dania wrote:I did not get this disabled overnight. It took more than 20 years. Dr Rosa said it was too bad I was not adjusted earlier on. He thinks if I had been I would not be so disabled.
I took 30 years. It was
too bad you were not adjusted earlier on.
Lest anyone think I am against drugs in general, I consider that part of why I am as disabled as I am is that I have been trying unsuccessfully, since before
I was disabled, to get put on trials for drugs like Tysabri (used to be Antegren) and Gilenya (used to be fty720) and now Fampyra, with no success. I have been excluded from trials for reasons which were more about the doctors and the drug companies than they were about me. The answer has been an unequivocal NO. Now I understand the makers of Fampyra are allowing people up to EDSS 7 to take it. I think that is because of failure to charge the same stratum of money, so a motivation to expand the market. My neurologist said it would only work for RRMS.
I think a lot of people are disabled unnecessarily because of doctors who are vindictive and egocentric and don't care about anything but clean clinical trial results leading to drug profits.
I was given 4-AP when I was definitely RRMS (still riding in the "MS" Bike Tour). Then some company applied the same technology that has been used on every vitamin and pain-killer out there. They made a time-release version, and lo and behold, it is on the market as Fampyra (sounds like a horror movie).
The druggist at the Ottawa General hospital made the 4-AP. Any druggist could make a time-release version of it. Why does anyone have to pay so much $ for it? Why is there not a generic?
OK, so mabs are tricky to make. But there have been Chinese people taking the herbal version of Gilenya for thousands of years. Why do "MS" people have to pay $30000 a year for it?
These are the first so-called Disease Modifying Drugs that help sufferers a significant amount, and actually do postpone disability. People have been dying of "MS" for 150+ years. Isn't it time they were given a break, and allowed to pursue the best course of treatment they can find, without interference from lobbyists, politicians, medical gatekeepers and everyone else protecting their slice of the $20 billion "MS" pie?
I did my research even before the trial started, and had a well-founded, reasoned, evidence-based belief that Gilenya would work. I probably knew more about it than the doctors running the trial. I was prevented from taking it. It was only after that
, about a year later, that I really became disabled. Yet only RR"MS" patients were allowed on the trial, and since I was misdiagnosed (too soon) as having "converted" to SP"MS", I was not allowed on the trial, and did end up disabled. Now that the trial is over, I am not allowed, because it is only for "RRMS". Nobody can tell you why, because it was never even tested on SP"MS"
But the drug company (and neurologists) had a happy ending, because there are always more guinea pigs and "MS" patients that they can sell their drugs to.
Since then, I have been on a 2 year trial of a drug that didn't work. I saw people crying because either the drug didn't work or they were on placebo. I was on placebo, but the real drug didn't work. I didn't cry because I was used to it. Incidentally during that trial I was given steroids for an "exacerbation". I had thought people with SP"MS" didn't have exacerbations. Oh, well, what do I know? I am just the idiot patient.
About 4 years earlier, I had had a course of mitoxantrone. It has the lovely side-effect of causing permanent heart-damage, and delayed heart-attacks (about 4 years later). I had one of those, and I would hate to think they ended the MBP8270 trial early because of that. I was only on placebo, so I doubt it.
Now I am nearing the end of a two-year+ remission (which again, SP"MS" patients are not supposed to get), due to the CCSVI procedure. Am I still "RRMS"? Should I be on Betaseron? Tysabri? Gilenya? Fampyra? No, not worth spending any more money on me. I have a heart condition. Won't live long enough, not likely to improve my quality of life for a significant time. Isn't there some other life-threatening experiment we can try? How about high-dose chemo?
Just to round out my rant, there were studies done on the combination of mitoxantrone and Copaxone. My chemo doctor (also an"MS" doctor) told me there was no reason not to stay on Copaxone while taking mitoxanrone. But when I went to fill the Copaxone prescription, I found my neurologist had cancelled it, saying that the combination was "not approved". Never mind that studies came out within a very short time of that, showing synergy, and that the combination was better than either drug alone. I was already off Copaxone.
I blame many of my problems on the incompetence, inattention, and carelessness of certain doctors. I have come to the conclusion that in spite of Hippocrates, and statements to the contrary, you are on your own. The only remedial fact is, doctors get sick sometimes too. "Physician, heal thyself."
Your mileage may vary, but it is
too bad you were not adjusted earlier on, yes.