Good morning. Has anyone any experience yet of the new drug Foslevodopa-foscarbidopa that is delivered 24 hours a day via canula? While it been hailed as a bit of a game breaker yet to hear much about real world experiences of it from people. Im due to speak with my fathers parkinsons nurse this week and i think hed be an ideal candidate…76 yo, tablets dont seem to help much anymore, during the night early moring is a real issue when the tablets where off
the rollout has been limited/slow / restricted as more clinical experience is gathered-I believe the treatment is expensive and patients have to be " converted" from oral to subcutaneous drug input under medical supervision ? still worth pursuing mind!
I saw my consultant just this week and he asked me if I would be interested in being put forward to try this. Due to the expense he thinks they will only be able to offer it to about 10 people locally in the first wave so I feel very lucky to even be offered the opportunity - and I have to say it was nice to be offered it rather than my having to ask for once. There are a lot of things to be sorted out and it could take about 12 months but I am happy to provide a ‘running commentary’ on my experience as I go along - obviously my experiience won’t be the same for everyone but it can’t hurt to hear a bit more about it. Watch this space.
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Thank you it would definitely be interesting to hear how you get on. I mentioned it to my dads parkinsons nurse and she was a bit clueless about the roll out and availability in his area. Frustrating.
As I understand it at the moment my consultant is waiting for it to be agreed locally but is fully expecting it to go ahead. but I will post each time there’s a development.
Tot.