The sting

Well, I’ve been taking Copaxone (Glatiramer Acetate) for about a week now. I administered my first injection under the gaze of my wonderful MS nurse last Monday.

When I was on Rebif I didn’t really inject into my arm or leg, favouring the fattier parts of my anatomy. It has been my arse and my belly that have borne the brunt over the years, frankly, and as such, I am only now, months later, starting to lose the red patches below my navel.

Injecting with Copaxone however is a more serious prospect in terms of injection site reactions. You really do need to set up a rota of sites to pierce as sustained injecting into one area can cause the destruction of local tissue – quoting my newly copaxone-free friend: “You don’t really think about your ass till it’s kinda disappeared.”

It’s particularly important as my injections are now part of a daily regime rather than being a three-times-a-week occurence.

The thing they don’t tell you is how much it HURTS…

“Yeah, it’s like a bee sting,” smiled my nurse, breezily. “I thought I’d tell you AFTER you’d injected.”

Bloody hell!

I felt like my daughters might have felt after they’d walked a mile, on a promise, to the local ice cream factory and found the little hatch had shut early.

It took about an hour for me to be able to bend my arm again.

I asked my friend if the pain got better over time. “Maybe a little,” she lied.

To be fair, the arm is the worst. I can shrug off the pain in all the other areas, but with the arms, I can’t even shrug. It’s like those “dead-arms” we used to administer to each other as an endurance style contest at secondary school… bruised and pummelled limbs hanging weakly at our sides to the puzzlement of our teachers as we entered each lesson.

The plus side is that a daily injection is easier to remember than a Monday, Wednesday, Friday injection. Particularly if you have trouble remembering what day of the week it is or how old you are, like I do.

A tip I learnt off YouTube is to take one of those Sharpie pens and write the days of the week and the injection site on each of the packets. So it might say “Monday left bum,” “Tuesday left leg,” “Wednesday right leg” etc. I also now know a new spot on my legs as well (top rather than side) so that will break things up rather nicely.

Today is “Tuesday left arm” though, so not looking forward to that, particularly as yesterday it was “Monday right arm.” I’m gonna have to rethink my rota, I reckon.

Anyway, in six months time I will have built up enough Copaxone in my system for it to start properly working. It’s the best option for me right now. I’ll keep my ears to the ground with any new developments in disease modifying treatments, and I can always ditch and switch if anything better becomes available.

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7 thoughts on “The sting

  1. Hi Dave,

    It gets better, promise.

    Though tbh, I’ve abandoned injecting my arms because (i) it was painful, always and (ii) the bruising looked as if I were a victim of domestic violence.

    At the suggestion of my MS Nurse, I reinvented my injection cycle to include the abdomen, which I’d hitherto avoided because it hurt. I reduced the dial to 6 in the abdo (now painless) and increased it to 10 for my legs : fat thighs, thin tum (ha) and everywhere else 8.

    The stinging took a couple of months to go and now, almost two and a half years later, I only remember the sensation if I find virgin land, usually on those (big) thighs.

    To paraphrase Muhammed Ali, you sting like a bee before you float like a butterfly. And float you will.

    Good luck!

    • Now that I’ve ditched my arms as injection sites, it isn’t too bad. Plus I make sure I get up and walk around, hang the washing out, make a cup of tea etc, as a distraction. Cheers.

  2. Christ, I know it’s not for everyone, but reading this makes me glad I tolerate the long needle of once-a-week Avonex (and haven’t they just got approval for a fortnightly injection?). I have enough trouble remembering which thigh I’m supposed to be using for a once a week jab. You can also get a smartphone app that tracks injections sites, I believe.

    • I’ve seen the smartphone app, but it seems a faff when all I have to do is write the target and day of the week on each injection. It’s not too bad now. I’m not using my arms any more and apart from a little bruising on my belly, I’m side-effect free! Woo hoo! I think I’d have to use the injection pen if I were on Avonex. I don’t think I could face it otherwise.

  3. Call Shared Solutions (customer support for Copaxone) and ask them for a journal book to track injections – it’s helpful. Surprised they didn’t give you one. Ask about pressing on injection site afterwards, a nurse told me it was fine to do that and it really helped with pain. They call the tissue deterioration “dimpling” -such a cute word…you should see me after almost 15 years on it. They are battle scars from the fight, and fight we must. Trudge on!

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