the Waiting Game

i’m playing that waiting game again – patiently waiting to hear the word that the new drug manufactured by Biogen has been approved by the FDA (it was submitted earlier this year for a “fast tracked” approval – 10months time which would mean that we should be hearing something any day now).  I’m this close {-} to deciding that i will switch to it once it becomes available just so that the dark cloud looming over me right now (the risk of contracting PML) can go to hell!  of course, it will be a new drug…so there are risks there too but…

I really do hate to have to make these kinds of decisions.

yesterday my phone rang; it was Cmus and he said that he’d seen something about “something called BG12 on CNN that has proven to slow down the progression of MS so i didn’t know if u knew about it, so wanted to share…”i instantly got excited because i thought that it was approved.  Alas, it hasn’t yet but i couldn’t believe that i’ve reached the point now where i get excited because new drugs may be available to me – whoa!  when did that happen, funny how priorities in ur life change as things happen.

even tho the drug companies have made progress over time, it’s unfortunate that all the available therapies are only for patients with the relapsing remitting form of the disease.  there isn’t anything available for patients with the progressive form.  I’m assuming (i don’t know) that they can take the other drugs that some of us take (Baclofen, Zanoflex etc) but there are no disease modifying drugs available for them.  it’s time that someone/a company takes that on.

anyhoo, so more to come…u know i’ll let allyuh know how things progress.