Apomorphine pump or duodopa pump?


#1

Hi everyone, my mum Jennifer who is 62 years old was diagnosed with Parkinson’s in 2010. She was fine for a few years then sadly went quickly downhill. She had to retire on the grounds of ill health and now has carers visiting 4 times a day as she lives alone as she was widowed in 2003. She is now at the advanced stages of Parkinson’s with drastic on/off fluctuations and dyskenesias. She can’t leave the house herself and is very often in a wheelchair.
Last year we went through the very long process of being assessed for DBS. We had our hopes up about this. My mum did well in the levodopa test and showed a good response to the drug, however she failed the balance test and they were worried that her already low speech would get worse if they put her through the surgery. She also didn’t score as highly as they wanted in the retaining new information section of the in depth memory and thinking test. We were devastated she wasn’t getting the surgery but the consultant at the results appt suggested the duodopa pump instead. This felt like light at the end of the tunnel and some new much need hope for us all! We had to speak to the Edinburgh consultant about progressing the pump. We waited a few months for the next appt. The Edinburgh consultant said he wants to progress the apomorphine pump instead. He said it delivers the same benefits and he only has one patient on the duodopa pump and therefore a lack of experience. I’m unsure how I feel as I’m obviously glad he has suggested something but it’s not the one I had spent time researching that the Glasgow consultant suggested.
I have since read up on the apomorphine one as well but I struggle to find information comparing the two.
I think from what I’ve read the duodopa one can be used more long term, maybe has more instant effects, easier to administer each day and could mean she could reduce most of her levodopa tablets she takes during the day. She has a good response to levodopa which is the drug in the duodopa pump so I thought it seems logical that this is a good option rather than changing the type of drug as well.
The Edinburgh consultant said the only reason he wasn’t offering the duodopa pump was due to lack of experience with it.
Just looking for some help. My mum’s quality of life is so poor just now. She was always so active before and such an amazing mum. I just want her to get the best possible treatment and not be restricted due to experience or cost. Anyone offer any help/advice? Thanks so much, Alison


#2

Some years ago, I was going to have an Apomorphine pump installed. I had a small test injection of Apomorphine and within a few minutes I felt like running - the effect was spectacular. In the end I did not follow through with Apomorphine because it is a dopamine agonist and the side-effects of such drugs do strange and unwanted things to my brain.

Duodopa involves surgery to install a tap that allows a levodopa gel to be pumped directly into the small intestine. Search YouTube, there are some videos on the subject.

If your mother tolerates dopamine agonists, I would suggest she tries the Apomorphine option first. It’s less invasive. If that does not work, Duodopa may be the next choice.


#4

Thanks so much for your reply :blush: that’s very encouraging you felt such good results.

My mum had the pen years ago along with her normal levodopa tablets but was only ever on dosage 2 for the pen and it stopped working so well so she just stopped taking it and it was never followed up again. I’m not sure if that was one that made her feel sick too. She’s been through so many different ones over the years and hasn’t really tolerated any very well other than the levodopa that she’s on now.

Can there be quite bad side effects of the dopamine agonists?


#5

Hi @alisonlouiset,

Welcome to the forum.

Glad to see that you’ve received some helpful advice from @Martini. Unfortunately, dopamine agonists does come with its fair share of risks and side effects which we detail on our website here - https://www.parkinsons.org.uk/information-and-support/dopamine-agonists.

In light of the information you’ve shared, it sounds like your mum has struggled to find the right medication to help manage her condition especially as it has progressively gotten worse over time. Therefore, I’d strongly recommend you contact our confidential helpline and speak to one of our trained advisers about this so they can provide you with more information and support.

They have extensive knowledge on Parkinson’s related medication and treatments and would be happy to support you further on this, do give them a call on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected]

Best wishes,
Reah