opioid use. It’s not for every ones that suffers from this disease, but it has been beneficial to me. I only use it in the evenings as I am a fairly active person despite 25 of my 33 vertebrae being permanently fused (some intentional, but most self-fused). Give it a try and let me know if it works for you as well. Be well!😎
1. Jvernice Member
 <inline-mention username="Nicky Flikas" user-id="2484107"/> , yes I have been on biological for a few years now. Unfortunately, like so many others on this board, it took way too long to get a proper diagnosis; probably 20 years too late. I have so many issues that point to AS and just had a hip replacement on Tuesday, so I’m off my Enbrel for a few weeks and taking more narcotics than I like. They couldn’t even do a spinal anesthetic because there are no suitable epidural routes along my spine. I hope you find relief with your pain. Let’s talk again soon. 
2. Nicky Flikas Moderator
 Hi <inline-mention username="Jvernice" user-id="4232099"/>, I am a little late on here to read your message. I am sorry. I hope everything went well with your hip replacement today. Please let us know how it went and hope you had a speedy recovery. Sending you lots of warm hugs, Nicky (Team member)
Lisa Marie Basile Moderator & Contributor
First of all, I’m glad you are on a treatment. I know that it is still early, but I’m glad that you are treating and managing this disease. Second of all, I haven’t tried Cozentyx yet (loooong story involving Covid and insurance stuff), but I’m supposed to get on it this year. I can speak about my experience using Humira, though! I injected on Thursday evenings. At that point in time I was going out on weekends, so I didn’t want to risk being exhausted or having a biologic hangover on the weekends. On Fridays I was allowed to work from home, so my injections on Thursday nights worked out pretty well with that. I often felt soooo very tired after my injection. Sort of like the Covid vaccine. A stupor. However, I had to come off Humira because of infections. It sounds like you have a good thing going, and I hope your flare ups are less and less! Good luck with them. 
1. Nicky Flikas Moderator
 Hi <inline-mention username="Lisa Marie Basile" user-id="2108259"/>, I am sorry it is taking longer than expected to start on Cosentyx. I know how it can feel to want to start as soon as possible and see if it will help with your AS. I hope you get to start on it soon. I haven't thought of it like that to start on a Thursday. Maybe I will look into moving it to that day instead of Fridays. I thought Friday would be enough time to enjoy the weekend, but it takes longer once I inject to feel better. I find the same it makes me feel so very tired for couple days. Are you currently working remotely? Wishing you well and hope you start soon and let us know how it goes. Sending you my best wishes you way and hope your doing well today, Nicky (Team member)
James Hollens Moderator & Contributor
Hi <inline-mention username="Nicky Flikas" user-id="2484107"/> , Fingers crossed for you that this treatment will be the one that works for you and you won't have to change again! Did you feel any different after taking a double dose this time around? It sounds like you have a really good schedule for your injections too! I do mine on a Monday which can sometimes write off a bit of the start to the week. Maybe I should switch to Friday too, as I am no stranger to a weekend hangover haha! Hope you are doing well, James (Community Member)
1. Nicky Flikas Moderator
 Hey <inline-mention username="James Hollens" user-id="2107776"/>, Thank you so much for your wishes. I think it is helping in small ways. I guess in the beginning it was hard to see the small changes. As I was expecting to much out of it. But now that I see where I was and where I am, I can call this progress. Yes I do my injections on Fridays. I figured it would give me some time to feel a little better and pass through the biologic hangover I get some times and be ready for work Monday. Do you get that when you inject? But then again doing it once a month, means maybe one weekend would be just to take it easy more. Even though most weekend, are mostly spend taking it easy. Hope you been well and sending you hugs, Nicky
Anna Samson Moderator & Contributor
I'm glad Cosentyx has been helping you! I hear you when you say that sometimes you feel good after your biologic but other times you don't. It's very hit or miss and makes it hard to know what to expect. I like your idea of doing it on Fridays so you have the weekend to recuperate if you need it. Maybe I'll start doing that too.
1. Nicky Flikas Moderator
 Hi <inline-mention username="Anna Samson" user-id="4164139"/>, Thank you so much. How have you been feeling and doing? Yes, I figured even though doing my injections on Friday would give me more time to get through the hangover you get sometimes from biologics. It might mean staying in on the weekend and taking it easy, but either way most weekends are spend like that anyways with resting. I try to keep my energy for work during the week. Weekend have been resting and trying to do some house work. Let me know how it goes if you change you injecting date. What day do you usually inject? Sending you hugs and wishing you well. Nicky (Team member)

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