Hi all, this is my first post here. My 91 year old mum has had Parkinson’s about 6 or 7 years but so far it has progressed very slowly with a slight tremor in 2 fingers and some walking difficulties. She has been taking co-beneldopa 4 tablets per day (sorry not sure how many mg) for several years. She lives independently at home.
Recently she had a lot more difficulty walking, she just couldn’t get her legs to move and was prescribed ropinirole. This had an amazing effect on her walking, a really incredible improvement, but she has also had awful hallucinations at night, to the extent that she has now stopped taking the new medication and her walking has really deteriorated again, within just a few days of stopping.
My question is - is it worth her trying out other drugs and is it likely she would find one that had the same miraculous effect on her legs but without the side effects - I don’t know much about the different drug categories but presumably one from the same group the ‘dopamine agonists’ would be the best to try first?
We’ll try and phone her nurse again next week - trouble is I also live 85 miles away so not on hand easily to help her out.
Thank you.
Hi LizaJane1, sorry to hear your mother is not tolerating the Ropinerole. My husband was on this drug for a few years, gradually increasing his dosage to 8mgs daily. He was tapered off it a couple of months ago as he’d begun to develop cognitive issues and hallucinations. The consultant thought the Ropinerole was to blame. He is waiting to see the PD nurse on Tuesday to see if she can add another dopamine agonist to replace the Ropinerole. The reason for this is his tremor has become much worse since stopping Ropinerole. However, this drug also seemed to make him excessively tired most of the day too. I’ve noticed he’s not as sleepy but he’s definitely feeling the lack of an agonist as he’s now also experiencing freezing and the Sinemet (his other PD med) doesn’t seem to be lasting as long between doses. It does sometimes seem with Parkinson’s, the drugs help with one symptom but then the side effects can outweigh the benefits. It’s such a minefield which I’m sure causes most people with PD and their carers a great deal of stress and worry. Getting just the right ‘cocktail’ of meds often seems more luck than judgment. Wishing your mother all the best and hope her PD nurse can get her back on track. Best wishes, Jean
Welcome Jean 1 I started on Ropinerole 13 years ago first a small dose until now i have 12mgs a day also with Madapar, Each time I see my nurse she will adjust my meds. I think a lot of it is trial and error but everyone is different this is why we need our nurses, If you look at PD uk web site they have lot of books and leaflets giving out information, there is a book that you can get from them andbit tells you all about Parkison’s Medication, and which drugs work well with each other, Keep posting as this subject is very interesting, Let us know how husband is going on.