Just wondering if anyone had any experiences of starting the new Produodopa infusion switching from the apomorphine pump?
My mum is a week into the switch and it seems to be a backward step. On periods are good but she only seems to get a brief one in the morning. She spends the rest of the day unable to move, which is much worse than she was on the apomorphine.
The medical professionals don’t seem to know much about whether we just need to give it more time etc or to go back. any advice out there?
Thank you for sharing your mum’s experience—it sounds really tough for you both. Switching to a new treatment like Produodopa infusion can sometimes feel like a setback initially, as the body adjusts to the medication and how it’s delivered.
It’s not uncommon for people starting Produodopa to experience fluctuations in symptom control early on, and it can sometimes take a few weeks for dosing and settings to be finely tuned to achieve the best results. Your medical team should ideally be closely monitoring this and adjusting the infusion rates or supplementing with other medications if needed.
Since you’re noticing that her “on” periods are brief and she’s spending much time immobile, it’s important to keep a detailed symptom diary including times when she feels better or worse, and any side effects. This information is very useful for the specialists to tailor her treatment.
If the healthcare professionals you’re currently working with aren’t able to provide detailed answers, ask if a Parkinson’s specialist nurse or movement disorder consultant input is possible—they often have more experience with these advanced therapies.
It’s understandable to feel uncertain and frustrated, but changes can take time. If things don’t improve or worsen after a few more weeks, or if you feel her quality of life is significantly reduced, don’t hesitate to seek a second opinion or revisit the option of the apomorphine pump.
Other members on the forum with similar experiences may also be able to share insights and support. You’re definitely not alone in navigating these challenging treatment changes.
I went on to produodopa following four months on the apo pump. I have experienced exactly the same as your Mum. I found that I was fine in the morning but got much worse by the afternoon when I was completely immobile. .My dosage was tweaked several times but to no avail.
I also had problems with the needles causing pooling of the liquid under my skin which really burnt… I gave up and am now back on my old drug regime which will be reviewed next week. Having spent months on the apo pump with what I now believe were withdrawal symptoms from the reduction in Pramipexole, and feeling rough for much of the time I was not prepared to put myself or my family through further stress.
Having said all of that, I have friends who swear by it and report that it changed their lives despite struggling at the beginning mainly with skin infections. They have said that it is worth persevering.
Personally I found the setting up of the pump every day a real chore and carrying round a bulky, heavy pump very uncomfortable and restrictive.
It has to be remembered that this is a very new treatment so the clinicians have no experience or feedback to draw on. They are trying to learn as they go along,. Its a question of whether the teething problems are simply that or whether there is a fundamental flaw in the treatment. Only time will tell which doesnt help you or your Mum now.
Good luck with the treatment hope it soon settles down.
With dopamine too much CAN BE AS BAD as too little. One tip I read from an American reader and a pump system user was to half the normal daytime pump dose at night because the body uses around half the level of dopamine when you are asleep???