I have to thank my PD team for having this approved for me. Together with the nurse we are still searching for the right rate of infusion to tackle my simptoms.
So far I have less painful dystonia. Of course it is the challenge to adapt sleeping with the pump, to change the canula daily, to avoid the skin infection. In the last week my “on” time slightly improved.
Is there anyone who has the pump for more than a year willing to share their experience with the pump?
Can anyone tell my if any studies heve been done about the how Hydrazine affects the patients using Produodopa continuous infusion?
I had the apomorphine pump once and worst 12 months ever it made me feel like I had the worst hangover ever everyday and when I kept telling them they just kept putting it up I thought I was going to have a breakdown, I. The end I told them in coming off it and wouldn’t take no for an answer, either in a day the feeling was gone. Di I’m reluctant to try this new pump.
Thanks for sharing your experience on this. We have some information on our website that you may find useful, you can find this here: Produodopa | Parkinson's UK - you can also pop our helpline a call on 0808 800 0303 and our team can support.
We’re sorry to hear this experience, and we understand your reservations. Medication works differently for everyone, but please make sure that you are speaking to your GP or healthcare professional for a medical analysis that’s suited to you.
I have had the pump for 2 weeks. It started off well. Some night dyskinesia but that settled down. However, 3 or 4 days into the treatment all went downhill.
I was having off times worse than I ever had before. There have been small windows here and there when I was feeling good, but since then I have had more or less continuous off time.
My nurse has upped the meds by minimal amounts which have made very little difference. It just feels as if the meds are not working at all. I am getting very frustrated with the whole thing, and am just told it will get better. I notice you have been on the programme for 4 weeks. Maybe I am expecting too much?
Hello @Musical66, it’s great to see you active in our forum again. Welcome back!
We’re sorry to hear that you’ve been having more off times, it sounds really frustrating for you. We’d recomend getting back in touch with your Parkinson’s nurse to see if there’s any other options that could ease the discomfort you’ve been feeling, as they are best placed to advise you with your specific circumstances.
We’re here for you, and if it would help to chat things through with one of our Parkinson’s nurses on our helpline, please do give us a call on 0808 800 0303. The opening hours are Monday to Friday: 9am to 6pm and Saturday: 10am to 1pm.
We really hope that helps, and that things get easier for you. We’re sending our best wishes
