Totally bamboozled with PD drug treatment!


#1

I am 58 and was diagnosed 5 years ago. Suffering now with a tremor down my right side, more dominant when stressed or tired, but still enjoying a very active life with yoga and pilates forming part of my weekly fitness regime. Up until 2 months ago was totally drug free. I then started taking selegiline 10mg which made very little difference, so now weaning myself slowly off this. Maybe I didn’t give it enough time ? Last week my neurologist suggested starting on Levadopa and initially I was up for this. Having now read various articles there appears to be worries about long term effects after 3-5 years, which would be in my mid 60s. Not ideal! I then suggested that maybe I start with Mirapexin, so awaiting a prescription for this. I would love to hear from anyone who has experienced a similar situation and would appreciate any advice. My gut feel is to continue on the path of being drug free as long as possible.


#2

Hi @Nici, I can’t really offer any advice, I’m afraid, because I’m in a similar position. I am 61 and was diagnosed 3 years ago and was immediately prescribed rasagiline, which I think is a MAO-B inhibitor like selegiline. I do think it has made thing more predictable - my tremors are less variable - and my sense of smell and anxiety levels have also improved.

The tremors are now getting more problematic now along with some discomfort with walking and difficulty in left hand dexterity so I’m considering asking my neurologist whether it would be worth adding something else but am also worried about side-effects and possibly long term problems so would love to hear other people’s experiences.

Clare


#3

Nici that is very worrying. I was prescribed sinemet right from the start, 14 months ago, when I moved it changed to Levadopa as apparently sinemet is too expensive in Maldon.
I know there can be side effects but i didnt know it was only 2 to 3 years before they started. I didnt realise there was a choice of medication.
The only thing I have read was that any medication for Parkinsons stops being effective as time goes by and you have to take more and more medication.
Would love to hear other peoples take on this.
Thanks.


#4

My husband was recently diagnosed at the age of 42. Maybe its his age, but the Neurologist said the most important thing was to get straight on the medication…and ensuring its the right medication because he has often seen cases where Doctors haven’t prescribed the correct medication and it has set patients back years.
I was under the same impression as the lady above in that the medication becomes less effective as symptoms step up so more meds have to be taken (and am assuming thats when DBS is suggested?)


#5

In the latest PUK research magazine, “Progress” there is an item in the News Roundup section which says that a recent clinical trial has produced further evidence that there is no benefit in delaying levodopa therapy. It wasn’t a very long trial though - only 80 weeks.


#6

It’s all so very confusing with many conflicting messages. I’m going to start with a beta blocker for my tremor to see if that makes a difference. Very interesting to hear that you were prescribed rasagiline. My doctor can’t prescribe this in my area, so I started on selegiline although I’d have preferred rasagiline. I noticed very little improvement. Staying positive and active are what keep me going!