Has anyone in the UK got one of the external ones yet, or are they not yet approved/available here? I have been on oral Madopar for 10 years and its just not effective anymore. (5 a day + a CR one at night).
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Hi Garry270, Is this what you mean? NHS England » NHS rolls out âwearableâ 24-hour infusion for advanced Parkinsonâs I notice it says from Feb 2024 for 1000 patients? Not sure if anything else has happened with it or if more people are now on it. May I ask what dosage of Madopar you are on and has someone suggested a pump might be the better option? My husband is on Madopar too and it seems to be ineffective so am trying to see if he can increase his dose, but also preparing for what else might be next.
Best wishes
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Hi, I take 5 pills a day at 100/25Mg and an extra slow release one at night. The night time one wears off by 4am leaving me âtrappedâ in bed. The daytime doses take 40 minutes to kick in and last maybe an hour, possibly due to me having a high metabolism. I canât drive anymore so hardly leave the house and have pretty much zero quality of life (I live in an isolated rural village in Lincolnshire). My PD nurse suggested a pump would possibly be a better option at this stage but I canât even get them to give me the patches which would supposedly give a steadier release of the drugs over the course of the day.
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So sorry you to hear that you are having such a hard time - I hope you can push them to help you more with the patches or pump soon - do you have a consultant who you can get in touch with instead?
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Hello @Garry270, thank you for your post. Weâre sorry to hear that finding the correct dosage for your medication is difficult at the moment, and this is impacting your quality of life. We understand this must be really hard. Weâre glad you have a Parkinsonâs nurse who has been able to provide support and share what could help. If your current medication is not working for you, please reach out to your GP or specialist. Weâre also here to help if youâd like to discuss this further or need help accessing medication. You can call our helpline where our trained advisers and Parkinsonâs nurses can offer support and advice: 0808 800 0303.
We also have information about Levodopa, the benefits, side effects and its different types on our website, which you might find helpful: Levodopa (co-beneldopa and co-careldopa) | Parkinson's UK
Take care 
Parkinsonâs UK Moderation Team
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My GP wonât/canât get involved with anything Parkinsonâs medication related. I am under a consultant but only get seen once every 12-18 months and never had any luck trying to contact her outside of these yearly âcheck-upsâ. I seem to be in on of those bad postcode areas as far as treatment goes.
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Hello @Garry270 They are available in the UK but still rolling out, so access varies by clinic. Your specialist can tell you if your area offers it yet.
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Hi Iâve been on a produodopa pump for a week & I wonât lie itâs hard work getting used to wearing it. Youâre attached to a house brick 24/7 which makes dressing a nightmare. As for wearing it I hope I can get used to it hanging round my neck or/and strapped around my waist, I prefer it on my own belt attached to my trouser belt loops. The set up is very hard to understand and fiddly as you get a lot of books which can be hard to understand as they go through each step in detail. I was shown how to go through the procedures but I couldnât take it all in I must admit. The syringe has to be replaced every 24 hours & the cannula every 2 days. Every work surface has to be clean and practically sterile & there are a few fiddly bits to put in the cannula. Itâs supposed to take up to two months to get in your system, Iâve only been on it just over a week so we shall see if it changes my life.
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Good morning. Thank you for sharing your experience. Starting Produodopa is a big adjustment for many people, and itâs completely understandable that the practical side feels overwhelming at first.
Itâs still early days, and as you say, it can take a couple of months for things to settle and for you to really feel the benefits. In the meantime, please donât hesitate to ask questions here - there are people using Produodopa and other pumps who can share tips that made the day-to-day side easier for them.
If you ever want to talk things through with a specialist, our helpline is also here for you on 0808 800 0303.
Take things one step at a time - youâre doing brilliantly in a very steep learning phase, and weâre here for you!
Parkinsonâs UK Moderation Team
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Thanks for the support & kind advice 
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