Neupro patch

[Lamadre]

Hi all, I have just been offered the Neupro patch to try to lessen off times and allow a longer sleep, less disturbed. Having looked at previous discussions here I am quite nervous about starting this patch. Is anyone using it successfully without any of the serious side effects? I am only 3 years in and (I think) over medicated at Sinemet 1.5 tabs every 3 hours and a CR overnight. I try to extend to 4 hours but struggle with a bit of a crash with this gap. Thanks.

[Balahanda]

I didn’t like them . I fallen down and cut myarm .because got freezing gait problems. It had increased the risk

[Lamadre in reply to Balahanda]

Thanks for your reply.

[park_bear]

Over a period of 5 years 50% of dopamine agonist users end up with impulse control disorder. Some seniors have lost their retirements due to the resulting compulsive gambling. It can also cause orthostatic hypertension.

What leads you to believe you're overmedicated? Have you not tried reducing your dosage of levodopa?

MDs do not seem to like prescribing CR during the day, but in a comparative study more users preferred the CR version. Details here: healthunlocked.com/cure-par...

[Lamadre in reply to park_bear]

Thank you for your input. There are a lot of warnings about these kind of behaviours which is why I was interested to hear about people using the patch successfully. I have tried to keep my levadopa to 4 hourly but the down time kicks in after 3 hours and can take an hour to disappear. 1 x 25mg + 1x12.5mg every 3 hours seems a lot of levadopa! I feel I’m getting increasingly dependent on it. I’m hoping the patch might even out the dosage during the day. Interesting about CR, the consultant I first saw was of the view it was less useful in the day as it took longer to kick in.

[park_bear in reply to Lamadre]

Yes it does take longer to kick in - I do not have a distinct on and off times. I set my dosage based on how I do over a 24-hour period.

Consider disease modifying interventions, in addition to exercise these have been helpful for me. Implement the thiamine and the cinnamon one at a time and see how one works before proceeding with the other:

• High-dose thiamine. Dosing instructions and other information at the links. Allow four months for full effect:

b1parkinsons.org/

healthunlocked.com/cure-par...

healthunlocked.com/cure-par....

facebook.com/groups/parkins...

A good source of thiamine HCl is here: vitacost.com/vitacost-vitam...

• Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...

• Qigong. My story here:

healthunlocked.com/cure-par...

[Nikosmom in reply to Lamadre]

i was prescribed neupro patch when I first started using PD meds but many people in this forum warned about side effects especially compulsive behaviors Dr Mischley, whoni consult and who is an expert on certain aspects of PD was definitely a NO

Many people in this forum are very knowledgeable and helpful I depend on Parkbear a lot He has never disappointed me .

I suggest you take a look at my program below in case it might help you

Good luck and let us know how you are getting by

😀Every 4 hours I take .C/ L 50-200 Extended Release (i want to go back to C/L 25/100 ER)

I also take half or whole Instant Release C/L 25-100 at the same time. I break into small pieces and take according to my symptoms or if I forget a pill

Sometimes even if. I s not at the beginning of new cycle,if i feel my med will be depleted soon i put a quarter instant release c/L 25-100 under my tongue and around 15 minutes i start feeling the effects , sometimes sooner depending on what I have eaten

😃 Some people are using the new inhaler for the same purpose but it has some serious side effects and it can be addictive. My method is considerably cheaper and effective but pay attention to your body constantly so you can determine how much instant realease you

[evenshoshan]

Hi Lamadre, I’ve been taking Neupro Patch 2mg/24h once a day at 18:00 for over a year now, for my RLS (Restless Leg Syndrome) feet pains, it works wonders for me. But I also do one hour of high intensity cardio & weights every early morning. I’m 71 yrs old and Datscan diagnosed with PD in 2018.

Hope this helps.

[Lamadre in reply to evenshoshan]

Thanks, helpful to hear your regime and that the patch is working for you. I do need to step up my exercise, timely reminder!!

[evenshoshan]

Hi again Lamadre. Just to fill in the gaps, apart from Neupro 2mg/24h, my daily meds are Sinemet 12.5mg/125mg (3 times a day), Tramadol 50mg early morning and noon) and Doliprane 500mg (Paracetamol) early morning and noon.

[LeharLover62]

Hubby’s always done best on Neupro. At first there was some nausea, which he treated with alka seltzer. After awhile that went away. It can have big advantages in even ing out the on time and off time swings. It’s also really nice later in the disease when swallowing pills is harder.

But I’m sure it’s not for everyone and they do say the risk of cognitive side effects is higher. He has serious cognitive issues at this point, but who knows whether that was going to happen anyway. I suspect so as he never responded very well to C/L.

[Lamadre in reply to LeharLover62]

Thanks for replying. Sorry to hear your hubby has cognitive issues, sending best wishes. I guess none of us knows what lies ahead.

[PD-CareGiver]

Hello Lamadre, one neurologist prescribed Neupro path for my husband. But our new neurologist that I like better mentioned that Neupro patch is in same category of levodopa and since she believes that he is already on high dose of sinemet (2 pills 25/100 every 2 and 1/2 hours) total of 10 and 3 sinemet CR at bed time) should not use Patch. She has prescribed Rytary. One Rytary and one sinemet every three hours. His issue is off time and freezing even with med every 2 and half hour. We are hoping that Rytary would help since it is a special type of slow release. It is expensive but what can you do!! The 10 year patent won't expire till anther 5 years so no generic. Shame on pharmaceutical companies. They make billions!

[Lamadre in reply to PD-CareGiver]

Thanks for sharing this info. I don’t freeze but have very noticeable tremors and feel like I have weights attached to me in off time, can’t do much till next dose kicks in. Totally agree, so many people could be helped with cheaper meds.

[Deirdrez]

I like my Neupro patch! It was the first thing I was put on. I now was taking 1.5 25/100 C/L with extra Lodosyn up to 5x a day and only getting 2-2.5 hrs of quality time. Without the Neupro I feel like my body is going to ‘snap and break’ with dystonia. I’ve tried different forms of CR which initially did help but eventually wore off. I have issues with gluten and they were trying to lessen that. C/L has never worked very good for me. I JUST had DBS surgery and experienced 10 days of total bliss after surgery due to residual effect. They turn the unit on mid Dec and they expect I am going to feel great! Currently have cut my Crexont use in half! DBS may be for you. Currently 10 years in from dx. Age now is 69. Hoping this gives me more quality time. Actually was quite an easy smooth 2 step operation each a week apart! I spent a lot of time worrying that I didnt need to!

[Lamadre in reply to Deirdrez]

Thank you for sharing your path through all this. Good to hear the patch works well for you. The DBS sounds very positive, hope you continue to do so well!

[Jess123dog]

Hi Lamadre, I would be very interested to hear how you go on, I am also in UK, Dx 1 year. I am on a similar regime to you, Madopar (like Sinemet) 12.5/50 every three hours, day and night. Also taking 1 Mucuna (Source Naturals) with each tablet. I would love to not have to keep waking up in the night. I am thinking about asking to try the patch when I see my Neuro in a couple of weeks.

I wonder if having a history of addiction would make it more risky? In my case I don't have, in 2012 I was on a large amount of Morphine and was able to come off it with no problems once the pain for the treatment I was having had gone. Also I have never smoked and I don't drink.

I would love to not have to be tied to taking Madopar every three hours and be able to have more time for exercise and be able to eat protein without it interfering with meds.

[Lamadre in reply to Jess123dog]

Hi, thanks for your reply. We do seem to be at a similar point! I have Sinemet CR for overnight and on a good night that might give me 4/5 hours sleep, together with a Clonazepam. However my bladder often decides to wake me up too!! With me poor sleep has a noticeable detrimental effect the next day, it's such a vicious circle really. I have MacuDopa tablets and would like to try these out too but one new thing at a time! I'll def let you know how I get on with the patch.

[LuckyLuke in reply to Jess123dog]

I don’t drink, smoke, or have coffee. I’m not someone who spends excessively, and I’ve never had any particular vices. It’s a constant overstimulation of dopamine that never lets up, running 24/7. Over time, the brain creates additional receptors to handle this overstimulation, which leads to a genuine dependency. The same can happen with levodopa, though to a lesser degree. For managing "off" periods, consult your neurologist and consider MAO-B or COMT inhibitors, as they don’t cause these effects. Dopamine agonists, however, should be avoided.

[BeedieBird]

I don't have experience with the patch but my body required ever increasing amounts of the immediate release c/l over time. I'm 4 years into PD. Immediate release c/l will give you ever increasing worse off times due to its short half life, jerking your brain up and sharply dropping. I switched to Rytary and added cdp choline, 300mg once a day to my diet, and I went from 1100 mg of c/l a day to an equivalent dose on Rytary of around 340 mg a day. I feel so much better. Daily exercise of some sort is hugely beneficial. I exercise with a Walk at Home YouTube program that gets my heart rate up and is very beneficial, 30 min in addition to other forms of exercise. But no need to overdo it with the exercise. Good luck to you .

[Lamadre in reply to BeedieBird]

Thanks for your reply, interesting you feel better on Rytary. I agree that exercise is key. I've recently moved house and now have to find some new classes but plenty on Youtube.

[PHILCAM]

Just one case - female, 88, only 85 lbs - but problems when moving from 2 mg patch to 4 mg patch - severe drowsiness, dizzy, loss of balance - and then there was the fall - sacrum and L1 - 10 days hospital and rehab - stopped after fall

Looking now at mucunna bean seed powder

[LuckyLuke]

I used it as my first medication three years after diagnosis. It worked well initially, but after five years, it caused impulse control issues, so I had to stop it. This happens to *everyone*—it's just a matter of time and dosage. The effects on impulse control can vary in severity. If you choose to use it, both you and your caregiver must be extremely vigilant. At the first signs of compulsive behavior, even minor ones (such as unnecessary spending, collecting items, reckless driving, or more severe issues like hypersexuality and gambling, which can damage relationships and finances), the medication must be discontinued immediately, regardless of its benefits. Stay cautious.

[Jess123dog in reply to LuckyLuke]

Was it difficult to come off, did you have to do it gradually or can one just stop?

[LuckyLuke in reply to Jess123dog]

It's hard. I tapered it off over a month, reducing it little by little. The neurologist adjusted my Madopar dosage. I experienced anxiety and panic attacks, but they gradually subsided. I then reduced the levodopa, returning to the same doses I was taking with Neupro.

[Jess123dog in reply to LuckyLuke]

Thanks

[realk in reply to LuckyLuke]

I can confirm from my own sad and bad experience...Neupro worked perfectly for me at the beginning but finally ruined my life.. already affected by PD. Nobody warned me about the side effects even my neurologist says is better don't read about side effects as its more likely to develop if you think about it!!!!..No warning at all..When I came back to him again it was already too late... compulsive behaviour,in my case presented as crypto and stocks trading ..lost all my savings, even went to debt an personal bankruptcy.... BIG warning should be put in BOLD on every box of Dopamine against!!!

[PKLC]

I am allergic to either the adhesive or the preservative in the formula. I creates a bright red/pink wel when I remove it. And it also creates an intense itching. These are not uncommon responses I've read about. It does help bridge the off times, and I've not experienced any other symptoms. If you don't like it or it doesn't work you will need to titrate off it, Hope that helps.

[amykp]

I used it, early on. It didn't do much for me, but no side effects either, except nausea in the first few weeks. I stopped it because I eventually became allergic to the adhesive--like PKLC, spots grew itchy. They mention that that's a possibility.

No big deal--I stopped it and itchy spots disappeared.

I don't think you need to be afraid. You can always try it starting with a low dose and if you don't like it, stop!

[Ksbhutani12]

Stay away from Neupro, it causes addictive behaviors which I have been a victim off as well as fellow Parkys who I know. I take Rytary which is more long lasting than sinemet. At night I take 1/2 tablet of seraquel which is used for schizophrenia and bipolar disorder, but has been repurposed for Parkinsons Sleep. I get about 6 1/2 to 7 hours of sleep at night