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
Hi Chris
How are you getting on with the pump? I’m very new to this forum but my husband started using the pump two months ago. It’s been a bit up and down but some good days as well as some challenges. The infections around the cannula sites are hard to control and if you have any tips I’d welcome hearing them.
Have things settled down for you? It’s quite difficult to assess the impact when there is nothing/no one to compare his experience with.
Best wishes
Tracey
There are some very good videos On YouTube about this technology which seems to be fairly readily available in the USA now that the Produodopa has received SMC approval. Try searching for ABBIEVIE AND VYALEV [CHICAGO] for one approved technology. There are evidently several neurology departments trialling this in the UK on selected patients. I guess it may be part of the usual NHS v manufacturer negotiation. Part of the problem apparently lies in producing reliable backing infrastructure for the technology-- PD nurses and sample supply vials/syringes of the phosphorylated drug derivative— it may need to be refrigerated for storage for example. Another example of how treatment releases are delayed by bureaucracy. In terms of dosage regime one tip was to reduce the flow by 50% at night time since the bodies natural demand is less when sleeping. Wonder if it’s ever coming to Scotland for a wider number of people.
Hi Chris ,
At last ! Able to chat to someone else , more or less in the same boat. I was diagnosed in 2003 - and also young onset. After around 15yrs on various concoctions i ended up on Madopar and Ropinerole - obviously not the best . I ended up with Impulse Control problems (gambling) and was taken off all agonists - we tried everything but i was told i could go onto Produodopa infusions. This is non- surgical , absolutely perfect for me !
Ive been on it for 3 months and , apart from a few specialised problems ive needed to sort out , i have nothing but praise for what i now have. My problems were mainly centred around me being able to continue my exercise regime (London Marathon 2023). Ive sorted tge problem of the pump being secured so it doesnt move while i run - i say run , at tge moment its more lke speed walking !! But i still do Parkrun every weekend - im on #198 at the moment.
It would be fantastic to have someone to chat to .
I’m in Carlisle, not too far from the border. !!
Hi, ive been on the pump for 3 months. Had one infection but cleared up with antibiotics. Not having many problems , mostly related to exercise and securing the pump. A smaller pump would be ideal .
Thank you for sharing, my husband is on his third course of antibiotics in three months!
I would like to get it more under control, I don’t think the dose is right yet, but hopefully he will get there.
Video was really interesting.
Many thanks