Monday 17 August 2015

Rebif: a breakup letter - "it's not me, it's you"

Dear Rebif,

I thought this would be a hard letter to write. We've been together for 5 years now and we've had some good times.

You were exciting when we first hooked up - I remember the thrill of those first injections, how much I looked forward to seeing you again.

I loved the clunky Eastern Bloc stylings of the RebiSmart auto-injector, while at the same time using apps to track my injection sites made me feel like I was living in the future. It was the best of both worlds, and on top of all that I was taking charge of my life and the progression of my disease.

And I can't deny you've been good to me - thanks for helping me remain relapse-free since 2012.

But things just haven't been working between us lately - you can't deny it.

I would never sneak around behind your back. But I'm ready for the next stage of my life to begin. I have been getting closer to Tecfidera and I'm hoping things will work out between us. I had hoped you would be happy for us, after all we've been through.

But the last couple of months - even though the writing on the wall is plain for all to see - you've been kicking and screaming like a petulant child.

The injection-site sores, the bleeding, the endless flu-like symptoms, the weakness, the swollen saucer-like lumps under my skin, the bruises.  Surely you can see that it has to stop.

Later this week I'll have my last injection. I'll be taking two weeks off - to get my head together and flush you out of my system. That sounds harsh but it's the way it has to be.

Hopefully I'll then begin my Tecfidera treatment. But there's a chance it might not be possible - it will depend on the results of my blood tests - we'll have to see what happens, I guess.

Thanks for being there over the last five years. I really do appreciate the relapse-free years which you gave me.

But after the last couple of months, I'm officially over you.

Two more shots to go.

Much love,


These are my personal experiences of living on Rebif / beta interferon. It worked for a long time and has kept me healthy. I'm incredibly lucky that it was even an option for me, let alone one which I've broadly tolerated. The change in medication has only come about through consultation with MS Nurses and Specialist Neurologists - again, I know how lucky I am.

And changing my medication might not even alter the natural progression of my MS down the line. But it's got to be worth a shot of if makes day to-day life a little easier.

See you on the other side!

Monday 10 August 2015

lucky bugger

Just a quick post to say that the other week I was visited at work by an Occupational Therapist - actually the same OT who visited me a while back.

We had a good chat about what had been going on and she set about looking about my work environment - previously she had suggested I get a swanky new chair and funky monitor holder, so she was pleased to see these in action.

Then she had a look at the layout of the office. Barring a couple of drawers and a filing cabinet, this is what the room looked like - I know, these illustrations are frankly amazing - and I'm not even a professional draughtsman!
layout one
She watched me walking through the door and getting to my desk. And said with beautiful simplicity, "Why don't you move your desk over?"

It's always annoying when someone points out something so blindingly obvious. But it's amazing the difference it has made. Check it out (honestly, no training or anything - you could almost be there...):
layout two
Another way in which I'm incredibly lucky is that, on the afternoon before he went on holiday, my boss helped to get the room straightened out - crawling around on the floor, trailing cable, making sure it worked.

I know there was probably a bit of pre-holiday demob happiness at work but still - he didn't need to.

As I've said before: COME AND WORK IN THE ARTS - the pay is shit, the perks are few but you'll [mostly] end up working with nice people.

Friday 7 August 2015

up and down like a bride's nightie

The magnificent John Shuttleworth (Sheffield's premier songsmith) yet again sums up my life. Warning: this song contains a slightly blue lyric.

So I finally got a letter from the neurologist who had eventually seen my MRI. At the top of the letter was the following titbit:

In a truly mind-boggling display of my inability to see the bright side, I read this as I don’t have Secondary Progressive MS YET.

After being told to actually read the bloody letter properly, I realised that this was the same as me saying that I don’t have cancer or ebola yet – e.g. while this is true at this point in time, it is no more useful than me saying that I haven’t been run over by a car YET or I haven't lost a limb in a bizarre gardening accident YET.

So I eventually accepted that this was the good news that I hadn’t allowed myself to expect.

(although the reference to a "very pleasant gentleman" made me double check that this letter wasn't intended for someone else)

I think my problem is that I know the way that MS tends to play out – 10 years after an initial diagnosis of relapsing remitting MS the majority of people (as high as 80%) will be re-diagnosed with Secondary Progressive MS. Subconsciously I was trying to prepare myself for the worst. And yes, I know that this is probably the way that this beast is going to play out but it's not particularly 'mindful'. Or healthy.

So earlier this week I toddled off to the MS Nurses to talk about my switch to Tecfidera... which was a less upbeat meeting than the one we had before.

The Nurse wasn't quite as sold by my need to change medication, quoting much more conservative relapse-rate stats, as well as pointing out the two (so far) instances of Progressive multifocal leukoencephalopathy (PML) in people taking Tecfidera - one fatal.

An aside: PML would be the correct acronym for 'Piss Myself Laughing' - and yet PMSL seems to be the favoured choice amongst 'young people' in their illiterate texting. What a world we live in...

Seriously - these are the things which wind me up! I am an OLD MAN.

According to the nurse, in these cases the doctors hadn't known to check the white blood cell count of patients before starting the therapy.

I'd gone into this meeting expecting to be sent away with a prescription so this was a bit of a kick in the teeth. But I went off to have my bloods taken there and then, prompting the following waiting-room hilarity...

Another Aside: There's an Italian-themed coffee shop by the entrance of the hospital. I repeat - this is in a HOSPITAL. This coffee shop is called Fonta Nelle... FONTA NELLE... Fontanelle? Just me?

So I was really pleased to get a call from the MS Nurse team yesterday - although my white blood cell count is on the low side, this might be a side-effect of Rebif. Aside from that, there's no reason for me not to switch meds.Yay.

I'll take a two-week break from Rebif (handily coinciding with a holiday we're taking) then toddle off to the QMC for more blood tests, another chance to get any further questions answered, and then I'll hopefully walk out with my first load of pills.

I know that this could be the start of a whole OTHER world of issues but I am so over injecting. The side effects from the pills can't be as bad - can they??