Apomorphine Infusion Pumps Patient Views

It is approved in Canada & EU but still pending in the USA.

Vyalev is a skin infusion. It has a little pump, tube, and skin patch. It would be simple to remove when swimming, and there is no risk of infection. I am very hairy, so I suspect I would need to shave patches to attach the skin patch. The patch moves around, so I'd end up looking like a patchwork bear. The same technology is used by T1 diabetics (USA approved).

The Duopa pump is similar but pumps C/L directly into the small intestine. It requires outpatient surgery to install. The pump is coupled to the skin, so you can disconnect it and have a waterproof covering for showering or swimming. There is a risk of infection or pulling out of the tube.

Apomorphine infusion improved off time by more than two hours a day; however, it surprisingly did not influence quality of life. The primary outcome variable for the study was the change in daily dopaminergic off medication time. The apomorphine infusion reduced off time compared with placebo. Data from 106 participants was analyzed. Six subjects in the apomorphine group withdrew and 44 percent had nodules (growth of tissue) where the pump was infused. The most common side effects were erythema (reddening of skin) at the infusion site, nausea and dyskinesia.

The dyskinesia scores among participants were so mild that it would be hard to judge how the apomorphine therapy would have performed if administered to moderate to severe dyskinesia cases. However, one could speculate that the apomorphine infusion would likely worsen dyskinesia as it did in 15 percent of subjects who were randomly chosen to receive the apomorphine. Finally, the four-week period where medications and apomorphine could both be simultaneously adjusted in the study, made the results difficult to evaluate. Regardless, since the study design was double blind, there was a clear benefit in improving on dopaminergic time in the apomorphine, but not in the placebo group.

The apomorphine pump is really good for dystonia..it means you have a constant medication 24ha day. I had a pump for 5 years before I had the dbs op. It changed my life!!

awesome news Alex and Jordan!!

i have run into a few challenges with the cannulas that have affected the frequency I change them. i will try to keep this concise but if you're interested in the longer story, feel free to contact me at nan dot tries dot art over on g mail. Unfortunately there doesn't appear to be any message board or dm sort of functionality here...

We started off changing it daily as recommended.

But I have run into some skin issues that we are making placement more challenging, so a couple of weeks ago maybe we started changing it every other day to limit how many locations we would need in a two week period.

I had an appointment yesterday and they suggested going back to daily and trying my thighs for cannula placement so my stomach would have time to heal.

However I noticed the most recent parkiemom13 channel on YT has a video with an approach she is using for skin issues, so I may try that as well.

The biggest recommendation around changing cannulas is to figure out the placement approach you want to use and start it from the very beginning. It is REALLY difficult get one started after the fact.

good luck!!

The pump can be disconnected while sleeping, but this requires starting a new sub-dermal infusion site in the morning. There may be some ups and downs in medication blood levels due to switching back to oral medications.

I have been going through the process of procurement for vyalev. I am supposed to be receiving a call from the nurse ambassador soon within the next week. I will be the guinea pig for my MDS's practice.

Thanks for the information Taylor. I look forward to hearing about any updates you may have going forward.

Alex you might want to check out the YouTube user @Parkiemom13. She has posted a few videos about the pump that got me interested.

It's not really surgical AFAIK. I know there's the pump that goes into your stomach. That's not the one he's getting. He's getting the subcutaneous one which was officially released in February this year, that's why I said it's new. Also, I think the compound is foslevodopa/foscarbidopa from what I've researched. Maybe we're talking about two different things?

He really wanted the DBS but was denied the surgery because of his age (he's now 74), and by then this new pump was already done with its clinical trials and about to be sold in his country. His doctor claimed back then that the pump has been delivering similar results to DBS while being a much simpler procedure. The pump is a lot similar to the one a diabetic would use, while DBS requires brain surgery, so we agreed that if we could get the same benefits without the risks, especially considering that though my father will be 75 soon, we're totally going for it.

I'll leave a couple of links I've come across with but like I said I don't know many details. But as I mentioned, we might be talking about different things because everyone keeps saying it's a new thing whereas you mention it isn't.

https://youtu.be/NdXQQ10HUb0?si=KD-DHpxmLXrtWDeK

https://youtube.com/shorts/xbL5-9zyhCw?si=8mWedFzmc7R6QnnE

I have been approved for the Vyalev pump just today. I am awaiting education on the medication and the delivery system. My MDS says good results. 3/13/25

I am finding any food interferes with my meds. And I am really getting sick of it. I wish health Canada would finally cover the new infused just under the skin thingamabob!!!! Yes that’s technical!!! I even emailed health Canada. Let’s just say food is not improving my quality and of life!!!

Yes, i have heard that as well. We try to be very careful when changing it, and move the cannula daily at first, now every other day.

Oh yeah one other thing to keep in mind. Don't expect a full 24h out of it. It will vary depending on your dosage plus whatever extra doses / rate changes you do. Have you been through training yet?

No worries about typos. I feel your pain. Thank goodness for auto complete

Gosh sorry ! Didnt have my glasses as usual..i meant apomorphin..and exercices