Any advice? Good/bad experiences with the Neupro patch for PD?

[Nikosmom]

I was diagnosed with PD in 2013. No meds till 2 months ago C/L ER 25-100 mg 3x a day. for a month and half. some improvement but not great. My new neurologist wants to take me off the Sinemet ER gradually and start me on Neupro patch to reach 8mg. I have no cognitive or balance issues, mainly tremors and rigidity. My skin is easily irritated and I have a weak stomach. Any advice is greatly appreciated.

[Hikoi]

Nikosmom, I wonder why you were started on a slow release med? It is usual to start on an immediate release. Personally I find it hard to reach an effective level of medication with ER so i dont feel fully on ( normal) like i do with immediate release.

. I think that you were probably undermedicated as well. You are now 7-8 yrs into PD and 75% of 300 mg (approximate equivalent with IR ) is a very small dose. I know you haven't used meds but sometimes there is catchup to do.

As to patches, not available where I am but have many friends who have used them successfully. You will get many and perhaps frightening warnings about agonists, and yes there can be compulsive behaviour side effects you need to be aware of but they are very useful drugs too. Age matters and I don't know your age but just be aware of ages of respondents There are different treatment approaches depending on age.

Sorry, no definite answer. But there never is!

[Nikosmom in reply to Hikoi]

Thanks for your input. I tried to answer your questions but something happened to the posting. To recap i am 70 years old and the reason for such small dosage and CR is because my first neurologist is not that knowledgeable of P D treatments. I had to coaxed her into prescribing the meds. I appreciate your help.

[Hikoi in reply to Nikosmom]

Gosh, I realise with a start that am that old too!! But I have been diagnosed 13 years so a bit longer and have taken meds all along. Given your age I would question about starting on agonists (the patch). I think UK advice is not to start on agonists if older as they are not as well tolerated. The drug of choice is c/l immediate release. I would ask the neuro who wants to start you on the patch what advantage there is over c/l.

[park_bear in reply to Nikosmom]

Your neurologist prescribed correctly for that dosage interval . For dosing at 6 hour intervals or greater CR is the best choice. See charts of plasma levels of levedopa for CR vs. IR here:

healthunlocked.com/cure-par...

If you need to dose more than 4x daily IR may then be a better choice.

[Nikosmom in reply to park_bear]

Thanks. You seem very knowledgeable. What s your opinion of the neupro patch? My new neurologist was certain it would “make me feel wonderful “. I’m not convinced I would prefer to experiment with C/L first, maybe try the IR and add a 4th time. Please advise.

[Nikosmom in reply to Nikosmom]

I re-read your posting (i have read it when you first published it and i thought it was excellent). My current C/L CR 25/100 3 x has taken the edge of my worse symptoms but at no point i feel great. Tremors and left side rigidity and some fatigue primarily the problem. Some neuropathy during off times. Otherwise, I sleep great, no constipation. No cognitive or balance issues,no anxiety or depression Sorry to be so wordy.

[park_bear in reply to Nikosmom]

No apology necessary! Complete detail is important!

A simple thing to try would be to add another half dose of C/L ER to some or all of the doses of your existing regimen.

C/L is for symptom relief , which is important. It is also important, in my opinion, to pursue disease modifying interventions such as:

• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/ healthunlocked.com/cure-par...

• Cinnamon, extensively researched by Prof. Kalipada Pahan, PhD. My report healthunlocked.com/cure-par...

•Mannitol parkinsonsnewstoday.com/202...

healthunlocked.com/cure-par...

• Ambroxol healthunlocked.com/cure-par...

• Sulfurophane from broccoli seed, courtesy of our very own Albert Wright. Helps with nonmotor symptoms: patientresearcher.com/2021/...

Best to do these one at a time so you can tell what is helping.

[Nikosmom in reply to park_bear]

Thanks for the comprehensive list. I was familiar with all except the broccoli. I’m currently pursuing the ideal high dosage of thiamine I suspect i need to have my meds stable first but am taking 2000 mg daily. Mannitol will be next. I’m taking 16 oz of celery juice daily and celery is high in mannitol and keeps me regular. Thanks for the care you have taken to answer my questions.

[gwendolinej]

Hi there, Nikosmom, our experience is probably not relevant to your case ,but it’s worth knowing ..my husbands main symptom was extreme apathy, but diagnosed as Lewy Body Dementia, until a neurologist at the Movement Disorder Clinic he was attending suggested they try the Neupro patch. He’d “seen it work”. His comment a few weeks later was “I’ve never seen it work like this”. My husband was off the bed, functioning cognitively normally, socially interacting and was rediagnosed with Parkinson’s.

Gwendoline

[Nikosmom in reply to gwendolinej]

Thanks for your comments.

[Smittybear7]

What works for tremors and rigidity?

[OAFC]

Be careful of the compulsive behaviour side effects it can give you especially on a higher dose..I started gambling and unfortunately won and lost thousands of pounds and couldn’t stop so i took myself off the patch and within 3 days never got the urge to gamble again…

[Nikosmom in reply to OAFC]

Thanks so much. I might need to lose some pounds but not dollars.

[park_bear]

Since you are getting improvement with this modest dose of C/L ER and not having any adverse effects you can look to increase the dosage.

Is absurd to replace this with a dopamine agonist which is associated with a whole laundry list of adverse effects starting with impulse control disorder and also including orthostatic hypotension (loss of blood pressure upon standing). If you got along okay with your former neurologist I would go back.

[Nikosmom in reply to park_bear]

Thanks. You make sense

[Jlloy5]

I had a good experience with the patch. It helped me immensely. I quit using it after having DBS. I did not have a good experience on a different agonist though. Mirapex didn't work out for me. You just have to be aware of the side effects and be attentive.

[Nikosmom in reply to Jlloy5]

Thanks

[aquario]

Tried Neupro a few years ago. Seemed to work fine, and then, perhaps coincidentally, I started developing restless leg. Curiously, it's considered a treatment for restless leg. Stopped the Neupro and now use ropinirole. Works quite well. But as with all treatments for pd, it's hard to figure out what's effective and what's not.

[Nikosmom in reply to aquario]

How long did you take it and what dosages? Thanks

[Irwinmudgee]

Hi Nikosmom,

I was diagnosed with PD five years ago. About 2 years ago I was floundering with constant dizzy spells and diminishing 'on' periods and increasing 'off' periods. My neurologist added a Neupro 1X4 mg/24h patch per day to my drug regime of 4 tabs Stalevo 200/50/200 per day and 1 X 1mg Azilect per day. Dizzy spells immediately ceased and 'on' periods extended. But as is the way with this disease the efficacy of the patches has diminished over time and we've been upping the dose periodically to currently 1X8mg/24h.I use lanolin cream to good effect to ease skin irritation.

I"ve been lucky in the addiction department. Mine is chocolate ice-cream. One cone a day. A small price that I'm willing to pay.

[Nikosmom in reply to Irwinmudgee]

Thanks. After a second opinion I decided not to use the patch. The Sinemet ER is doing a good enough job. Enjoy your ice cream.