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The Power of Positive Action Pt. 2

I’ve been injecting myself with the Rebif (interferon beta-1a) disease modifying therapy three times a week since January 2010. On the whole I’ve tolerated it pretty well – I even used to look forward to the thrill of the injection in the early days.

Yes, the flu-like symptoms were a pain (especially on the occasions when I – by choice or otherwise – neglected to take a pain killer beforehand) but aside from that, it seemed like a small price to pay to keep my MS at bay.

Besides which, what were the other options? At least with Rebif and the Rebismart injector I didn’t have to worry the horse-size muscular injections of Avonex or the daily injections of Copaxone. It really did seem to be the best option for me.

And at my annual check-up with my Neurologist in March 2014, we were told that Rebif was still classed as a front-line treatment, amongst the best of what is out there.

Fast forward to the start of this year. Injection site reactions have been getting worse and flu-like symptoms have been hanging around seemingly forever. With injections on Monday, Wednesday and Friday, if I’m feeling human on a Sunday it’s a good week. But sharing the care for an energetic four-year-old, that’s not really an option.

So rather than wait to see my Neurologist (the appointments seem to get further apart. I’m due to see him in July), I called my local MS Nurse team, outlined the issues we were having and made an appointment there and then.

Well, what a difference a year makes!

The MS Nurse we saw on this occasion said that they no longer tend to prescribe many injection-based treatments, preferring to get people started on oral therapies (the first choice of many patients too, I’m sure!).

She also mentioned the fact that people on some beta interferon injections can sometimes start to produce neutralising antibodies, reducing the effectiveness of these drugs. So this might be one reason why my side-effects were getting more intense.

This particular nurse (Maxine) always seems to have a tote bag with her that is full of booklets for different therapies, and she did not disappoint this time. This booklet from the MS Trust is particularly good.

We talked the options through, explained our concerns and my side-effects, and were particularly interested in Tecfidera (dimethyl fumarate), which has been shown to reduce relapses by up to FIFTY PERCENT – beating the “by about a third” which gets bandied about for the more old-skool injection therapies. I’ve since confirmed with the MS team that this is where I want to go, so the wheels are now in motion.

Maxine vowed to talk the Neuro I’ll be seeing, and to arrange another MRI for me – I haven’t had one since the MRI which led to my initial diagnosis and we need to check my lesions, especially because I’ve recently been experiencing a bit of new-ish Neuropathic Pain (mostly intense burning beneath the skin).

I found my previous MRI experience traumatic (to say the least) – on that occasion I chose a compilation CD which my brother had done for me as the soundtrack. I’ve haven’t listened to it since!

So here’s a question for you!

What do you choose? New Age meditation music? Avant Garde Jazz? [the option I’m currently leaning towards] Or are you one of the lucky ones who can sleep through it?

Visit Part I of Steve’s The Power of Positive Action series.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Seasis05
    4 years ago

    Seasis05

  • Seasis05
    4 years ago

    I was on Avonex for 15 yrs before switching to Tecfidera, which I’m very happy with (no more injections!!)…during MRIs I listen to Christian contemporary music (I am in a band also) which helps me calm down (or not, depending on the song!) & takes focus off what’s going on around me. Good luck!

  • Tracey
    4 years ago

    Advant Garde Jazz. But I sleep thru it, and get a bit resentful when the guy running the MRI feels the need to let me know when the sounds will be changing…I’m fully aware sir. Just let me sleep thank you.

  • barbnp
    4 years ago

    MRI-I close my eyes and say my “Alphabet Prayers”. I start with A and say a prayer for someone whose first name starts with that letter. I proceed through the alphabet and if I have time, I start over but can’t repeat the same person. It gives me a chance to think about people that I know, some that I haven’t seen since childhood. It requires concentration so I can’t think about all the banging around me. Good luck, Steve!

  • L Grah
    4 years ago

    I sleep through it.

  • MArroyo
    4 years ago

    I am in the middle of the same transition. Having taken Rebif since 2004 and Avonex for years prior, I’ve been taking injections for MS for over 17 years. But we’ve been watching my liver functin numbers carefully and the most recent ones were NOT good. So it was time for a change. My Neuro told me to take a 2 month break from all MS meds to help the liver heal. I am due to start Tecfedera in mid July. Very relieved!

    MRIs are somehow relaxing for me. My mind wanders sort of like a meditation. I don’t ask for music at all. The most recent MRI tech really wanted me to watch some action movie!

  • Theresa
    4 years ago

    I too, went from injections (Copaxone) to Tecfidera. As far s MRI’s go I recommend Valium 🙂

  • MArroyo
    4 years ago

    Do you like the Tecfedera?

  • Steve Woodward author
    4 years ago

    As a musician myself (who knew there were so many here?!) maybe I should try to jam with it.

    The French musician Charlotte Gainsbourg did a great album which was at least partly inspired by her own MRI experiences:
    http://en.m.wikipedia.org/wiki/IRM_%28album%29

  • Kim Dolce moderator
    4 years ago

    Steve,

    Tecfidera is what I’ve been taking since 2013 and I tolerate it better than Copaxone, Rebif and Tysabri. I fall asleep inside MRI tubes, lol. The banging, groans, and ringing sounds lull me! It’s no wonder–I’m a former jazz musician 🙂

    Kim

  • Guitar-Grrrl
    4 years ago

    Steve, good luck with the Tecfidera. For MRIs, since I’m a musician, I tend to have a little jam session in my head with all the rhythmic noises the magnet produces! If you’re a Jazz fan, I’ll bet you could do this, too.

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