 |
 |
Dear Listmembers Following is my off-list response to David H's query about other'e experience with Mirapex, which he suggested I post to the list. I too have been surprised by the adverse reactions reported by people starting pramipexole/Mirapex because they are in stark contrast to my own experience. This may have something to do with my stage of progression (early) and/or the fact others are taking a lot of other drugs (pramipexole is the only PD medication I take). > >I was diagnosed 3.5 years ago at age 57, having been referred to a Movement Disorder Clinic by my family doctor when I complained of cramped handwriting. At that time I also had (unrecognized) reduced arm swing, leg cramps, and overwhelming fatigue -it was only later I realized the latter two were related to PD. I was taken into a double-blind, placebo-controlled, 3-month study, then after a few weeks interval entered a three-year, open-label trial. I had the final visit for the three-year trial last week. In both trials there was a 6 week ramp-up stage to maximum dosage. > >I responded so positively and so immediately to the medication in the double-blind trial that I was astounded to eventually learn I had been on the placebo. I knew something of clinical trials and scientific research, am level-headed, and had no expectation of benefits. I had no adverse affects at all and in comparison to the beneficial effects from the open label study thought I was getting about 1/4 dose. This experience has left be quite sceptical about self-assessment or uncontrolled assessments - the doctor also was convinced I was *not* in the placebo group. > >Initially, as the dosage increased up to 4.5 mg per day in the three-year trial, I had some temporary queasiness (not bad enough to call nausea). For the first couple of years I had some postural hypotension, easily managed by increasing intake of salt and drinking more in summer. I feel energetic and sleep well but require 1 - 1.5 hours less per day than I used to. I have had some concern about feeling sleepy when driving into the sun -- but that also seems less severe than last year. After 3 years on the trial my functional scores are essentially the same as when I started. The only deterioriation I have observed is in handwriting, which is just about impossible under pressure. I am generally a bit slower - but I am also three years older. I work full time and look after a house and property without help. I have almost no evident symptoms on weekends but do have some tremour when under stress at work. There has been no change in my emotional outlook except perhaps to try to reduce stress by taking things a little less seriously. > >Like my siblings, I have some arthritis in my hips and back. Over the past several months I had got a rather stiff back, which responded well to an anti-inflammatory. It is easy to imagine that every symptom is due either to PD or to medication - and sometimes it is not. I wonder if some of the adverse reactions reported were not just coincidence. > >I can't compare pramipexole to anything else, nor know what might happen if I were taking other medications, or if the PD were more advanced. Given other people's plight, I feel almost guilty that in my case, as monotherapy at an early stage, pramipexole has been very beneficial and has had no adverse effects. > >I hope this is useful. I would have liked to respond sooner but my life is quite busy at the moment. Good luck! > >Margaret > >