Thanks, Marc.
I got FTY-720 mixed up with Tysabri because a friend was in trials for both. The Tysabri was stopped because of PML (it was still called Antegrin, I think, then).
About 2003 or 4, I signed up for an FTY-720 trial, because I had read somewhere about researchers watching mousey T-cells migrate to their spleens on it.
They had been about to randomize me, and one day called to tell me I was taken off the trial because I had been declared to be "SP". I think this was because I had had bad flu like symptoms on high dose Rebif, started and had worse problems with Avonex, and asked for a prescription for LDN. I think I was put on their enemies list at that point, and declared "SP".
I asked to try Copaxone after the hearty LDN refusal. I had still been on it, when the "SP" declaration was made. I heard about mitoxantrone, which they said was the only thing left to try. I said I would rather go back on Rebif. They said all I could do was try mitoxantrone. After not having anything happen with Copaxone, I finally started mitoxantrone.
The doctor who supervised the chemo told me I could stay on Copaxone. The neuros overruled him, said it was a "not approved" combination, and called my pharmacy to make sure it was stopped.
I only lasted 3 infusions of mitoxanrone. I had read that it caused inevitable cardiotoxicity. I didn't do well on it after the Copaxone was stopped.
Since then mitoxantrone has been found to be "synergistic" with Copaxone, mitoxantrone has been found to cause "delayed" heart attacks, and I have had one.
I then went on the MBP8279 trial. I was randomized to placebo, I waited 2 years, because of the one year "washout" of mitoxantrone, and another year of delay while they hired a replacement researcher. If I hadn't been "SP" when they cancelled the FTY720 participation, I finally was, by the end of another 2 years on placebo. I had also had the heart attack and had stents put in.
Nothing much else happened until I saw Dr. Zamboni on CTV, determined to have it, and joined up here. I had Dr. Siskin's angioplasty in Aug 2010. I had been told it was "nonsense" by my neuro, but by this time I had negative faith in them.
Wish I had never asked them for LDN. Hindsight is great, as I and George Bush Jr. have discovered. I might still be eligible for Gilenya (FTY720) even if I had become "SP", because they tend to "treat" research subjects of successful drugs.
BTW I have huge hydrangeas at my front porch. You can make tea out of the leaves, I think, or maybe the roots.