Foslevodopa-foscarbidopa

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.

2 Likes

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.

Saw my Neuro last week and I’m going to have the foslevodopa pump, probably in March.

He said there are only five Hospitals in the UK at the moment who are offering this treatment . It costs £30.000 per year so there is a strict criteria, including having already had a DBS fitted but not working well.

wow, that’s a lot of money! and having to go through a failed dbs treatment first is a very tough precondition.

anyway, if you know the names of the 5 hospitals it would be nice to know.

Hello parkiejoe
I am possibly being considered for the pump too but I have not had a failure with dbs rather I am not in a position to be considered for dbs because of increased risk caused by my hydrocephalus - the other medical condition I live with. As I understand it this treatment is primarily targetted at those of us for whom other interventions do not work or are not appropriate - unless that has changed since the conversation I have had with my consultant. Not only, in my personal opinion, would the precondition of a failed dbs treatment be ‘…very tough…’ I also think it would not be a fair precondition excluding at a stroke everyone else.
Tot

1 Like

Agreed, I saw the new pump being described as a 'last resort ’ treatment - it seems to me that having holes drilled into your brain and being connected to a battery pack in your chest, is really the last resort…

I can see why you say that Ed2 but I’ve had a shunt fitted for the hydrocephalus so have a drain from the ventricles in my brain into my stomach and believe me if it makes a difference it’s worth it. I will be forever grateful to the pioneers of such surgery and the brave patients who really took the risk when much was new and unknown and it really was a last resort. Nevertheless your comment is more than valid and rather in the vein of black humour which I love and believe is a great coping strategy when faced with major obstacles and decisions in life -although I accept it’s not everyone’s cup of tea lol.
Tot

I’m having mine done at the Royal Berkshire hospital in Reading

Good luck carolineb211. Hope it goes well and that it makes a lot of difference to you. If you feel up to it, I would be interested to know how you found the process and how you got on.
Tot

I’m not sure a ‘failed DBS’ is quite the right phrase. Because of Produodopa’s expense it’s true they have strict criteria as to who gets to have it, so will look at DBS, duodopa and all existing medication routes first. But they might rule out DBS as being inappropriate for you for very good medical reasons - perhaps your PD is characterised by mainly cognitive symptoms, or you are haemophiliac or whatever. It’s a medical judgement about what is right for you.

Indeed. I saw my neurologist today and was given the distinct impression that If needed further down the line, the pump could be made available if I simply didn’t want DBS.