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P. Schark wrote: > > Laurance, > > I've written about pramipexole before, but will try to expand a little > for you. > > I've been part of the research trial of pp at Washington University in > St. Louis for three years. The first year was a double blind study, and > I did very well on a supposedly high level of the medication. The second > year I definitely received pramipexole, but didn't do quite as well > because I had to take a lower dosage due to chest pains which, as it > turned out, were unrelated to the medication. > > During the third year I accidentally took a bit more medication for a > week and felt so much better I prevailed upon the drug company to > increase the dosage slightly. This brought about a short term > improvement, but after a while I didn't notice any difference. I still > have too many "off" times, alternating with dyskinesia. > > This is what bothers me about the study. Every three months I go for a > checkup. I'm asked very specific questions and given the same performance > tests, plus blood and urine tests and an ekg. When I volunteer > information about some of the problems I'm having, they're ignored and > never addressed. For example, others have noted the problem of extreme > drowsiness, especially while driving. This occurs usually about a half > hour after taking the dose of sinemet CR which was preceded by the > pramipexole. My doctor's solution was for me to stop driving, but I'm > not ready to give that up yet. Since pramipexole is a helper drug, it > doesn't work when the sinemet isn't working. Several years ago, > MaryHelen Davila remarked that pramipexole seemed to become less > effective over time, and I would agree with that. > > That is not to say it isn't a useful drug. It seems to be more specific > than parlodel or permax, which have more of a shotgun effect; this drug > targets particular receptors. However, it's not a wonder drug and not > without side effects. Other substances, such as NADH, seem more > promising; however, no one here seems to be doing anything about it, > probably because it's not profitable enough. > > A member of our support group contends that a cure ism't being found for > pd because the drug industry won't allow it. Medications are too > profitable. I know since I switched from sinemet 10/100's to the Cr's, > my bill for a month's supply has gone from $39 to $247. That's a > phenomenal increase. It seems to me that everyone sees dollar signs in > this drug and so they don't want to entertain any negative thoughts about > it. In the meantime, the problems I have with it are ignored. > > I don't mean to sound negative, but am trying to give you a fair picture > of the drug as I see it. Hope the information helps. > > Pat Schark > > pine` Dear Pat, I am new to the PD forum. 66 years old, PD 5 years, diagnosed 4 years ago; I have a definite feeling that the research on PD is financed by drug co's and that there is no money (in Canada) for PD research for anything but drug acceptance process. If they can't patent it, they are not interested. That includes NADH, Melatonin etc. Guy