Hi everyone, I have a favour to ask... :)

LittleA
LittleA Member Posts: 3
edited 5. Nov 2019, 06:18 in Say Hello
Hi everyone,

Great to find this forum :)

I'm Alice, I was diagnosed with JIA when I was 16, and went through lots of medications before eventually ending up on enbrel injections, which suited me really well and got my arthritis under control. A few years ago I decided to stop taking it, because I was pain free and sick of injecting, and for a while I was okay, but over the last 18 months my condition has got progressively worse until I ended up going back to the hospital earlier this year. This time round they have put me on benepali, my first injection was last week. The injection itself was absolutely fine - I'd read some horror stories about this one being really painful! - but I've been feeling like I have the flu ever since. Hoping this passes soon and will just be while I'm getting used to it, though I'd be very interested to hear how anybody else is getting on with benepali.

Secondly, and I hope this is okay for me to ask here - I'm currently studying at university for my graphic design masters degree, and at the moment I'm working on a project about how, as a designer, I could ease the fear of needles/injecting, for those who have to take their medication in this way.

My idea was to create a new design for the injection pen itself, so that it looks less white and clinical, and the same again with the packaging. I also thought about making inserts to go inside the box, so that when the box is opened each week, there is a card inside with a positive message or image.

I know these are only small things, and on their own they won't remove a fear of needles, but I just wanted to create something that would take the focus off the needle even just for a minute or two. I liked the idea of lots of differently designed injection pens, so that each week it's a little surprise when you open the box.

Sorry for the long message, but I'd really love to get some feedback on the idea, along the lines of:
- Would a more brightly coloured or 'pretty' design on your injection pen, have a positive impact on the injection experience?
- If not, why not?

I'd also be really interested to hear about any experiences you have with injecting - does anyone here have a fear of needles? How does this impact on your medication? Back when I was taking enbrel, I used to panic days leading up to my injection, which is one of the reasons I stopped taking it. I am really hoping that due to my first benepali injection being pain free, I will find it easier this time round.

(These ideas are all purely hypothetical of course and just for my project - I fully understand that the injections are the way they are for a reason and that they will probably never change!)

Thanks so much for reading, I hope to get chatting with you soon.

Comments

  • moderator
    moderator Moderator Posts: 3,640
    edited 30. Nov -1, 00:00
    Hi LittleA,

    Welcome to the forum.

    I'm sorry to hear that you've had to live with Arthritis (JIA) from such an early age.

    I hope that the forum members can give you some useful feedback on their experiences with Benepali.

    I also wish you luck with your masters project and hope that members can give you some valuable input based on their experiences.

    If you ever feel it would be useful to to talk to someone about your condition then our help line number is 0800 520 0520.

    I hope you find the forums of benefit.

    Kind Regards
    ChrisB (Moderator)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I've been fortunate in that I have never had the option of stopping the meds as they've never been that effective for me but that's because they were all too little and far too late. I am positive that the sooner one is diagnosed and on the meds the better the outcome can be but I also aware that one never gets better, disease activity is merely controlled which, if that happens before joints are damaged, is a boon.

    I laud your ambition and kindness in wanting to make things more user-friendly but I am of an older generation when people were not as indulged as they are now. My first injections happened in early 1964 when I was five and I had both a no-nonsense mother and very firm nurse who each made it clear that it would hurt but not for long. They were right.

    I was not enthralled at the prospect of doing my own injections but understood that getting myself in a tizzy wasn't going to help anyone, least of all me. I also reasoned that Type 1 diabetics regularly did so if they could do it daily I could do it weekly. Enbrel was my first DIY jab and this was back when you had to mix, wait for the solution to settle to clarity then draw it into the syringe: it didn't bother to tackle the arthritis preferring instead to explode my liver.

    My methotrexate then became DIY with pre-loaded syringes which had stubby little needles but again it didn't hurt for long and was a huge improvement on having to go to the hospital every week for an experience that lasted less than three seconds. Now both my meth and humira are in pen form, in my hands for less than thirty seconds and their appearance, for me, is neither here nor there. They are a means to an end which go into a sharps never to be seen again. The important thing is that they function as they should - the amount of plastic bothers me but there is no alternative.

    One way that people on here manage the possible sting of the meds which are stored in a fridge is to remove them and let them warm through for thirty minutes or so before administration. Some rub an ice cube over the area to be injected to numb the skin, again to minimise the sting. There are times when I get a wobble before injecting so I prepare an immediate reward for myself, ensure there is a distraction such as the telly or radio to divert my attention or get my husband to chat to me; one thing that definitely expedites matters is if he offers to do it for me.

    Benepali is one I have not had but I hope it proves to be useful for you, these meds are not instantly effective and, as you might well have allowed the disease to become more active, there is more for the med to suppress. Have you had your flu jab? DD
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    Hi Alice and welcome from me too.

    I've not done injections of any DMARDS (I'm good on tablet meth and hydroxy) but I've had RA for many years and I think you were just in remission because you were on meds which were controlling things. As for benepali, well, as you're only just starting on it, I think the fluey feeling is more likely to be caused by the disease itself. Do contact your rheumatology team, though, if you're worried about it.

    As for the syringes, it's a kind thought. I can see young boys might like a gun one :lol: but I think most people on here report the difficulties of injecting with arthritic hands rather than shape, colour etc. Not wishing to put a damper on things but I'm wondering how they could be marketed. Price is everything in a market economy and any difference equals increased cost. I wonder if some who do find injecting physically difficult might be able to suggest ways of making it easier.

    Good luck with it, though and we'll done you for overcoming the arthritis to get so far up the educational ladder m0150
  • LittleA
    LittleA Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you everyone for such kind replies so far. It's nice to have a place to talk :)

    In terms of my idea, from the feedback so far I'm thinking this idea would work well for a younger audience, but perhaps not so much for adults (apart from the odd ones like me who like sparkly things maybe!)

    I will have a think about tailoring my target audience for children and young adults more so, though if anyone else has any views on this I'd still be very interested to hear more.

    I'm starting to feel like I'm over the worst of the flu symptoms today! Injection 2 on Wednesday :)
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    I like the sound of that last paragraph :D

    It might be worth asking diabetics too as there are probably more young diabetics than young arthritics.

    Even asking drug manufacturers their opinions are they'd presumably, be your target buyers.

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