Has anyone had experience of the new drug Produodopa please
Yes, i have some experience.
I have asked to be considered for this and was told it will be years before it gets to my town, The hospital has to apply for it and invest in the training of specialist nurses, I can’t even get on a waiting list. Sounds like another postcode lottery. Hopes dashed
I started it monday gone , early days - 5 th!
But so far so good
I have two very proactive pd nurses- its funded differently, not out of hospital or gps budget
You need to ask
Do not wait to be asked x
Its how i got this and how i got myself on gdnf trial x
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Is it working fot you.
I received Produodopa, but I don’t feel well.
David, how is the pump working for you? What is your current base level for the mediation? Thank you so much for your help.
Sim good day, I wanted to see if you have been able to adjust to the pump yet. My dad started with the pump 2 weeks ago but is not seeing much improvement we wanted to see how others are doing. Any help you can provide would be great. Thank you
I’ve had it 5 weeks and can now change rates as well as boost, restricted to every 4 hours. I lower the rate at night. We’re still in the process of tweaking the dosage but, even with “off” periods it’s an improvement on the tablets. I’m mobile for longer and more active than before.
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I had appt at Southmead brain clinic on 27 th Jan have been added to waitlist for pro duodopa but consultant says a 100 on waitlist and it will be a year to wait.
A year with a progressive neurological condition taking 20 pills a day having more off time than on!!! We need it now not in a years time when we will be so much worse.
I was diagnosed 15 years ago. I am 74.It has recently been suggested to me to try the new Produodopa pump. Has anyone got any experiences to share please? Is it easy to manage at home with my wife’s help?
I have been on produodoper for over a week and you have to learn how to use it You need to use the low doses first. Dont jump in on a high dose dose.When it works its a life changer. All those tablsts go in the bin
Hi can you tell me if you suffered dyskenesia after having the pump my husband has it only 4 days now has had doses turned down but finds it hard to sleep with movements
Firstly, welcome to the forum, @M4.
I’m sorry you and your husband are going through this. It’s common for movements like dyskinesia to appear or change when starting a pump or adjusting doses, and it can definitely make sleep tricky. We have a helpful page with information on dyskinesia and wearing-off, which might give you some tips on managing these movements here.
It’s also worth keeping your neurologist or Parkinson’s nurse updated on how he’s coping, as small adjustments can sometimes make a big difference.
You can also call our free, confidential helpline for support and advice: 0808 800 0303. Our trained experts and specialist nurses are on hand anytime between 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays.
Take care 
Parkinson’s UK Moderation Team
I had produadopa for just one week. Having had problems with the apomorphine pump not hitting my symptoms I had already spent the previous 4 months barely switched on.
The Produadopa seemed to be working intitially although I did have very painful dyskinesia during the first night.
To cut a long story short, once i got home I found that the treament was hit and miss. The fluctuations were unmanageable and far more intense than anything I had experienced previously. I was in agony and unavble to control the crippling dystonia in my legs and generally feeling lousy. I also had problems with the needles. The second one was painful to insert and left me with a burning feeling and a bright red tummy. The general consensus was that the liquid was pooling under my skin. This happened on two further occasions and was rather uncomfortable and makes me wonder what it is doing to my skin. The other issue was that the medical team werent sure that the liquid was hitting the right spot. Some days I have tried 3 needleds before getting it right. Apparently scar tissue from pregnancy can cause problems with siting the needles.
It seems to me that this is a good product but hasnt been thought through. Why is the pump so large? The apo pump is much more manageable and performs basically the same function. I developed a real resentment to the “brick” that I had to carry around with me. It is also a nuisance during the night time. I am a vivid dreamer and frequently act out my dreams - not ideal if you have a tube connected.
All in all it is very early days and a very steep learning curve for the nursing staff and consultants bravely trying to treat as many patients as possible. But there is no statistical data available on how many continue with the treatment and how many give up like I have.
I am now back into my tedious regime of medication but at least I am feeling much better and dont have to carry a brick around with me.
I very much hope that patient feedback is being gathered and summarised as the first step in improving Produadopa. I m guessing that the primitive nature of the delivery system in this age of minimalist technology is cost driven but it would be a shame if ProD is found to be inpractical rather than ineffective.
Hi yes I’ve had the pump 7 months now
A friend is 82 years old and in the USA. Would anyone know a private treatment centre in London I can speak to for advice?
Hi, @AshK. Firstly, a warm welcome to the forum!
For someone coming from abroad, I’d recommend contacting specialist Parkinson’s centres in the UK directly. You might find our Find Support page useful - it lists clinics and specialist centres across the country.
You can also get in touch with our helpline on 0808 800 0303 (9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays). Our trained advisers would be happy to talk through options, including private centres, and help point you in the right direction.
I hope this is helpful!
Parkinson’s UK Moderation Team
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Thank you so much
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