Hi all,
I wonder if I may be in touch with anyone who has any experience of the new Produodopa pump treatment.
I started the Produodopa pump treatment 2 weeks ago.
I would be very interested in how anyone is getting on currently.
The first couple of days for me were an absolute epiphany. My dyskinesia, particularly lower body, ceased immediately. The sweats I had half of the day disappeared. My walking was in a straight line immediately, and my bowels returned to a regular daily movement. Then after a couple of days I started to feel spaced out, not exactly dizzy, but more slowed down, deliberate, and slow of mind. This has worsened over the past week. I had hoped this was just my adjusting to a new drug. Because the treatment is so new, I have no notes as such, to compare with. I have an appointment with my Pd nurse in a few days time. to review.
I was taking Sinamet, alongside oral agonists, but 20 years on since diagnosis, and a young onset, the oral drugs have become next to useless.
I would love to hear from anyone who wants to share their experiences… as the treatment is so new, I have very little feedback to compare with.
Hope to find someone who is trying the new treatment to hear your point of view.
Thank you so much.
Love to all,
Chris
Hi Chris,
We’ve got a few people on the pump, and some of them have left rather detailed notes of their experiences. You can quickly find these threads using the search function in the top right corner. And of course as always you’re welcome to direct questions to the helpline on 0808 800 0303.
Wishing you the best,
Jason
Forum Moderator
Hi, there’s a guy over on HU ( CPT) that has set up a WhatsApp group on this very subject. Blazyb is his username I think.
thanks Ed