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!


Anonymous said...

Sia nara Rebif. Bios con Dios. Here's to Mr. Domino for being an active MSer. (I only know a little Spanish. I think I said "see you later Rebif" and in the words of my crazy truck drivin friend. "Go with God.)


stevedomino said...

thanks JE!

Alice Thomas said...

Good luck with Tecfidera. The first couple of weeks can be hard. I dropped so much weight from my Tecforexia but I did not miss the sound of that auto-injector.

stevedomino said...

thanks for that, Alice - i'm picking up that the first few weeks are rough - also, apparently i need to get a taste for Peanut Butter which is tantamount to outright perversion. yuck - the things we have to do.

(i know, i know, big deal)

you have a great blog BTW!


Ms. CrankyPants said...

Steve Domino! I am alive and well, just THE LAZIEST PERSON ON THE PLANET. I cannot muster up a blog post or a witty comment on yours. That said, I do read yours faithfully and am always amused. Please don't go the way I did. I PROMISE I'll be back. It's nice to know you were concerned. Still here. Still cranky.

Ms. C-P

stevedomino said...

So good to hear from you Ms. CP!

I've often thought that you would be awesome on Twitter, it's almost the perfect format for you.

Unless you're already on Twitter, but you're just not following me. In which case you and me are through, missy.

THROUGH, I tells ya!

(Don't be a stranger!)


Ms. CrankyPants said...

Yeahhh, been on Twitter for ages. (Haha not really. Will Investigate.)

I made a creepy linked in contact with you a while ago. Mercifully, you didn't know who I was. But I'm there if you're ever worried about whether I'm alive or my blog expires.

stevedomino said...

That's strange, I'm quite the indiscriminate LinkedIn slut... I rarely knowingly deny links!

Ms. CrankyPants said...

Ha! You are! I meant that you accepted my request. I think I'd been unable to post a comment to your blog but wanted you to know I wasn't ignoring it. So I went waaaaaay overboard and lef you know via LinkedIn, you slut.

stevedomino said...

ah now i remember, you actually sent me a message via the Johnny Domino BandCamp - so at least that saves me trawling through LinkedIn.

i'm still a LinkedIn slut, btw.

Ms. CrankyPants said...

I'm slightly mortified just reading the lengths I went to. Stalkerish, really. As it happened I just needed to restart my computer to comment on that blog post. Let's forget I was ever such a psycho! Ugh