Thursday, February 12, 2009

Drug of Choice

I had my annual check up with the MS Clinic yesterday. Aside from discovering that on my last MRI (a year ago) I had a new lesion, everything is going tickety boo. I did the stupid PASAT (or piss at as I call it) test, put the pegs in the holes and walked 50 feet. Yay me.

I had a great chat with the NP at the clinic, Trudy, about some of the drugs in the pipeline for MS. I was excited to discover that there is a current study of fingolomid for PPMS. Of course there are about 30 drugs currently being investigated to treat MS. I asked about the oral treatments, as I've read on other blogs about some serious side effects. And yes, they are pretty serious side effects. At this point in time, the injectables are still your best bet when first diagnosed.

I wasn't looking for info about these drugs for myself, as I told Trudy. Avonex is working for me and I am dealing with the ever lessening side effects of it. I am also coping (usually) with the weekly psychological effort of the shot. Trudy told me that if the Wookie's away again, and I just can't bring myself to do the shot, call the clinic and come in for one of the nurses to administer the shot. That was in the back of my mind always, but I was relieved to be told it was OK to do that. So relieved in fact, I was surprised at my feelings.

Anyway, Trudy said of the new oral meds, just because they're new, doesn't mean they're better. The DMDs have been around long enough to determine long term effects. Copaxone has been in use since the mid 80s! And if you're using something that works for you, stick with it. In other words, if it ain't broke, don't fix it. I was asking about the newer drugs mainly for information purposes, for my (3) readers.

Of course there are some MSers who can't tolerate the drugs despite their best attempts. Either the drugs don't appear to be working or the side effects are too hard to handle. But as I mentioned, there are 30 drugs currently being examined, so if one type doesn't work, you can try the next one. Remember, 15 years ago we had next to nothing.

Trudy was also very excited about a presentation she had attended earlier in the day by a researcher from the Mayo clinic whose field of study is early MS on the molecular level. With evidence mounting of permanent damage done in the early stages of inflammation, early treatment of MS by getting onto one of the DMDs as soon as possible is your best bet of prolonging the time between onset of MS and disability. And this is what I have been counseling people to do when asked by those newly diagnosed. I also tell them that they need to get on the 'net and do some research, and I'll point them in the right direction.

I had 20 months between the onset of symptoms (and diagnosis) and my first dose of Avonex. I enrolled immediately in a drug trial and ended up on placebo for those 20 months. Did I end up doing permanent damage to my brain? I'll never know. Would I change my decision about enrolling in the drug study? Nope.


1 comment:

Lanette said...

Glad to hear you had a positive MS Checkup! Yay you! I can't imagine only seeing my Neuro 1x a year - that's awesome!

Thank you for the update on the new and old MS Drugs!