Tysabri: A personal quest, disappointment, and a question

Dear friends,

After I developed neutralizing antibodies to Betaseron a couple of years
ago, I was told to take Copaxone.

I preferred not to, since I saw it as a whole lot of stabbing for a drug
whose effectiveness is marginal at best and whose mode of operation is
unknown, according to my reading, I therefore wanted to get on Tysabri
ever since I heard of it. (My brother works for Biogen, so I knew about
Tysabri way before it was approved and I was impressed by its being, for
once, an MS drug which IS effective and whose mode of operation IS
known. To me, the slight risk that it might kill me was worth it.)

I was thrilled when Tysabri was approved in the first place, was
thunderstruck when it was pulled off the market, and was exultant when
it came back on. Okay, says I, let's go!

It wasn't on my HMO's formulary, but I lobbied hard, got my neurologist
to do so too, and the HMO (Kaiser) eventually approved it. Hooray!

But then my hopes were dashed again when, in the required training, my
neuro learned that Tysabri could be prescribed only for
relapsing-remitting

, not secondary-progressive, which is what I have.

Despair.

What to do???

My wife has a friend with MS whose neurologist puts her on a maintenance
dose of steroids every summer to minimize progression, but I'm concerned
about the known bad effects of long-term steroid use. Years ago, my
mother was given prednisone long-term for rheumatoid arthritis, by
doctors who didn't understand the side effects, and the side effects
eventually killed her.

Punch line: do you folks have any suggestions?