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

Interesting reading. My Consultant has decided to start me on Madopar. Unfortunately my surgery can’t get their brain into gear and write the prescription. Been waiting two weeks for it. Spoke to a PD nurse the other day and she said if not done by this Thursday give her a ring. Fingers crossed.

Hi
My hubby has been on madopar 250mg 2 tablets 4x a day for 4 years. His old neuro told us the 5 year line, His new specialist has said he can have this upto 6 times a day, but hubby can’t tolerate it at this level. He has since been given pramipxole to increase the efficiency of madopa. He too had yopd but his new specialist has told us there are med sthat can be given to increase the efficiency of madopar.

Husband was diagnosed a few weeks ago at 43 and has just started madopar. One tablet per day for 2 weeks then increasing to 2 for another 2 weeks then 3 tablets per day. Was initially told he didn’t need meds but another consultant who specialises in yopd who we haven’t even met has decided it would be beneficial to take. Didn’t know about the 5 year theory. He has no PD nurse as yet and trying to get a hold of the consultant is a nightmare!!! Feeling very frustrated over the whole thing. Would just love to have a sit down with the nurse or consultant so we can ask the 101 questions we have. I know his symptoms have gotten mildly worse over the past few months but we were still hoping that the medication was a long way off. Will, just have to roll with it and see what happens. Love Shona x

Hi shonda.
Hubby’s new neuro has also started him on pramipxole after the madopar wore off. Neuro said that madopar can be taken at 500mg upto 6x a day and with additional meds it can last longer than 5 years.
Tip 1 fight fight fight fir that PD nurse _ they are amazing
Tip 2 check out the contraindications for any meds given by hubby’s doc on NICE, drugs.com and the BNF
Tip 3 look after yourself- should be 1 but get
Tip 4 make time for yourself

Thanks for the reply. We now have a PD nurse. Hubby rang the local, hospital himself and left a message. She got back to us a day later and we had an appointment the next week. She was lovely and answered all our questions along with so much more information. Thankfully the madopar seems to be working as hubby has noticed his leg isn’t giving him as much trouble and as he describes it his head dosent feel so strange. The tremor even seems to have improved slightly. She will review him in 6 months again. We both feel so much better knowing that there is someone we can ring if we need to. X

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