DH considers discontinuing Avonex
DH has been on Avonex for many years, since way back when his now secondary progressive MS, was relapsing remitting. Lately he’s had a terrible time the day after his weekly injection. That first morning after he’s much weaker, can’t walk, or even sit up and in general, feels like crap. These are not the flu-like symptoms often connected with the use of Avonex. He had those in the early days of his Avonex use. These are different.
This worries me since Avonex can prevent further damage to the nerves. However, DH is determined. He has agreed to discuss this with his neurologist and I plan to be there when he does. I’ve done tons of research, hit all the MS sites I could find, and yet there is very little information on secondary progressive MS and what can happen if one discontinues the use of Avonex at this stage.
I plan to bring a list of questions, what ifs, what we might have to expect if he stops the drug. I also plan to ask about Fampridine, if the FDA approves it, when it will be available.
I would appreciate hearing from people who have secondary progressive MS and their reactions to the information and care they have available.
Posted on January 6, 2010, in MS related, My blog and tagged Author, Beads, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Coffee, comedy, Craft of writing, Crafts, Dead, Disability, Doggoned, Family, Fiction, Healthcare, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing. Bookmark the permalink. 2 Comments.
Doggonedmysteries 
Drug metabolism is a multi-step process with the drug being converted into a different compound at each step. It may be that DH’s body has adpated to the Avonex in that one enzyme in the process is converting it to a compound that makes him feel like crap faster than the next enzyme can do it’s job and change the nasty stuff into something else.
The other possibility is that his body is no longer able to produce the enzyme(s) that metabolize the Avonex in sufficient quantities to break down the drug and he’s getting more active drug than usual. A rough parallel would be the difference between downing a shot of straight bourbon (hey, what else would I use as an example?) and chugging 8 ounces of straight bourbon. You’re going to feel a whole lot more like a pile of ca-ca after slamming back the 8 ounces.
A third possibility is that his body now ‘recognizes’ the Avonex as an alien compound and ‘attacks’ it much more vigorously than before. This isn’t a full-blown allergic reaction or anaphylaxsis. That’s a whole different process. This is just a much more exuberant physiological response to the Avonex.
Whatever the reason, a brief Avonex-free period followed by re-instituting the drug may be the way to go. Stopping the Avonex may allow DH’s body to ‘reset’ it’s mechanisms to normal.
Thanks, Dave. I had DH read this.