Struggling with biosimilars

LSL20

Hey, I’ve been on Idacio for a few months after delaying due to Covid. I do the injections myself, but every time I’m really struggling more and more. So much so that I couldn’t bring my self to do it today 🤦🏼‍♀️😣 I keep telling myself it’s a positive and it will help me… but I just can’t help get anxious and stressed then upset. I know I can get someone else to do it for me but I can’t do that either. It’s not just the pain of the needle, which maybe hurts so much more because I’m so tense…I think it’s just frustrates me that it has come to this. As you can probably tell I’m struggling to focus on the positives 😬🤦🏼‍♀️😂 I appreciate I’m very lucky to be offered this treatment. So I feel silly saying this.

i wondered if anyone has any advice or feels similar?

💕

frogmorton

Hey @LSL20

This sounds really tough.

Like two issues here? one is accepting that this has to happen and you actually do have AS as well as maybe a little fear of the needle/pain?

When it comes to the anticipated pain of stabbing yourself! who in their right mind could imagine inflicting it on themselves? I mean really! We know, rationally that children inject insulin, yes we know this, but there is something which just makes it almost impossible to do.

I have told this story before, but it is relevant honestly! My youngest got leukaemia at 16 and had a needle phobia - they still talk about her on the ward as being the worst they ever saw. She needed 2 and a half years of treatment as you can imagine a nightmare. In the end I took her for hypnotherapy (they don't put you in a trance just deep relaxation) and it really really has worked. Honestly she's better than me now!

Just a thought.

As for struggling to accept your AS and that it has come to this we used to have a thread called 'acceptance'

I think I've found it:

https://community.versusarthritis.org/discussion/23619/acceptance

There are a huge number of comments on it maybe one or two will strike a chord with you.

Anyway l wish I could help, but am sending you some ((()))

LSL20

Hey @frogmorton

Thank you so much for your reply. Oh I’m so sorry to hear you and your family had to go through that with your little one, I hope they are doing well now 💕 Really puts things into perspective 💕 Maybe the hypnotherapy is something to look into 🙌🏻 I will take a look at the link too. Thanks again for your reply, really means a lot and nice to know there are people out there that can relate or you can just get things off your chest!

💕

frogmorton

Hi @LSL20

This really is such a lovely space to get things off your chest safe and supportive. You can relate to people and they to you.

I was only telling you Lucy's experience so you'd know you aren't alone. She is 23 now and doing fine🙂 I absolutely don't think your fear is at all unreasonable or unusual. Look into some sort of help with your 'mind' it is so powerful the mind. I have known people come in here who have been able to self inject for years and years and suddenly they just can't do it anymore.

Do let us know how you get on.

LizB12

@frogmorton What a lovely encouraging thread ‘Acceptance?’ When I am sitting comfortably I can forget that I have OA and that I will be ok soon. Then I stand up….

KazandNoo

Hi LSL20

I'm on Amgevita,a biosimilar,in pen form so I never actually see the needle. I was,however a bit anxious about the injection part as I'm not a fan of needles so my husband was shown by the nurse how to do them,and for me it's been a good option. He just gets on with it,whereas I know I'd faff around a bit and if I got it wrong in any way I'd put myself off them. And it doesn't hurt. And the treatment works and that is the most important thing for me.

A woman at work said "oh,I'd want to do them myself so I can say I can do this". I can understand that point of view,but we are all different and must do what is right and comfortable for each individual.

I know what you mean when you say you are frustrated it has come to having this treatment,I was in denial of what I had been diagnosed with for a long time,after failing several Dmards I was on prednisolone for a while,which was the only thing that really worked for me but of course you can't stay on it forever so I tapered off it and my condition flared up worse than ever,that was when I fully accepted I have psoriatic arthritis. I'm not over the moon about it but want to live the best life I can and so the Amgevita is accepted by me too. In fact,I don't know where I'd be without it. I know there are possible side effects and risks but I'm monitored by the lovely biologics nurse and have regular blood tests too.

I hope this helps a little,along with the other posts. Take care and let us know how you are.

Seamaid

KazandNoo having to inject yourself with a needle is a very daunting thing to have to do, Would it help at all if you were able to anaesthetise the area a little with a numbing spray _ a chemist could tell you about this. or, even deaden the area with an ice cube . so you would not feel the needle going in

LSL20

That’s amazing to hear @frogmorton 💕 Yes I agree it’s just a hurdle my mind need to get over, it’s like I’ve hit a wall. So frustrating! Thank for your encouraging words 🙌🏻

Hi @KazandNoo

Yes mines the same, like a pen, although a very big one 😂 I’m glad you’ve found a way which works best for you, that’s awesome, and so glad it’s helping you too!

Its nice to speak to others in a similar situation, definitely makes you feel like your not the only one. Ive had AS since I was 19, so 14 years now. It’s a case of when it’s bad it’s real bad, and I have gotten used to just ‘putting up’ with the daily pain on a nightly basis. The flare ups and night pain have gotten so much worse over the last few years that Biosimilars were the next step. I’m sure I’ll find a way to get over this hurdle, soon hopefully!

Ps Is anyone else fed up of constantly being told to ‘not over do it’ 😂 🙄🤦🏼‍♀️

x

LSL20

@Seamaid Thats a good Idea, I hadn’t thought of that, thank you 👍🏼 Although I don’t think that’s the only reason I can’t do it, but it’s worth a try 💕

Stantonrose

https://community.versusarthritis.org/discussion/55350/struggling-with-biosimilars

Hi there, I also self inject Benpali a biosimilar on a weekly basis, like you I become anxious leading up to the day I have to do it, quite a lot I would just not do it and leave it until the next week.

For me I think it is because it is just such serious medication and all the side effects that go with it, it really sorry me, you are not alone in this, I think there are many out there who feel exactly the same, absolutely nothing silly about it. It is what it is!

Anna

Hi @Stantonrose and welcome to the online community,

It’s great to see that you’ve jumped straight in with a supportive message for another member - you’ll find that everyone on here is helpful and supportive, especially since we all understand what the challenges are, living with arthritis of one sort or another.

i think the stories that are in the link below are really inspiring and reassuring so you might like to read them, and also a bit more about how biologics and biosimilars have revolutionised the treatment of inflammatory arthritis. It’s incredible to hear what life was like before for some people and how much it has improved - I hope that’s the same experience for you:

https://versusarthritis.org/research/research-achievements/anti-tnf-the-inflammatory-arthritis-treatment-revolution/

Best wishes,

Anna ( Moderator)

BettyMac

Hi lSL20

You're not alone in finding injectables an issue.

I’m on two of them, for RA - Methotrexate and Benepali.

Methotrexate on its own didn’t adequately control my disease and adding Benepali has given me back my life. I only wish I’d been able to have it 10 years earlier - then I wouldn’t have had to retire from a profession I loved.

I am reassured to know that controlling the obvious signs of disease - ie swollen, painful joints and loss of function/mobility - also controls the less obvious risks, such as damage to my major organs.

I find the Metoject pen very easy to use and do this myself every week. You get it in position, push it down and then fire the button to activate the needle

The Benepali pen works very differently. Pushing it against the skin makes the needle fire automatically and I just can’t do it.

I know it’s daft but I have a complete mental block and have to get my husband to inject me. My adult kids can also do my jab, if necessary.

To be honest, I don’t feel bad about this. I’m a recovered needle phobic and feel proud that I can at least do one of them myself.

if you live with someone who’d be happy to do your jab, that’s great. Or maybe you have a friend who could help? People actually do love to help, especially when they know they’re making a difference.

The important thing is that you get your dose every week. It really doesn’t matter who administers it.