Hi all,
Just wondered how many of you have problems with your medication? My OH has been on Sinemet plus and sinemet CR and Mirepexin since he was diagnosed. trouble is over the past few months he's been having nothing but problems!
He is constantly overdosing on the sinemet because he's getting about an hour from each dose...it's ridiculous. Ive tried changing the combinations but nothing seems to work.
His normal day was basically an as and when but he'd have 2 plus and one CR plus the controlled release Mirapexin as the first dose then for the rest of the day 2 plus one CR but he was taking at least 5-6 doses a day! Ive tried to get him to cut back but as soon as he reduces the amount he takes he gets a day like today where he's been offline for 12 hours or more. I think it isnt helped by the fact that he can't sleep so he's up all night only getting 2 hours sleep, of course if he's awake he takes more tablets!
I feel like he's in a vicious circle because he needs to take less sinemet but then he's offline for most of the time....when he's online he's only getting an 1 hour or so or sometimes they just go awol altogether...any ideas as to what we can try?? I'm contemplating seeing if the doc would try him on Stilevo instead as the sinemet just don't seem to cut it anymore...and the side effect aren't all that great either!
Thank you in advance xx
hi Beth
just saying hello, this is a bit out of my league but hopefully someone else will be able to offer useful advice. The only option i can think of is DBS - has that been considered?
best wishes
t
just saying hello, this is a bit out of my league but hopefully someone else will be able to offer useful advice. The only option i can think of is DBS - has that been considered?
best wishes
t
on the other hand would an MOAB inhibitor make the dopamine last longer - just a thought!
Hello Beth,
This is a simular problem to one my husband had many years ago, you need to talk to your pd nurse or consultant as he needs to have the days smoothed out. I would make a diary of the next week or so recording the off's and on's and the times also meal times as this can sometime block the medication working. I don't know if you belong to a branch but they have a fact sheet on which you can record it all then you can take it with you when you go. Apart from the different tablets available ther is also the apo pump which worked very well for my husband for almost fifteen years. By the way you may find the diary fact sheet on the web it should be there to down load.
Good luck but please get int touch with he nurse or doctor.
best wishes
vivian
This is a simular problem to one my husband had many years ago, you need to talk to your pd nurse or consultant as he needs to have the days smoothed out. I would make a diary of the next week or so recording the off's and on's and the times also meal times as this can sometime block the medication working. I don't know if you belong to a branch but they have a fact sheet on which you can record it all then you can take it with you when you go. Apart from the different tablets available ther is also the apo pump which worked very well for my husband for almost fifteen years. By the way you may find the diary fact sheet on the web it should be there to down load.
Good luck but please get int touch with he nurse or doctor.
best wishes
vivian
Thanks for your help.... so fed up with this today! Frustration is not the word 
After almost ten years of this you'd think you would get to be a dab hand at managing and knowing when to take tablets so you don't crash but at the minute each dose is totally different from the last so it's like playing Russian roulette!
Is anyone here on Stilevo? I'd be interested to get your opinion on it, especially if you are a previous Sinemet taker.
Many thanks again x
After almost ten years of this you'd think you would get to be a dab hand at managing and knowing when to take tablets so you don't crash but at the minute each dose is totally different from the last so it's like playing Russian roulette!Is anyone here on Stilevo? I'd be interested to get your opinion on it, especially if you are a previous Sinemet taker.
Many thanks again x