Coming off Neupro : Last night I started... - Cure Parkinson's

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Coming off Neupro

Parkie1 profile image
9 Replies

Last night I started taking opicapone 50mg, so we'll see how it goes . I want to eventually come off the DA, though the PD nurse doesn't, and I don't want to rock the boat just now, but I wondered if anyone has tried to reduce the dose by gradually taking it off earlier by stages ???? All ideas welcome!

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Parkie1 profile image
Parkie1
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park_bear profile image
park_bear

Yes, for coming off of a dopamine agonist such as Neupro it is necessary to taper rather than quit all at once.

Parkie1 profile image
Parkie1 in reply topark_bear

Thanks park bear. I'm not keen on cutting the patch so I wondered if reducing the time over 24 hours would work. I've already taken today's off 1 hour early and plan to see how that goes for 1 week ,then 2 hours earlier etc. It would be interesting to know if anyone has tried that with success.

Parkie1 profile image
Parkie1 in reply toParkie1

I just answered my own question using parkibot . I don't think I was specific when I tried it previously. I took opicapone at 11:30 last night, and already have found my on time extended by 30mins 1st,2nd & 3rd doses ,and 90 mins 4th dose ,so I'll probably be 2 doses less by the time I take the next opicapone. I'd rather be cutting out the DA instead though.

" Why Reducing Wear Time Isn't Recommended"Reducing the time the patch is worn is not the manufacturer-recommended or FDA-approved method for dose adjustment [1], [2]. Here's why:

Unpredictable Dosing: The patch is designed for 24-hour release. Removing it early might not result in a simple proportional dose reduction. Drug release rates can vary over the 24 hours, and removing the patch prematurely could lead to unpredictable and fluctuating plasma levels. This variability could potentially worsen symptom control or introduce new issues.

Loss of Continuous Delivery Benefit: The primary advantage of the transdermal patch is providing sustained drug levels [3]. Shortening the wear time interrupts this continuous delivery, potentially leading to periods with sub-therapeutic drug levels, mimicking the "wearing off" experienced with some oral medications.

Lack of Supporting Data: There is no official guidance or clinical trial data supporting dose titration by altering wear time for Neupro. Clinical studies involve specific patch strengths worn for 24 hours, with dose adjustments made by changing patch strength [1].

pearlette profile image
pearlette

All "patches" for any medicine works by giving a "fixed" dose per minute .Examples 1 unit/ mg or whatever.

The actual preparation maybe for 12 hours or 24, 36,72 hours etc.

As long as the patch is on you, you will get 1 unit every minute. Over 24 hours you get 24 units.

If you cut the patch into half (assuming the structure allows it to be done without compromising the outflow of the drug, be it too fast or too slow) you will get 0.5 mg per minute or 0.5 x 24 (=12 units) per 24 hours)

When you remove your full patch 1 hour earlier you are reducing your regular dose to 23 units per day.

But at some stage you are potentially going to have half a day with no drug /or low levels depending on half life.

For some drugs it matters.

For some it does not matter.

You also have to take into account that absorption or delivery of a drug via skin is extremely variable on individual human factors like body temperature, type of tissue under the skin (babies and old people absorb more water), and several other interactions of increasing complexity.

So in effect nobody gets the perfect dose of 1 unit per minute delivered into the blood stream. The range delivered can be anywhere between 0.1 to even more than 1 unit per minute (too easily absorbed).

So not an exact science (hence the broad cautionary advice from manufacturers and prescribers.

But it would be inadvisable to make decisions without understanding your own physiology.

LuckyLuke profile image
LuckyLuke

I went through it last year. Neupro is tapered off by 2 mg every 10 days—I was on 8 mg. To make up for the withdrawal (DAWS) from Neupro, you need to increase Levodopa, then gradually bring it back down to normal levels. How tough it gets depends on how much Neupro you were taking and for how long—the longer and higher the dose, the worse the DAWS. My advice? Do it with an experienced neurologist who can guide and support you. It’s not easy, but it’s doable.

OKWY profile image
OKWY

Yes, I've taken my hwp's patch off earlier. He had to be switched over to Neupro in hospital because he had a stomach blockage and could take in nil by mouth. After the operation, I was told I could just switch him back over to Madopar, but I did taper down the patches first by removing them earlier. It was a case of getting them off was better as he had side effects on them (halluzinations). I reduced over days, not weeks

Parkie1 profile image
Parkie1

Thank you to all who have commented. I've been on 4mg patch for 1 year 9 months, though I've tried going back to 2mg twice due to dyskinesia, but 'wear off' got worse so it was helping a little, which is why it was prescribed. My hope though, is that opicapone will replace the need for rotigatine as I don't like the idea of a "cocktail "of drugs, so I will wait till I see the movement specialist in 2 months. I think she may be keener than the PD nurse to reduce it. Thanks again, much appreciated

LuckyLuke profile image
LuckyLuke in reply toParkie1

It's not a high dose, and you haven't been taking it for too long. However, you'll definitely notice its absence after a couple of weeks. Opicapone doesn't replace it—nothing truly replaces the effect of DAs, not even LD—but it definitely helps stabilize it. You need to be patient, accept a more or less long adjustment period with sudden wear-offs. If your doctor is skilled at managing it, it's absolutely doable. Best of luck!

Parkie1 profile image
Parkie1 in reply toLuckyLuke

Thanks LuckyLuke . Good advice from experience.

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