Roll the Dice
When I was first diagnosed with MS, I was determined that I would put off getting involved with any Disease Modifying Therapies (DMTs) for as long as possible. And that was all well and good for a while – it gave me the opportunity to work on eating and living in a healthier way than I had been previously.
Fast forward a couple of years, when I had two relapses within a couple of months, and my Neurologist and Specialist MS Nurse Team were very much advising me to start a DMT.
I remember we read a lot of information about the different options that were available to us. The idea of starting something which would require daily injections just seemed like it would be something which could have too much of an impact on my life.
Besides which, when we drilled down into the options, they all seemed to promise... well, not that much. Rather, they all SUGGESTED that they MIGHT reduce relapses by ABOUT a third.
[AN ASIDE - a future blog may be about the strangely slippery nature of this condition – seriously, if you had to describe MS as a physical state, you'd HAVE to say it was GASEOUS. Think about it, we all know our own symptoms, and there might be some commonality with other peoples, but there's never a sense that you can put your finger on it with any precision.
And this horrible vagueness – which is particularly noticeable at the point of diagnosis – seems to carry on into the realm of medical professionals.
“oh yes, what you're feeling MIGHT be a relapse...”, “…that COULD help....”, “SOME PEOPLE find that this can be positive...” - DOODS, just give me some facts!
Hilarious role-play aside, I do appreciate that it must be equally frustrating for the professionals. But y'know, we're living with it.]
Anyway, we came out on the side of the Rebif brand of interferon beta-1a for a few reasons:
- The injections are only three-times a week, so not too intrusive as far as my extensive social engagements* are concerned (* translation = children's parties with my daughter).
- I'm not massively keen on injections (no tattoos, no piercings, no rock'n'roll needle fetishes) so I was recommended the RebiSmart auto injector. (Note: RebiSmart is currently not approved for use in the US)
This is basically an oversized iPod (but clunkier and a bit steampunk – like a fat Zune) which completely hides the needle from view. It can also track your injection sites and prevent you from injecting on consecutive days. And if, for some reason, it doesn't make total contact - I know I've flinched on more than one occasion - it knows that your injection is incomplete and asks you to try again.
You have the option to change a number of variables - the speed of the needle, and the depth and length of the injection. After messing around with these needlessly in the early days, I reverted to the default settings, which suit me just fine, thanks.
Another thing I did in the early days was I questioned the need to take Ibuprofen / Paracetamol before I did my injection. The MS nurses said this would help with the flu-like symptoms which might result from injecting Rebif. So I experimented with not taking the painkillers.
Take it from me - DON'T DO THIS! The flu-like symptoms you might get from a regular injection with a recommended dose of painkillers are NOTHING compared to the shivering mass of palpitations and chest pains that you'll suffer.
I've been on Rebif for four years now. The injection site reactions haven't been too bad, I just need to keep rotating where it goes and avoid really hammering my 'favourites'.
Has it helped me? I don't know - that vagueness again! I've only had one relapse since I started taking it, which I know is good going - one neurologist I saw said the average was two a year.
But in the same period I've taken supplements, had physiotherapy and cognitive behavioural therapy amongst other treatments. All of these go into the mix.
What do you consider to be the most effective tool in your life with MS?
How many specialists did you see before finding "The One"?