Quote:
Originally Posted by Issi 8
Hi everyone, I have just joined this forum, I live in New Zealand and have some questions I hope you can help me with. I have been diagnosed now for 10 years and back then, the neurologist told me I would be disabled in 10 years, well I am not, and I lead a normal life. I am on drugs of course, ropinerole 4mg x 3 times a day, sinemet 100mg/25 x 3 times a day and entacapone 200mg x 3 times a day, reasonably low doses. Have been on sinemet for 6 years. I am thinking now I could be misdiagnosed? or have a mild case of PD? At my last visit to my neurologist, I asked him about coming off my drugs and he thought I could try if I wanted to. But, I need more information and support to do this!!
So, I would like to know if there is anyone out there who has come off all their PD drugs and how they did it. Has anyone else got a mild case of PD? or does anyone think they have been misdiagnosed??
It is actually quite scary, the thought of coming of drugs I seem to have been relying on for years. But, do I come off them or stay on them???
Any help or suggestions on this would be great, thank you.
Janette
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Hi Janette,
Yes after I had DBS I stopped Sinemet completely for the first yr or so by titrating it down slowly when previously my daily dosage was 1,200 mg/ day.
I did stop the agonist abruptly (new neuro recommended cessation plus I was hospitalised at that time) and I don't recall any problem associated with the cessation of it.
I'd say asking your neuro and if he thinks going down maybe from 3 to 2 per day is worth a try for a week then 2 to 1 then 1 to none?
There isn't a clear way of getting a diagnosis of PD yet.
The closest to it is a Sinemet challenge test where if you respond positively to a small dose of it then most likely you do have PD.
I'd be interested to know your outcome.
I know a lady who lives near me and was supposedly young onset and diagnosed wrongly with PD and took Sinemet for approx. 10 yrs before stopping it.
The fact that you feel there's been little if any progression is good either way!
Best wishes.