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.
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.
How many specialists did you see before finding "The One"?