I was diagnosed in April 2016 (I'm now 59). My symptoms were not too bad at that time. My consultant suggested the following medication: Rotigotine, Rasagiline and Sinemet. Given the potential serious side effects from these drugs and the fact that they wear off and you have to take more and more, I decided not to take medication at that time - I wanted to wait until things got really bad. Things have worsened since then and my consultant (a locum) has moved on. My new consultant, who I saw today, said she wouldn't have prescribed any of these meds and instead suggested I go on Ropinirole. This suggests that maybe I was right to resist medication as otherwise, I'd potentially be taking the wrong medication or perhaps more medication than I need. I still don't want to take medication, but I'm in the process of making a claim for PIP and I wondered whether not taking medication (for the reasons set out above) would be held against me? Any views would be welcome.
Hi SJ,
I was diagnosed around the same time as you. I'm 51. I'm really surprised at the amount of meds you were advised to take. I think you were right to wait. I started on the lowest dose of Ropinerol in oct. I'm not planning on increasing that for a while and my consultant is reluctant to throw meds at me willy nilly.
I haven't claimed for pip as of yet so I can't help you there but I'm sure someone will have good advice on here.
I wish you well.
Hi SJ - I had symptoms in 2010 finally diagnosed in early 2011, declined any meds for 12 months until I felt I needed to take some - I chose Ropinirole - it is not a medication anyone can take without side effects, but some can without any side effects at all, hope you were told about the risks. My meds are Ropinirole XL slow release, been on them since 2012 when I felt the need to take medication, still on them (18mg now) also now on Sinimet which was added two month ago. Applied for PIP in 2013 and was refused,then re-applied in 2014 and accepted.
Thank you DivineR and Sheila for your responses - they are very helpful. After looking at my tremor my consultant said I should not drive, which was a real blow, and that taking Ropinirole might help reduce the tremor. However, I read a number of posts on this site about the awful side effects which is putting me off.
Yes the side effects are slightly alarming which is why I'm hoping not to increase them too soon. Reading Sheila posts, she seems to be getting on well with it. That gives me hope. I'm sorry to hear about the car. I'm waiting for my 3 year licence to arrive. I was nervous about filling in the form. I'm lucky I don't have a visible tremor(yet). Everyone has different symptoms at different stages. It's so confusing sometimes.
Thank you DivineR - last year I got a one year licence. I suspect it'll be revoked this year. In any event, I have stopped driving - my worst fear is not being able to walk one day.
Hi SJ,
I know it's hard not to think of what maybe, especially at night when your lying awake. But I try not to think too far ahead and take every day as if comes. Easier said than done but to be honest I would take to my bed if I thought too much. There's plenty of living to do but just in a different way.
