apomorphine, anyone on this?

[Todd-pw]

Hi all,

was offered apomorphine with pump not injection. is anyone using this and has it made a difference i know everyone is different just trying to get a bit of perspective before i start it? been having issues with oral forms of medication either dyskinetic on or cant move off not much in the middle.

digestion has been ok food wise thanks to B vitamins but Sinemet just doesn't give me enough on and when it is on its too much to the point i look forward to being off again.

Also been offered DBS done all the tests and stuff but wanted to try apomorphine before DBS.

the AbbVie levodopa pump is only available if you are not suitable for DBS due to it being a new expensive treatment. which i find surprising i would've thought DBS is the last option.

thanks guys

[park_bear]

Immediate release C/L Is prescribed by default, but many people do better on time release versions. If you have not tried this I encourage you to do so. More here: healthunlocked.com/cure-par...

[Todd-pw in reply to park_bear]

thanks as always park bear appreciate your input👍

[Natajo]

Hi Todd,

My friend has had the apomorphine pump for nearly a year.

It has been helping a lot although it does not slow the pace of the disease.

The great difference is that it provides a continuous flow throughout day and night. You have the possibility of adding extra dose called bolus. Everything is adjusted according to your need. It is costly because there’s a watch of nurses. You can also combine it with your current levodopa/ carbidopa. The adjustment is very fine.

The minus is that it creates nodules that need massaging.

Soon will be coming the liquid form of levodopa/carbidopa (foslevodopa) to be administered through the same kind of pump, so I would think better to wait and see before accepting the operation and first try the pump.

Best,

Nathalie

[Todd-pw in reply to Natajo]

thank you for your advice

[irenemonte in reply to Natajo]

I have been awaiting the FDA approval of this pump with subcutaneous administration of c/j continuously 24 hrs a day. The peaks and valleys that I get all day long are exhausting- not leaving me enough dime to eat meal all day long-. So not only do I get the OFF times due to the digestion of protein but now I am effected by any meals /food because PD causes very slow digestion hr ce my meds will not cut through thr food so I am now OFF until I digest all y this food usually 3:5 yours. I heard that we are waiting for FDA approval pb the pump device. Canada has approved thx pump device and med as of February 2024…Europe has been using it since last winter 2022. Has anyone heard any news on the FDA approval of this device?

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[Jebbie12]

I use a needle for my Apokyn. It saves the day for me when my meds aren’t up to speed. I use ,3 mg/ml. I also had DBS. 4 years ago. I have had PD for nearly 16 years and have a high quality of life. I would recommend both! But try Apokyn first. That might do the trick! Good luck to you.

[gomelgo in reply to Jebbie12]

Could you please give examples if the "high quality life" here?

[Jebbie12 in reply to gomelgo]

I don’t need assistance, I travel, frequently have lunch with friends and enjoy life. I exercise nearly every day and bike tandem with my husband who also has PD

[gomelgo in reply to Jebbie12]

Wow, inspiring. And how did you happen to be married to a pwp as well?

[Jebbie12]

My husband was diagnosed 13 years after me. We grew up in the same town (originally farm land) so we figured that must be it. But not sure. It was hard to imagine at first that it would be PD. But sadly, it was. We are very in tune with each:other, but this is ridiculous

[jeffmayer]

I started it about two.months ago it's not a miracle cure I can walk.now without falling.ovdt when I'm not wearing it I can tell I would suggest you try it. Before d s

[mach262]

Todd, I'm on the path to DBS and was tried on injection Apomorphine. It works at 2mg but lasts about 40 minutes. I can stab myself up to 4x a day. Unfortunately, it causes yawning and sleep so I get no benefit as the tremor disappears when I'm asleep anyway. I don't respond to meds, even Sinemet. They seemed keen that I wasn't on the pump because of the side effects. Seems odd that a drug mainly used on dogs should help with tremor. I'm considering focussed ultrasound for the symptoms as I don't hear great reports about DBS. Good luck!

[cjCardio53]

I take the apomorphine sublingual, it saves me.I would love a pump, not avail in US yet?