I have been on Neupro for four weeks now (1mg then 2mg). It is hard for me to assess how well it is working because my main issue is PLMS ie when I am asleep! I do believe it is reducing the leg movements as I am no longer having these when awake and have much less cramping in my calves in the morning. It hasn't reduced the leg pain I experience during the night but taking codeine is helping with this.
However, my sleep remains disturbed and unrefreshing. So I don't feel any better as I continue to be sleepy and fatigued during the day. But I guess this could be a side effect of Neupro? In which case there is no point taking it. I am finding it really hard to work out what is the condition, what is side effects, and what is or isn't helping.
So any advice on what might help with the sleep side? I have in the past tried Zopiclone and Trazodone, both of which made me sleepy but didn't improve my sleep and made me groggy the next day.
Thanks Pippins. PLMS was diagnosed through a polysomnagraph which I assume would have identified sleep apnea, but I am seeing my consultant in a couple of days so will mention it as I do have lots of arousals.
It may be good to have another polysomnography to assess whether the medicines you take are hepful or not. Otherwise, what is the point in taling them? Amd with PLMS there is no other way.
I would make sense to have another test and I will suggest it to my consultant, although I don't hold out much hope given the state of the NHS and the lack of funding for the sleep clinic I attend. They seem to prefer to just keep throwing drugs at me in the hope that something will work.
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So.... now that my left arm has joined in with the involuntary leg movements whilst awake, I figure I am augmenting/rebounding rather than needing another add-in med. Not surprising given I also responded badly to ropinirole. Hoping my consultant (appt tomorrow) will now see sense and prescribe a strong but low dose opiate. Or even a benzo, just so I can try and get at least one good night's sleep!
I believe that PLMS is particularly difficult to treat; my understanding is that only dopamine agonists work for it, and unfortunately I don't have a lot to suggest but thought I'd mention that even though I tend to respond well to pramipexole (for rls - not plms), neupro didn't work well for me at all. My symptoms just didn't respond to it. In relation to zopiclone - or any other sleep inducing med - I have found that they only make everything much worse unless symptoms are controlled by a different med. It is -- if such were possible -- even worse to be dragged awake by rls/Plms when in a drug induced sleep than otherwise.
Thanks Id. It is useful to know neupro doesn't help everyone as I find it harder to come across bad experiences of neupro than other DAs - which suggests it is better but that might not be the case. I feel that with PLMS it is really, really hard to know if something is working because you can only judge on how tired you feel during the day. The Epworth sleepiness scale is, in my view, a poor tool to assess how well you are doing as feeling too tired to do anything yet not wanting to nap (because it makes you feel worse) is just as debilitating as needing to nap constantly.
It might be worth looking at the forum attached to rls.org - I think there may be more discussion on there about plms. If you google: 'bb rls org' it will be the first item to appear. You can join the forum or just browse anonymously. It is interesting to see the different approaches.
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Medication Question
What happens if you stop using the Neupro patch suddenly?
Anyone have experience of opiate side effects please?
