Young onset Parkinson’s and Madopar

Hello I’m looking for advice on medication.
I’ve been diagnosed at 40yrs old approx 18 months ago and was started on rasigiline at the time of diagnosis - my consultant is now wanting to introduce Madopar 62.5mg x 3 daily. ? Why.
Can anyone give any advice on their experience with Madopar ? Good or bad ? I’m nervous re starting levodopa at a ‘young’ age as have heard it only works for five yrs ? Any advice please

Hi @Madwife5676

I am sure you will get many responses to your question, however in the meantime have a look at the following on our website https://www.parkinsons.org.uk/information-and-support/young-onset-parkinsons and https://www.parkinsons.org.uk/information-and-support/parkinsons_drugs.

In addition you can also contact our helpline who can put you in touch with a specialist nurse if approprate, on 0808 800 0303.

I hope this helps.

Regards

Sue - Forum moderation team

Hi. Answering your first question, I can only presume that your consultant thinks that your condition has progressed and you now need the Madopar, because the Rasigiline is not sufficient. He has started you on a low dose. But, I think your discussion about why he wants to prescribe Madopar should really be with your consultant.

I’m 67 and I have been on Madopar for nearly 3 years. It still works, but in the last year I have started getting ‘wearing off’ i.e. the dose of Madopar is no effective for the whole 3 hours before the next and so I go up and down during the day. I was prescribed another drug - pipexus to deal with it, which is working well for me.

From your point of view, I’m probably not a good example, since Madopar has become problematic for me within 5 years, but I know people with early onset who have been on Madopar without problems for a decade or more.

Thank you Jane for your honest reply. Decades sounds great but I know I’d be lucky if so … I need to carry on working for as long as I can so trying to gather as much information re side effects and effectiveness in particular with YOPD as I can

I mostly meet other PDPs at the exercise classes I go to. There are several who had early onset who are now my age or older, but whose symptoms are no worse than mine, or even better. I’m actually quite jealous of some of them! I wish I could slow down the progression of my illness to their pace.

I suggest you consider going on the Fighting Fit course: https://fighting-fit.org.uk/home/

Hi snap i found out i had Parkinson’s at 40, that was in 2004. I went on Rasigiline and still on it. About Madopar yes i may have been on it but it didn’t work, you may have to try a few different drugs at first to get one to suit you, or you maybe luck and the first one works. Good luck.
Bye Zo

Thanks for the replies everyone, I’m still unsure what I’m going to do but think I may postpone further meds at present as not really effecting daily life … when it gets cold i may change my mind ! Has anyone taken any supplements … I’ve heard a bit about coq10? How long were you able to work following diagnosis ? X