subcutaneous Levadopa delivery

[jeeves19]

As we all know, a ‘cure’ for this disease seems about as likely as finding a pot of gold at the end of a rainbow. With that in mind, I try to focus on things that might be beneficial and make life better for us. One such idea is the delivery of Levadopa subcutaneously. I believe that there was some research and initiative being carried out in 2022 but I haven’t heard of much since. Does anybody have any positive news on this ? 🙏.

[WinnieThePoo]

news.abbvie.com/2024-01-09-....

[jeeves19 in reply to WinnieThePoo]

Thanks Richard.

[Grumpy77]

Hi jeeves, was it you who had DBS done a while ago? If so, generally speaking, how much symptoms relief have you had? My apologies that this is off topic

[jeeves19]

so so Grumpy. Dystonia pretty much gone but bradykinesia still lurks and relatively often. But I would do it again I think 🤔

[seamusw in reply to jeeves19]

did you consider Fus?

[jeeves19 in reply to seamusw]

Not at 25k for each side of the brain no!

[saraoutwest]

It looks like abbvie has been FDA approved but currently only used for late stage PD. Like you I’m setting my sights on symptom control at this stage rather than the miracle cure. L/D works well for me (when it works) I have terrible gut/absorption issues. Any food (not just protein) seems to affect it. Sometimes it takes 1.5hrs to kick in and then I only get about 1-2 hours relief before the whole process starts again. Lucky me. What fun. I’m 8 years in, and looking at the long term options. Subcut L/D looks promising, but I want it now not late stage!

[Juliegrace in reply to saraoutwest]

I don’t think it has FDA approval yet. It was rejected last year. Something to do with the pump. Abbvie is suppos ed to re-apply sometime this year and it’s been approved by EU which is a good sign.

[limcheeese22 in reply to saraoutwest]

Have you had DBS yet?

[Buckholt in reply to saraoutwest]

Your situation sounds very like mine. Sometimes I have decide whether to eat or whether to medicate. Both at the same time is tricky!

[pdpatient in reply to Buckholt]

Buckholt . At the risk of sounding a little crass, I have to admit that I sometimes wonder (during the times that I am doing better with my symptoms) whether Parkinson's was really a bad thing to happen to me.

I was extremely obese at diagnosis and had poorly controlled diabetes. Today I am 90 pounds lighter after 11 years of living with it and with well controlled diabetes. I am forced to time and measure my meals and work around my medications and I cannot eat whenever I feel like it. As you said, I literally have to choose between eating and medication. That is something that I could never have done on my own.

Needless the say, medication always wins and my body thanks the powers that be for the mixed blessings 🙏😇🙃

[Cagey84]

it’s been approved in the EU, UK and Canada. It’s known as Produodopa in the UK and EU, and Vyalev in Canada.

[qazwsx11]

I actually participated in 3rd phase of the medical trial and I still use Neuroderm. I’m glad to have this opportunity. While it is not without kinks, I really like to wake up in the morning and be ready to go.

[jeeves19 in reply to qazwsx11]

Thanks very much for that

[Jana86]

The FDA is supposed to let AbbVie know in April. Trial participants rave about it, especially those who have serious uptake issues and fluctuating responses to meds from day to day. (like me!!) Reported advantages are steady feed so the ups and downs are prevented; less drugs in your body so overmedication is less frequent. Problems with rashes at the input site were too frequent according to the FDA...but I will happily trade a skin rash for the bizarre and unpredictable life I have now.

[jeeves19 in reply to Jana86]

Thanks Jana

[gingerj]

I think it sounds like a great solution for people who struggle to balance meds and eating. With this in mind, I've requested a meet with my Neurologist to discuss whether this could be an option available now. I'll be seeing him a week today. Reading up on it the NHS has been advised to offer it as a last resort. This may be due to the cost. I think I've seen its £90 a day. Might be wrong. I've also read somewhere that other players about to launch their products which might bring the price down. 🤞

[rebtar]

I asked my neurologist, she says she expects approval later this year. No idea what Medicare (US) will cover, or what criteria, until it's available.

I spoke with someone who was in the clinical trial, she said it's not perfect, but sooo much better than the Rollercoaster of C/L dosing. . She's using a much lower dose overall.

[Buckholt]

I wonder why solvable/dispersible levodopa is not more mainstream? I’ve not used it myself but absorption is meant to be reliable and so why isn’t this form of delivery more regular in use?

[pearlette]

My neurologist mentioned a year ago that it was likely to reach the UK around 2025. Iam quite keen on this option as it would be easiest for me to use when I return to live in India.

Transdermal Patch like stuff are impractical in hot humid places where you shower several ties a day.

[Sandmanliz]

is the subQ a continuous pump?

[jeeves19 in reply to Sandmanliz]

Yes I think so.

[garygjs]

A report about it on ITV news today, Jeeves.

itv.com/news/2024-02-16/nhs...

[jeeves19 in reply to garygjs]

Thanks very much Gary. Greatly appreciated