My history with DMDs: I used to be a believer. Now I realize that the momentum of a lot of house, car, executive jet, land, and other large-ticket purchases based on expected continuation of use of this medication by large numbers of people, is the reason for the continued promotion of these drugs, to the detriment of anything seen as competing with them. That is also the reason that, instead of having lower prices in a market filled with competition, the prices have continued to rise, and every new product costs more than the last. Greed has no antidote.
I started off with lower-dose i-1A (I will avoid brand names). Then the higher-dose studies came out and I dutifully asked for and got it. Then the confounding factor: I started asking about LDN. I told my doctor: if she didn't give it to me, well it could not possibly do any harm and I would try to get it anyway. Big, big, big mistake. I thought I'd temporarily stop my i-1a. No chance, sucker. No more i-1a for me. I was spms, now. I was in the middle of trying to get onto a study anyway, fty-720. I did a lot of research, and found out they had actually watched fluorescing mousie T-Cells on TV, and this drug made them all go hide out in the mousie spleen! Meanwhile my friend was on antegrin on a different trial, so I though I'd buy a few shares just for a laugh.
Then my number came up. I was being randomized for the fty720 trial. I called up the researcher, and said, couldn't they hurry that up, as I was afraid I was progressing and would not last till my appointment with them before I was ineligible. My second big, big, big, mistake. A meeting of the appropriate people was convened, I was declared past the required maximum EDSS, and the place in the trial was given away.
In protest I took my wife and a couple friends on a 500 meter walk to prove I could do it unassisted, but that was not any help to anything but my ego.
Meanwhile people were dying, and my friend was taken off her trial. I lost my investment in her drug. Funnily enough, the one drug I never invested in was fty720. She is on that now, having got onto a later trial I was excluded from, and is still taking it. She is still considered "RR'MS'", while I have gone from a cane to a walker to a wheelchair and back to a walker.
Since that time I have also tried and been refused re-prescription of glatrimer acetate. It was prescribed 'on the sly' by a different doctor on temporary replacement. I also tried, and deliberately stopped mitoxantrone. I have the personal belief it was directly responsible for my heart attack four years later. One of the reasons I stopped the mitoxantrone was that they had unilaterally withdrawn my glatrimer acetate prescription, to keep themselves kosher or whatever. Just as that was happening, the study was released to the public, about mitoxantrone's synergy with glatrimer acetate. Just to rub it in.
I did get on a nice long multi-center randomized controlled trial of a drug, that was treating exactly what they said I had: "SP'MS'". They called it MBP8298. I was told I had to go through what ended up as a 1.5 year "wash-out" period, because of the mitoxantrone, and of course could not take anything like a DMD, while on the trial.
After it was all over and I found out that it was ok, because I had been on placebo for two years anyway, I asked to be put on antegrin. They had actually promised that they would put me on it. They refused, saying there was now no hope left. Zamboni came along just after that. I was not desperate.
I had learned that the drugs they gave me were as likely to hurt me as to help me, sometimes more, and that they were much much more likely to make somebody else rich. That's why they are there. It came as no surprise when I heard about the kickbacks.
I lost some money, but not nearly as much as some of their other marks. I had a heart attack, and ended up with three stents, I live a fairly lonely life, typing at TiMS a lot. I am completely disconnected with the so-called 'MS' Clinic I used to go to. They will have their reward in heaven. Mine is here.