Neupro (Rotigotine transdermal patches) for Parkinson's disease

[Daisies22]

Hello,

Has anyone been successful in completely withdrawing Rotigotine patches and how did you achieve this? I am getting severe muscle stiffness as a withdrawal symptom. It also took me 26 months so far to go from 10 mg to just under 1mg per 24 hours Rotigotine total dose. However, the last 1 mg is proving challenging, not because I need it but because of the severe withdrawal effects.

I should mention that I have never benefited from this medication, paradoxically, I got worse when I was prescribed it.

Any advice would be greatly appreciated.

Thanks in advance.

[park_bear]

Stiffness can be a Parkinson's symptom. Are you taking other Parkinson's medication?

[Daisies22 in reply to park_bear]

Thanks for your quick response.Yes, I'm taking Madopar IR 100/25 seven times a day, and Madopar dispersible 50/12.5 in case of emergency (and also 2 x Madopar CR 100/25 at night).

I do realise that this is a lot of Madopar but this is the only way to counteract the negative effects of the Rotigotine patches. The effects of the Rotigotine are so extreme that if I have any Parkinson's symptoms they are completely obscured by them. This was the reason to start gradually reducing the Rotigotine dose 26 months ago. However, like I said, the last 1 mg proves very difficult to withdraw.

I would be grateful for any comments you might have.

Thank you again and Happy New Year!

[park_bear in reply to Daisies22]

Thank you for your detailed response. That pretty much shoots down idea that it could be Parkinson's symptoms. Dystonia can also result from too much levodopa. Is your dystonia at its worst first thing in the morning or later in the day?

Happy New Year back to you!

[Daisies22 in reply to park_bear]

I was not aware that levodopa could cause dystonia. My understanding was that if I had dystonia and it was L-dopa responsive then Madopar should help relax my muscles.To answer your question - for a very long time I've been trying to work out why I feel best at around 6 am when I'm low on both Madopar and Rotigotine but get progressively worse during the day, even though the concentration of L-dopa slightly increases with time.

The Rotigotine definitely makes my life a living hell (this will require a longer explanation and I don't want to take up too much of your time) and I've always felt that Madopar was making things slightly more bearable.

I will need to think about this as I'm not entirely sure how to reconcile both things.

Thanks again for your time and the information.

[park_bear in reply to Daisies22]

Levodopa -induced dystonia is not well-known but it has been mentioned in the medical literature. For some more information on this see my post here:

healthunlocked.com/cure-par...

I suggest as an experiment try reducing your madopar dosage a bit and see if that helps.

No need to convince me of the downside of dopamine agonists - i am well aware..

[Daisies22 in reply to park_bear]

Hello, just wanted to let you know that reducing the dose of the madopar I take did help more than I expected! For the last three years I was on 1100 mg per day, now reduced to 800 mg per day. I still feel quite a lot of dystonia which gets worse as the day progresses. Something is still puzzling me - every time I have to take Madopar or have already taken it I experience really serious cardiac events - high blood pressure and arrhythmia. I am on Madopar Immediate release so I have these events six times a day. They are so intense that I'm considering going to A&E. Do you have any idea what might be causing them?Apologies for the long message and thank you again for responding to my original message, I do appreciate it!

[park_bear in reply to Daisies22]

Hi Daisies,

There is never any need to apologize for a long post or comment. The ones that are difficult are the short vague comments when someone expects to be helped.

It sounds like your cardiac problems are occuring during the peak plasma level of the immediate release madopar. Six times a day is too frequently for the time release version, madopar HBS. All I can suggest is to try further reducing your individual doses and see if it helps with the cardiac problems and the dystonia.

[Daisies22 in reply to park_bear]

Hello Bear,

Thank you for your reply, it has been really helpful talking to you.

I was wondering if I could ask for your opinion once again.

I'm still struggling with the Dopamine agonist (Rotigotine) I was prescribed four years ago. I've gradually reduced its dose from 10mg to 0.85 mg per 24 hours but unfortunately I get too many withdrawal episodes every time I attempt to reduce the dose further. The UCB Pharma lists a number of withdrawal effects, including "severe muscle stiffness" but they don't mention how to manage it. www2.neupro.com/neupro-side...

I was wondering if you have ever experienced such a withdrawal symptom and if you know of a medication that could at least partially alleviate the muscle stiffness I experience as it leaves me bedridden for hours at a time which I find very distressing.

Thank you in advance for your time.

[park_bear in reply to Daisies22]

Hi Daisies,

The only thing I know that is directly applicable is optimizing your levodopa medication and we have already worked on that.

Here is a list of things that have generally helped my Parkinson's. Perhaps one or another will turn out to be useful:

• High-dose thiamine. Dosing instructions and other information at the links. Many people with Parkinson's have benefited from this treatment. Allow four months for full effect:

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. People tend to think Qigong is about doing various physical exercises but these are a means to an end. The purpose of Qigong is to tune in to and abide in Divine Love and you can do this even while lying motionless in bed. My story here: healthunlocked.com/cure-par...

In addition, exercise as best you can.

[Daisies22 in reply to park_bear]

Thank you for the information and apologies for my late reply. I was really unwell the last few days, I don't understand why the dopamine agonist is making me so ill if it is helping other Parkinson's patients. I also wish my Neurologist was as helpful to his patients as total strangers on this site are!

Thank you again.

[park_bear in reply to Daisies22]

Dopamine agonists are helping some other Parkinson's patients and are hurting others. The problem you are suffering from is known as dopamine agonist withdrawal syndrome. Your symptoms are atypical, but the chronicity and disability is not:

pubmed.ncbi.nlm.nih.gov/236...

"A subset of patients who taper a dopamine agonist, however, develop dopamine agonist withdrawal syndrome (DAWS), which has been defined as a severe, stereotyped cluster of physical and psychological symptoms that correlate with dopamine agonist withdrawal in a dose-dependent manner, cause clinically significant distress or social/occupational dysfunction, are refractory to levodopa and other dopaminergic medications, and cannot be accounted for by other clinical factors... While some patients have transient symptoms and make a full recovery, others have a protracted withdrawal syndrome lasting for months to years, and therefore may be unwilling or unable to discontinue DA therapy. .... At the current time, there are no known effective treatments for DAWS. For this reason, providers are urged to use dopamine agonists judiciously, warn patients about the risks of DAWS prior to the initiation of dopamine agonist therapy, and follow patients closely for withdrawal symptoms during dopamine agonist taper." [Emphasis added]

[Daisies22 in reply to park_bear]

Thanks for the link. I have a slightly older version of the paper news.weill.cornell.edu/news...

and am convinced that this is what I have but I'm finding it impossible to engage my Neurologist in a conversation about it. He even told me that I lived in an alternative universe! His view is that my symptoms are purely psychological, and in 14 months he has done absolutely nothing to improve my quality of life.

[park_bear in reply to Daisies22]

When you are able, fire that neuro. Do you have cooperative primary care physician? If so, that will suffice.

Also, when you are able, consider filing a complaint with the local medial board or even a malpractice suit, if he did not warn of potential adverse effects.

Hang in there! I do believe you will recover over time.

[Daisies22 in reply to park_bear]

Yes, I have a very good GP but it seems to me that sometimes even this is not enough. My GP wrote to Neurology on my behalf as things there seems to move at a "glacial pace". As a result Neurology became even more unhelpful and confrontational they were before.I am seriously considering complaining as the dopamine agonist was "sold" to me as a miracle medication. I don't feel that I made an informed decision. Three days after the first patch I was taken to Accident and Emergency as I had a really bad reaction to the medication. The Neuro on call that day just increased the dose from 6 to 8 mg and sent me home. My own Neurologist did not come to see me in A&E even though I spent a day there and she works in the same hospital within a walking distance from the A&E.

If I want to change hospital I have to move house and I feel this is not fair.

[park_bear in reply to Daisies22]

Serious adverse reactions to dopamine agonists are commonplace. At the rate they seem to be prescribing them you are unlikely to be the only one. The only explanation I can think of for these MDs to be heedlessly prescribing high doses and ignoring patient adverse effects is that they have been brainwashed by pharma propaganda.

Some links for how to register complaints with the UK NHS:

nhs.uk/using-the-nhs/about-...

gov.uk/government/publicati...

ombudsman.org.uk/

[jimmydook in reply to Daisies22]

Could you please explain what you mean by a living hell as I am having problems with this medication, I try to come off it and I feel awful, had no appointments with anyone for some years because of covid, it has effected my behavior and I am frustrated

[Daisies22 in reply to jimmydook]

Neupro is a dopamine agonist and it is supposed to improve your motor functions.Unfortunately, what this medication does to me is to almost completely paralyse me for hours at a time. I can't move even my fingers and on top of that it makes my whole body shake. The shaking is so bad that I need my partner to hold my arms and legs otherwise the frequency and the amplitude of shaking increase. All this happens every time when I replace an old patch with a fresh one. This paralysing effect and the shaking get milder when the patch starts to wear off. Taking madopar helps counteract the effects of the patch but this means that i have to increase the dose of madopar simply to be able to cope with the effects of this medication which I did not want in the first place.

I was kept on this medication for a year and a half when my Neurologist suddenly changed their mind and finally allowed me to try and reduce the dose I was on. I should say that I've been on every single dose starting at 6 mg per 24h up to 10 mg and then very gradually down from 10 mg to just under 1 mg patch, it took me 26 months to get to 1 mg. Removing the last 1 mg patch proves really difficult - regardless of how tiny the changes in dose of Rotigotine are the withdrawal symptoms are horrendous. That is why I said that it has been a living hell. Because of all this I am not only housebound but wheelchair bound. The withdrawal attacks are so sudden and horrendous that I cannot risk it to be outside so I'm confined to the house and garden, I'm missing hospital appointments, and can't always get to the pharmacy to collect my medication. My pulse rate and blood pressure fluctuate too. Luckily, I don't have mood swings and am okay psychologically.

The list is longer...

Good luck to you and keep in touch.

[park_bear in reply to jimmydook]

See my comment on dopamine agonist withdrawal syndrome above.

[Miranda24]

Good luck to you Daisies 22. I hope you find some help with the withdrawal symptoms.

[amykp]

Are you certain they are withdrawal symptoms and not just symptoms of PD that the neupro was actually treating? (While giving you other effects you didn't like)

My side effects of neupro (4mg tho, much lower) were nausea and itchy rash, and when I stopped it (cold turkey) the side effects stopped too.

I have some muscle stiffness too--I can't say the neupro helped, or hurt. But I don't think mine are nearly as bad as yours. I'm sorry you are going through this!

[Daisies22 in reply to amykp]

Hello and thank you for writing.Yes, I am absolutely certain that what I am experiencing is the effects of the Rotigotine patches. I have been on them for nearly four years and can say that, at least for me, dopamine agonists, and specifically Rotigotine are a nightmare to take and a living Hell to gradually reduce and stop using. The UCB Pharma's information sheet warns about some of the side effects of withdrawal, and extreme stiffness is one I have : www2.neupro.com/neupro-side...

In my experience the list of negative effects is a page long, and the higher the dose the stronger the effects are. Gradually reducing the dose of Rotigotine alleviated some of them but there was no dose I benefited from. The worst was the almost total and very sudden freeze up of my whole body. For hours I literally could not move a muscle and still need my husband to move my arms and legs as I get temporally paralysed.

There were also arrhythmia, high blood pressure and pulse rate, pain in the chest area and neck to mention a few. Taking Madopar helps a lot but this is just fundamentally wrong.

As my Neurologist could not explain why I get these symptoms I was eventually allowed to withdraw this medication.

I never had any cognitive problems (luckily).

I was wondering if anyone else has ever seen or experienced similar problems. My Neurologist told me that he has never had a case like mine before and I don't know if this is good news or bad.

However, this is only my experience and if this medication helps you you should not be discouraged to use it. Hope this helps.

[LeharLover62]

Hubby got very stiff when he reduced Neupro also. It was a symptom Neupro was treating. The nice thing about Neupro is that it is always on, whereas C/L is unsteady with peaks and valleys.

Why are you trying to stop it? What are your negative effects? Are they cognitive?

He eliminated and cycled through pretty much all Pd meds and just ended up back on Neupro because the even dosages and bypassing his digestive system works so well for him.

[Daisies22 in reply to LeharLover62]

Yes, "on paper" Neupro looks like the perfect drug delivery system. Unfortunately for me Neupro completely incapacitated me - I could not move at all for hours at a time. Not only that but also I was (still am) having episodes when my whole body shakes, and it is unbearable to watch, not to mention going through it up to 4-5 times a day. I would understand it if it was having a marginal effect or no effect on me. However, its effects are the polar opposite of the expected ones.Anti-Parkinson's medication affects us differently, so if your husband is feeling better on it then he should stay on it.

P. S. No, I didn't have any cognitive problems. It is the motor functions that are affected by it. There are many other effects which are all dose-dependent, the list is very long. I guess it might be that I cannot tolerate well dopamine agonists in general.

All the best to you and your husband!

[6daniparky]

Mio marito utilizzava il cerotto da 6 mg. Gli dava irritazione cutanea molto forte e dopo un'orticaria lo ha sospeso praticamente di colpo. Ha iniziato contemporaneamente Ongentys in aggiunta a Xadago e Madopar che prendeva già. Inizialmente era molto rigido ma ora va meglio. Per lui Neupro non è stato un buon amico.

[Tiggerboy7000]

I had a very similar problem with the final mgs of rotigotine about 3 years ago and despite advice to the contrary I resorted to cutting the2mg patches into ever reducing slithers over a month or more until I eventually felt comfortable.

[Daisies22 in reply to Tiggerboy7000]

Thanks for writing.Do you mind me asking if you had any serious withdrawal symptoms e.g. extreme muscle stiffness? By this I mean muscle stiffness which did not allow you to make any voluntary movements for hours? It is this bad for me, every day.

I'm just trying to understand why my reaction to Rotigotine is so extreme.

Thank you in advance.

[Tiggerboy7000 in reply to Daisies22]

As I recall I mainly experienced, wrestless legs and cramps.

[Sydney75]

My HWP has had little success in tapering off 1.3 mg of Neupro (cut 4mg) patch. We have not tried lately. MD said it is ok to cut patch. I would taper to .5. He gets terrible leg jerks when he forgets to wear a patch. Look into RLS (restless legs) forum on this site, I believe it has been discussed with other meds used in transition off.

He experienced pain with his leg jerks, so is it bit different than traditional RLS.

[Daisies22 in reply to Sydney75]

Hello and thanks for replying.I am currently on 0.75 mg Rotigotine, the highest dose I've been on is 10 mg. It takes incredible long time to taper this particular dopamine agonist as I get horrendous withdrawal symptoms e.g. whole-body shaking, high pulse rate and blood pressure, whole-body paralysis for hours at a time.

I have never experienced any benefit from the patch, exactly the opposite, my Neurologist agreed that it is hurting me so it has to be complety withdrawn.

I have never been diagnosed with RLS, it was prescribed to me for treatment of Parkinson's disease symptoms.

Hope your husband finds a medication which alleviates his symptoms.

Good luck.