Does anyone have experience using Neupro 2mg patches?

[Sueloops]

I finally went to see a Movement Disorder Consultant at the hospital last month and she wants me to transfer from Pramipexole 0.88mg tablets to Rotigotine patches. My prescription has been changed and I now have the patches, but I am scared to use them after reading the info leaflet, and I am thinking of asking (insisting!) that I stay on Pramipexole. I can cope with the Prami and also find physical ways of alleviating the discomfort when the RLS starts - and I always know that my tablet kicks in 2-3 hours after taking it so the discomfort does not last. Rotigotine is also a dopamine agonist, so no change there. She just seems to think that the slow release of the drug will help me cope better, but I am wary of making the sudden change from one drug to another, and the possibility that I may lose consciousness or become very sick until my body gets used to Rotigotine. I have to look after my husband who has COPD and it's no good me being ill. I do not have severe RLS which lasts throughout the day and night, I just get it mainly on an evening or if I am sitting in a confined space like a train/plane/theatre so I don't need to make this (in my opinion) drastic change. Do you think I am right in making up my mind to tell my doctor and consultant that I will not wear the patches, or should I be biting the bullet and going ahead with them?

[Elffindoe]

I don't think there's any great advantage in switching from one dopamine agonist to another.

Some further thoughts.

I'm not sure what "cope better" means. Does this mean you're not coping now.

I also note that despite the pramipexole, it seems you still get symptoms. If that's the case then it's not really working. I wonder if the pramipexole has ever completely controlled your symptoms or if this is something that's developed.

From this either it's never really worked or it's now failing.

My best suggestion to you is to try and forget any fears you have about any of these drugs, but I would say you ought to wean off the pramipexole and any dopamine agonist.

It would be better to switch to an alpha 2 delta ligand, either pregabalin or gabapentin. These are less of a risk for augmentation and can also promote sleep and relieve anxiety.

IT may be that your anxiety about all of this is actually limiting any useful action you can take to cope with your RLS.

Hece I suggest you read up on this forum on how to wean off pramipexole and do NOT read anything else. Your reading appears to be simply feeding your anxiety. From reading your previous posts, I gather this is your main issue, anxiety.

[Sueloops in reply to Elffindoe]

Thank you - and thank you to everyone who gave me their experience and thoughts re the Neupro patches. Last weekend I re-read the booklet that came with the patches as I was determined to give them a go, but then I weighed up pros and cons and became very anxious and distressed about having to make the switch. So much so that I rang my GP on Monday morning and said I really didn't want to start using them and would rather stay on my low dose of Pramipexole which actually works for me 80% of the time. I was mainly bothered about the possibility of feeling sleepy during the daytime and having to avoid driving my car - which for me is essential. She was extremely understanding and prescribed Pramipexole again for me. I know most people on here are against it, but for now it is a case of "Better the devil you know than the devil you don't know". I will not ask for the dose to be increased so that I eradicate RLS altogether - I tried that once before, before I knew all about augmentation. So I am happy to stay on my present dose, work through the odd times when RLS becomes uncomfortable, avoid sitting in confined spaces for more than half an hour (train journeys/theatre), and know that each night I can go to bed with no symptoms and the knowledge that I will mostly get a full night's sleep.

[Elffindoe in reply to Sueloops]

Hi Sue, as I said before you would be best switching to an alpha 2 delta ligand.

However, I stil, consider that your worst issue is your anxiety about things, particularly about trying new things. I conclude this not just from this current post, but also from your previous posts.

This is what is preventing you from getting better control over your RLS.

I repeat my suggestion, do NOT read any leaflets or any online information about these things, the more you do, the greater your anxirty.

Hence the less likely you are to make any good choices.

For me your latest comment just further demonstrates this. This is not meant in any way as a criticism or judgement. I do clome across quite a few people who suffer health anxiety and often their anxiety prevents them from getting proper control over their RLS because they fail to accept recommendations out of fear of change or from reading TOO MUCH information.

[Hidden]

Hi Sue, based on a whole week’s worth of research, whereas Elfin has years, I would make the switch in a heartbeat. I would insist upon it. So I’m in total agreement with your doc. One night when you can’t sleep read thru my posts which describe that whole weeks worth of study. Let us know either way.

[Joolsg]

I'll bet the pramipexole worked brilliantly for the first few years and then very slowly you noticed you started to get it intensely in the evening or in confined spaces? That's exactly what happened to me and I thought it was just the RLS progressing. Eventually, I couldn't sit still in the car and the RLS became so intense I would want to scream. It moved to my arms, shoulders, back and face. Horrendous. I joined this site and the knowledgeable people advised me it was augmentation. I was still able to sleep but the intensity of the RLS in the day just increased. Did the movement doctor discuss augmentation with you and the alternative medications available for RLS/ Did she look at your blood test results and discuss the link with low serum ferritin? If not, you should ask.So, do you switch to the patch or reduce the prami?

If you stay on prami, the RLS will very, very likely get more and more intense, start earlier and move to other body parts. If you switch to the patch, it will probably resolve the daytime RLS in confined spaces for a while but inevitably, the same cycle will start up and you'll have to get off the patch. It's a case of when that happens, not if. As you look after your husband, the thought of going through severe augmentation in a year or 2 has to be considered.

If I were you, I'd read every possible article and post on augmentation and then decide whether to start the process of reducing the pramipexole very, very slowly now and switching to pregabalin.

Eitheror has an interesting theory that it may be slightly less traumatic to go through withdrawal from the Neupro patch than from the pramipexole but as we don't know anyone who has been through withdrawal from both, there's no one to ask.

I am so, so glad I got off dopamine agonists as I then realised how intense my RLS had become on them. Once they're completely out of your system, your RLS is still there, but it's 1000% less intense. Most people who have been through DA withdrawal will never go back on them.

In conclusion, read everything you can about augmentation and watch the videos on this site and the US site and carefully consider your next step.

[TheThirdDoctor]

I have been on Pramipexol, and it worked for me for about 5 years, but, as others have already noted, it is the same class of drug as the patches and there is little or no benefit in switching. I am on gabapentine, a heafty dose of it. I don’t get the daytime twitches and I sleep at night, but I have significantly lowered energy levels and while I do sleep I have to sleep alone as I still twitch quite actively through the night, which keeps my wife awake. There are other disadvantages of the alpha 2 delta ligands which affect me. Everyone seems to experience RLS differently, I suspect because it has a multiplicity of possible causes, so you just have to experiment. I know some folk here are on a mix of a2d ligands and dopamine agonists.

[lenpharleyd]

My experience with the patches are this: initially they were great, just like requip, until the dosages needed to be increased to the max and until augmentation took place, then it was pure torture! I have been on low dose methadone for a couple of years and it seems to help some without augmentation occurring. Hope this helps.