Thursday, 19 March 2009

My MS History - Part Six

For the story so far...
After one more session of double-checking with Dr S where he had yet another student in tow - it seemed I was becoming a textbook example of nystagmus - it became apparent that the steroids really hadn't done their job. So to suppress my existing symptoms I was prescribed Gabapentin. As you can read elsewhere on this blog, gabapentin turned me into a zombie. Being a vegetarian and not at all into human flesh eating, I decided to ditch these drugs at Christmas 2008, for the good of my (and everyone else's) sanity.

Parallel to this, I had been given details of Disease Modifying Drugs (DMDs) prior to this meeting and using a slightly out-of-date MS Decisions website, made my choice which I was going to spend the foreseeable future taking...

... and then I made it again.

I had a choice of four DMDs, either Glatiramer Acetate (Copaxone) or one of the three Beta Interferon drugs - Rebif, Betaferon or Avonex. The choice was more of a case of elimination as none of the drugs stood out as being the obvious choice.

Copaxone was rejected because it was a daily injection and I didn't fancy the possibility of panic-attack style side-effects. It also hadn't got the clinical trial track record of the Beta Interferons.
Avonex was rejected because it was an intra-muscular injection and once a week. I wouldn't say that I was frightened of needles by any stretch of the imagination, but I didn't fancy dreading the one day every week where I would need to plunge a two inch needle into my leg muscle and then enduring any side effects over the weekend.

Betaferon was rejected because I felt that mixing the drugs every other day would become a bind. I downloaded videos off YouTube and these backed me up - too much of a faff.

So Rebif it was - sub-cutaneous injections three times a week but with the downer that it had to be kept in the fridge.

Eventually a large box with all the gubbins turned up with my monthly courier. By all the gubbins, I mean travel cool-bags (one large, one small), rebijector (injection pen), supporting literature, diary, "passports," sharps bin, injection site cushion (that I could heat or freeze), and the medication itself.

Two weeks at 8mg and two weeks at 22mg, and then I could expect a delivery of the 44mg syringes.

I have to say that I did get flu-like side-effects with Rebif, but it's a case of knowing when to take them. I noticed that it took a while before any nastiness kicked in, so if I remember, I take them relatively early in the evening and then sleep through the after-effects. I also take them on Sunday, Tuesday and Thursday to keep the morning-after hangover in the more-managable work environment and away from family quality time. The worst day of side effects happened when I had the mother of all hot flushes, stepping out to my car at 6am in just a summer dressing gown, thinking that it was quite mild, only for it to be minus seven when I checked my in-car thermometer later.

I found that the side-effects became less severe after about three or four months and if I get any side effects now, I don't notice them.

All-in-all, I have been quite lucky with Rebif. Nothing as bad as the horror stories I have read in online discussion forums. Of course, it's early days and it remains to be seen if the drugs do their job of slowing down the disease's progression.

2009 update >

1 comment:

  1. I guess I'm going to be having these conversations in the next couple of weeks, but my current thinking is that I'll take the big needle so that I can have a once-weekly injection that doesn't need to be kept in the fridge. Sort of a hobson's choice, isn't it?