Question regarding appropriate therapy for my 58yo mom (YOPD) – Madopar, Requip, and Agilas

About Parkinson's and health Treatments and therapies
1

Hi everyone,

My mom (58 years old) was diagnosed with Parkinson’s disease about 1 year ago. Before starting the medication (before 1.5 month ago), her main symptoms were a tremor and cramping (rigidity) in her left hand. Occasionally, it would also slightly affect her left leg. Despite this, she was still able to function normally in her daily life.

However, the neurologist started her straight away on a strong triple therapy combination:

  • Madopar 125 mg (3 times a day)

  • Requip Modutab 4 mg (2 times a day = 8 mg total)

  • Agilas 1 mg (once a day)

Since she falls into the Young-Onset Parkinson’s Disease (YOPD) category, we are a bit concerned about this initial regimen.

The good news is that she is feeling significantly better now and currently has no side effects. However, because she is relatively young and her initial symptoms were manageable, we are terrified of the long-term effects of Levodopa. We are specifically scared of early dyskinesia and the fear that the medication will stop working after 4 to 5 years (wearing-off).

We were wondering if it would have been better to start with a lower dose of Levodopa (Madopar), or even postpone it, since she could function relatively well before.

I would highly appreciate your experiences and insights:

  1. Is starting with this triple combination standard practice for someone who is 58 with mild-to-moderate symptoms?

  2. Would it be wiser to ask the doctor to lower the Madopar dose for now, since we are afraid of the drug losing its efficacy later?

  3. For those with YOPD who started on a similar regimen, how long were you able to maintain good symptom control before dyskinesia or wearing-off became an issue?

  4. Does the addition of Requip and Agilas help “spare” Levodopa doses in the long run?

Thank you so much for your support and advice!

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Hi, @bosandher, and a very warm welcome to the forum. I’m glad you’ve found us, though I’m sorry to hear about your mum’s diagnosis.

It’s completely understandable to have lots of questions and worries about medication, especially when everything still feels quite new and you’re trying to think ahead about the long term.

Hopefully some of our members, including others with young onset Parkinson’s, will be able to share their own experiences with this. Everyone’s Parkinson’s is different, so treatment plans can vary a lot depending on symptoms, how they’re affecting day-to-day life, and how someone responds to medication.

It’s worth saying that if you’re concerned about your mum’s current medication plan, it’s really important to raise those questions with her Parkinson’s specialist or neurologist before making any changes. They’ll be best placed to explain why this combination was chosen.

You may also find our information about Parkinson’s medication helpful on this page.

And if you weren’t aware, we have a completely free and confidential helpline manned by trained experts and specialist nurses who you can reach out to for advice and support - 0808 800 0303. It’s open between 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays (closed on Sundays and bank holidays).

I’m glad you’re here, and hope you find the community supportive!

All the best :blue_heart:

Parkinson’s UK Moderation Team

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Hi, sorry to hear about your mums condition but great that she currently has no symptoms with medication.

I too am concerned with long term side effects of Levodopa, after diagnosis in February, I have started off on Madopar 125mg x3 per day however I’m about to change onto Sinemet instead (my left hand is still slow and shaky on Madopar). I’m age 41 so guessing i’ll be on Levodopa medicine for a long time.

What are other peoples experiences with Levodopa long term?

Thanks

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Thank you for your reply and for the welcome to the forum.

We have sought two medical opinions, and the main issue is that they differ. My mum was on Requip and Agilas for a long time, but her condition did not improve and was getting worse.

The second neurologist added Madopar and doubled the dose of Requip.

After that, my mum experienced a significant improvement. However, we are now concerned about the long-term side effects. When the condition worsens (which is inevitable with this disease), will the medication still be effective, and could dyskinesia occur at that point?

We have many questions in our minds, so all advice is very welcome.

Thank you again.

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We hope that someone else will also share their opinion.
Thank you for getting in touch.

1 Like
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Thank you for your reply @bosandher, we fully understand your concerns about your mum’s side-effects and hope you get some good advice from the community.

We’d reiterate our recommendation that you speak to your mum’s Parkinson’s nurse or neurologist as they will be best placed to offer advice and answer your questions, being specific about your mum’s condition.

Alternatively, you can call our free, confidential helpline on 0808 800 0303 and speak with one of our Parkinson’s nurses who will be more than happy to help.

Thank you.

Parkinson’s UK Moderation Team :blue_heart: