My experience of cosentyx

So every four weeks on Instagram I post a photo of my wee face and my cosentyx injection. Every month without fail this photo is my most liked and commented on. Lots of fellow users and new users with questions about my experience on it, and it occurred to me I don’t think I’ve ever done a post on this topic.

There are so many taboo side effects that occur after using cosentyx, and it’s so important to realise what you’re going through is normal. You are not alone. As always, if I have to be the one to say “Once after I injected, I pretty much pooped my pants” so be it. Because chances are you, or someone else on cosentyx, has gone through the exact same experience.

So here we go.

*DISCLAIMER it goes without saying I am not a medical professional (I am barely professional in my actual career), that my experiences are mine and mine alone and that every body is different.

What is it?

Cosentyx (proper name secukinumab, good luck on pronouncing that) is an immunosuppressant that reduces the effects of a chemical substance in the body that can cause inflammation. Cosentyx is used to treat moderate to severe plaque psoriasis (raised, silvery flaking of the skin), ankylosing spondylitis, and psoriatic arthritis in adults. It comes in a pre-filled injection (like an epi-pen)

How often?

I am fortunate (*touches wood*) that I only inject one 150mg injection every four weeks. I can sometimes feel it wearing off a bit towards the end of the month but by and large one jaggy a month does the job. Some people inject on the same day every month. There is no clear-cut answer as to what is right and wrong as we’re all told different things. But me, every four weeks.

How do I get it?

Being UK based I don’t need to worry about insurance etc. My rheumatologist decided to put me on cosentyx and a few months later I had a lovely nurse round for a cuppa tea helping me do my first injection. Lloyds Health at Home are responsible for my deliveries. They phone me from Glasgow every so often, ask a few security questions and then ask how many pens I have in stock and do I require a new sharps bin. We agree on a delivery date and the day before the delivery arrives I get a text message confirming the two-hour delivery slot. My Mum will very kindly go to my flat during the delivery slot to take my delivery. It needs to be signed for and only by people who I specify can sign. So, it’s me, my Mum, JP and my next-door neighbours. The box is then popped in the fridge but never against the sides of the fridge. Don’t want them freezing. It’s not an ice pole. If I need a new sharps box then I seal up the full one and hand it over to my driver who gives me a new one. I work with a girl who gets her biologics delivered to the office as there is nobody at her home during the day, so this is also an option if you’ll have nobody at home during the slot.

Pre-Injecting

I take my pen out of the fridge and leave it on my lounge table for approximately 20 minutes until it is no longer cold to touch. (Pens that are really cold tend to hurt a lot more than those at room temperature). I also inject after I have eaten my evening meal and always on a Friday night so that I have the weekend to deal with any side effects (I appreciate I am super lucky to not work weekends which allows me to do this).

The Injecting

I choose to inject in the top of my thigh. Either thigh will do, but if I’m able to remember which I injected in the previous month then I will inject in the other. But I seldom remember. In fact, I never remember. When sitting down and after I’ve wapped my trousers off, I place my palm flat on my thigh, with my fingers touching my knee and the part of the thigh touched by my wrist is the area I’m gonna aim for.

I then use my thumb and middle finger to mark the spot I’m going to inject by pulling the skin taut. I go through my required checks (is the pen in date? Has the seal been broken etc.), remove the cap and then press the injection down in to my leg.

Hold for around about 10 seconds until you hear the injection click off.

Remove, pop the pen and the cap in the sharps bin.

I sometimes have a small spot of spillage, but I wipe this up with a piece of toilet roll and pop a plaster over.

Does it hurt? Nope. Not really. Sometimes it feels a little bit stingy, and some are more stingy than others but honestly in the grand scheme of pain, it is a walk in the park.

After Injecting

I always take a bath. There is no real reason for this other than I really love baths.

After I have injected I start to feel a bit ‘groggy’. A bit tired. Just…groggy. I don’t feel sick, I don’t have a headache, nothing like that. I just feel like I want to get in to some comfy pyjamas, snuggle under a blanket on my bed, cuddle my cat and read a book.

My Side Effects

(Remember my experience of side effects is not representative of everybody)

  • Sinus problems. I’ve always had problems with sinuses but as soon as I started injecting they went up a notch. I had sinusitis, genuinely, for about 9 months solidly after I started injecting. I’ve visited my GP on many occasions and was prescribed numerous nasal sprays. After this initial never-ending bout it did start to subside. I do still sometimes suffer from sinusitis (I spend about a day feeling like I’m getting a cold and panicking that I’m getting a cold and then going to die from flu before I remember, it’s my sinuses) but between nasal sprays, decongestant tablets and just accepting the fact my face will hurt a bit, I;m now able to just get on with life.
  • Yep I said it. Poopy. Within about 30 minutes of taking my injection my tummy starts to feel churny. Churny is the only word I can use to describe it. A bit like a washing machine on a gentle spin. It growls a little bit and spins some more. The next morning I would then proceed to be really quite ‘poorly’. This however started to creep into a few days after my injection. I would have little to no warning of needing to go. I mean literally I sometimes had as little as 30 seconds before thinking I needed to go poop and then doing poop. This then started to occur on random days during the month. I saw my GP and he had a good feel of my bowel and said it was inflamed, likely IBS triggered by cosentyx. Poo is up there as one of the, if not the number one side effect of cosentyx. It is very common. I proceeded to send my poop off in the post (sorry royal mail) to confirm it wasn’t cancer and then monitor my symptoms. I can now narrow it down to being triggered by certain foods (garlic, onion and peppers). The day after injection, sometime between 12-24 hours after, I do still have these ‘toilet troubles’ but I know to expect them and can manage my life around it
  • Again, I’m going there. Cosentyx gives me wind like you would not believe. Even my cat runs away. This mainly occurs for the first 24 hours after my injection.
  • Lip infections. What do I mean by lip infections? Well, it occurs exclusively on the left side of my lips. It’s not a cold sore and it’s not just dry lips. It’s a really weird one. It does get dry and it does crack but it’s also prone to then sort of…weeping. Horrible I know. And it causes me *a lot* of pain. GPs in the past have prescribed different topical creams and nothing seems to really work. If I am more than 1 meter away from a lip balm then I honestly start to panic. I apply it pretty much every 15 mins. My lip balm of choice, because you were wondering if Blistex Med Plus. Accept nothing less.
  • Weight gain. This is a controversial one. The side effect leaflet does not say weight gain. Medical professionals are split on this one. Some people find they lose weight on cosentyx. But not me. I am not that person and if you ask other people online (not just cosentyx users but biologics in general) this is very much a very real side effect. I have gained a mammoth 2.5st/16kg in weight in just over two years. The majority of this on my tummy, the rest on the tops of my legs, my boobs and my chin. The word I use to describe this weight gain is uncontrollable. I simply do not have any control over it. I last weighed myself at the end of December and know that if I went to weight myself again today I would be heavier through no doing of my own. I am always very conflicted over how I feel about my weight gain. On the one hand, I accept the weight for what it is because cosentyx has given me my life back. But I am also a girl with a history of disordered eating and body image issues, so it’s also very hard for me. It took me a very long time to ‘accept’ that I had gone up quite a few dress sizes and no sooner did I buy size 14 trousers do I now find myself in the position of likely needing to go up a 16. As somebody who was a toned size 8-10 just prior to my diagnosis this is still something I am getting used to. But then when I weigh everything up (pun very much intended) then I’m ok being chubby, wobbly and soft, because I am living life again.

 

General Observations

  • Speak to your medical team if you want to get pregnant whilst using cosentyx. This is not a conversation I’ve had because I think children are the spawn of Satan, but I think you need to be off of it for a certain amount of time etc.
  • Compared to methotrexate I have pretty much ZERO fatigue
  • Whilst I don’t have any inflammation I do still have ‘general joint pain’ and need the odd painkiller or two, and this is absolutely ok. Cosentyx doesn’t cure all.
  • I haven’t required any regular blood work on cosentyx but some people find they do. Your rheumatologist will be able to advise

 

If I have missed anything or you have any further questions please get in touch with me. I’m trying to get my head around how best to film myself with my trousers down (steady on now) and injecting so that I can show you guys how it’s done.

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Just your average 30 something trying to bumble her way through life with inflammatory arthritis.

One thought on “My experience of cosentyx

  1. Injected a few days early today as I’m going on holiday this friday,which is my inecting day, and made the drastic decision to inject this morning.. Sorry work colleagues.. I’m half an hour in and already regretting my decision to leave the house.. A blog post all about my experience with cosentyx is going up on the blog at m and I’ll link it in my bio.. .. .

    Like

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