New parkinson's treatment available on the NHS

[Grumpy77]

Produodopa. Glancing briefly through, seems to me like a more convenient form of administering meds to the bloodstream consistently

I hope carrying a pump kit around would be a hassle that would be worth it

BBC News - New Parkinson's drug Produodopa to be available on NHSbbc.co.uk/news/health-68316877

[gingerj]

Hi grumpy. I enquired about this with my Neurologist and received a letter yesterday telling me that it is only being treated as a last resort treatment. Behind DBS and apomorphine. It's about the cost. I'm disappointed because i believe it has to be much better for people like me who struggle to get anything out of my meds when I eat. I guess as the price comes down this might change.

[Grumpy77 in reply to gingerj]

You're correct that its restricted dueto cost. They already have a set number: 1000 pwp. In Comparison with DBS I don't know how expensive it is. Let's hope with time they will also expand to it medium stage parkinson's

[gingerj in reply to Grumpy77]

Taken from the abbvie website. Nhs Produodopa 240 mg/ml + 12 mg/ml solution for infusion: 7 vials x 10 ml: £592.90.The maximum recommended daily dose of foslevodopa is 6000 mg (or 25 ml of Produodopa per day equivalent to approximately 4260 mg levodopa per day).

So I take about 1000mg per day. 1 vial of 10ml is £84.70. 1ml is equivalent to 172mg

So my starting daily dose would cost about £49

That's £17,500 a year.

DBS costs about £100,000 per side

I still think it should be offered to those pre DBS based on this costing.

[Seamus6 in reply to gingerj]

Hi ginger, I'm not sure how long the NHS can insist on this treatment being "last resort"

I'd have thought that having holes drilled into your brain (with an associated mortality risk) was pretty much last resort.

If I were you I'd keep pushing.

Good luck.

[gingerj in reply to Seamus6]

I will try. I think it will be more readily avaliable a few years ahead as the price drops.

[Buckholt]

Must be considerably cheaper than DBS! Like all these things, if it works well and keeps patients stable and out of doctors surgeries, then there could actually be a saving in the long run. I suspect they are avoiding making too many promises at this stage and see how well it works before extending the use

[Bluebell2022]

seems it’s only available to those with advanced disease

[Grumpy77]

Produodopa replaces DBS + meds

But DBS doesn't replace meds

[rebtar]

I met a woman who was in the trials and said it was life-changing. Daily set up was a hassle, but otherwise very pleased with result.No more Rollercoaster between doses, able to eat, exercise, have a pretty normal life.

[Grumpy77 in reply to rebtar]

Good to hear its working well

[Zardoz]

Does anyone know the status of this device in the USA?

[dkdc]

Expected to be approved in USA this year. One survey of movement disorder specialists said they would recommend it over DBS. Can leave "burns" where patch is placed, but I would go for it. Probably hard to get when released in the USA due to cost as well. I guess they only want to give it to us if we are rich or if we are at deaths doorstep. Needing it to avoid pain and difficulty doing things is not a good enough reason?

DBS is a very safe surgery - if you have a good surgeon.