Thursday, 28 February 2013

exactly where i'm at

A double-header 'Steve's Little-Helpers' post.

I've been taking Rebif since January 2010, with little-or-no (TOUCHING WOOD FRANTICALLY) side-effects. Weirdly, it's such a massive decision - your Disease Modifying Therapy of choice - but I can't remember loads about the decision-making process.

Rebif is one of many trade-names of Interferon beta-1a, co-marketed by the 'lovely' people at Merck Serono and Pfizer.*

But I know that the things that swung it will have included the RebiSmart gizmo - I am a man of a certain age and I do likes me some technology.

HOWEVER there's something clunky and "Heath-Robinson" about the Rebismart - the whirrs and beeps and clunks sound a bit STEAMPUNK, really.

shonky pic of the RebiSmart screen
It's quite sensitive so you have to insert and remove the needles quite carefully - insert it perfectly straight (or as close as possible), remove by pushing it away from you (see shonky image)

I've had a couple of issues with needles getting stuck (long-nose pliers to the rescue) and - hilariously - the batteries running out when I was in the middle of injecting - "Hmmm, why is it taking so long...?"

The main thing for me is the fact that I don't need to see the needle - if I'm going to be doing this three times a week for the foreseeable future, I could really with it being as UNTRAUMATIC as humanly possible.

And yes - there is an option to check how much charge your batteries have left...

There's even an option to track your injection sites but I've never used that, because I've been using the i-Inject iPhone/iPod app, pretty much since I started on Rebif.

The author on Monday evening
This is quite pricey for an app but it can do lots of helpful things - reminding you to do your injection, email info to your doctor, organising any oral meds, record reactions etc.

The main thing I use it for is to track injection sites, making sure that these are rotated regularly - like most people, I have my 'favourite' sites (front of thighs, my butt) which I could happily keep going for (until the itching reaction just gets too much to take) - this keeps me on track.

Also (unlike other apps I've tried), if you really don't fancy going into a site, you can just choose something else - I'll do anything to avoid injecting into my upper arm (especially my right arm).


* A CYNIC WRITES - last year, Merck Serono brought out a plush magazine and a free iPhone app called MySupport. In my more cynical moments I can find myself wondering - if there's this much money in the treatment of MS (neither plush full colour magazines printed on heavy-stock paper which are mailed out at no cost or iPhone Apps are particularly cheap to develop and distribute) - are we EVER likely to see a cure?

But that sort of thinking is really not helping anyone, is it?


6 comments:

Ms. CrankyPants said...

My goodness, that IS an exciting gadget. It most certainly was not available when I was on Rebif! Now I'm on Copaxone, which has a pre-Industrial-Revolution-looking clunky injector thingee in which you stuff the needle, jam device against your skin, and push a button. There's a "snap!" noise and the needle injects. Most certainly preferable to the DIY version. But it's nowhere near as cool as yours. Damn Copaxone!

p.s. I too HATE injecting in the arms. In my case, it's probably because they are rather spindly and cooked-spaghetti-like, and the skin underneath has gotten hardened and painful.

stevedomino said...

ha - the RebiSmart is kind of pre-industrial itself! i might do a video the next time my injection site is SFW - you can guarantee that this will be one of the times when the needle jams and i turn the air blue...

The iPhone app i mention can be set-up to track all of the 'big hitter' DMDs - including Copaxone.

i'd be interested to know why you switched from Rebif (if it's not too personal)?

Ms. CrankyPants said...

Love the idea of a (SFW) video! And I'll investigate that app. Right now, I track my injections with another antiquated system: in a notebook provided by the friendly folks at Copaxone.

No, not too personal at all: I had an especially bad relapse while I was on Rebif. An MRI revealed that I had some new, big lesions and bloodwork confirmed that I had developed a resistance (?) to Rebif. I was on it a good three years with no problems, though.

stevedomino said...

thanks for sharing!

next injection site is in my gut so won't be videoing THAT. i guess any site which isn't my hairy man-ass is a possibility!

Honeysuckle said...

Hi Steve,

This response is for your friend, Cynic. Have a look at:
http://www.brassandivory.org/2011/03/rising-price-of-ms-disease-modifying.html

Thank you NHS.

Hope you're well.

All the best,
Honeysuckle

stevedomino said...

Apologies if these appears twice - first attempt disappeared!

Thanks for that link. A lot to take in but MAN those are some big numbers! More considered response to follow.

But yes, God save the NHS.