Does anyone out there have experience of developing ‘on’ dystonia and having their medication changed to deal with it? Did it work? And if so what worked and how long did it take to work?
This is my story:
Two weeks ago my specialist told me that I have developed ‘on’ dystonia, which is incredibly uncomfortable and at certain times of the day 1-3 hours after a dose of Sinemet makes it difficult to walk, stand or do exercise. Initially after diagnosis nearly two years ago I was prescribed 3 x Sinemet Plus 25/100 per day, which was later supplemented by 1 x 50mg Safinamide. The medication worked well, but in January this year my specialist doubled the dose of Safinamide to 100mg per day. About 6 weeks after the change of dose, the ‘on’ dystonia began gradually at first and became so bad that I had to bring forward my next appointment with my specialist.
Hence two weeks ago he told me to taper down and eliminate the Safinamide, the logic being that if the medication worked and there was no dystonia before the increase of the dose, the right thing to do would be to reverse the dose or even eliminate it. However, two weeks after reducing then eliminating the dose of Safinamide, I am in the worst of both worlds: I still have the dystonia, but I have lost the beneficial effects of that medication. So is two weeks to short a time to expect any reduction/elimination/change of medication or dose to have any effect?
Any suggestions gratefully received,