I saw Dr Ray Chaudhuri at Kings Collage Hospital yesterday He has reccomended Neupro patch. Can anybody give me some advice

I have been on Pramipexole 6 tabs [0.088mg ] for the last 5 years and works except for the odd bad night with muscle spasm and shoulder and head jerking. I suffer from what i thought was secondry insomnia due to RLS and or sideffect to Pramipexole but Dr Chaudhuri thinks i should not have any sleep problems, Pramipexole helps people with RLS to sleep. It does but only for 1-2 hours after taking it. He therefore thinks i have a Primary sleep disorder and will refer me to a sleep specialist for sleep study.

He wants me to start Neupro patch which is the same as Pramipexole but given via patch with a continuous dose over a 24 hr period.

Is anybody else on Pramipexole and does it help you sleep for more then 1-2 hrs

Is anybody else on Neupro patch and does it help you sleep more at night?

Of course Dr Chaudhuri is a specilist and he knows what he is talking about and i will probably try the treatment he has suggested and go and see sleep specialist, but i would value your opinion and what experiences you have had.

bambisoloved

20 Replies

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  • Hi bambisoloved

    I'm on pramipexole and it makes me sleepy about an hour and a half after taking it. Then I usually sleep well - if I wake up I get back to sleep easily, so the effect lasts much longer than 1-2 hours for me. Recently I started waking up in the early morning with twitching legs so I have just increased the dose to 3 or 4 x 0.088mg.

  • I have been on pramipexole for 1 1/2 years and augmentation bad and I don't feel it helps; of course, maybe it would be worse. Last 1 1/2 months were hell. I have been on patch for 2 days and no RLS the last 2 nights. I hope it keeps up; that is my experience. i also had horrible twitching

  • I would say you are experiencing augmentation on the pramipexole, if it only works for 1-2 hrs at night. Pramipexole works on the movement part of the brain. We take it to keep our legs quiet at night so we can sleep, and yes it does make you sleepy too. Also alot of people suffer with insomnia who have RLS. But a sleep study will only show whether you have sleep apnea or PLMD, Periodic Limb Movement Disorder, as far as i know. I have used the Neupro Patch and it works for 24hrs, it did let me sleep all night when i was on it, i reached the 3mg patch which is the highest dose to take for RLS, then it stopped working, so i am now on pramipexole, taking 2 of the 0.0088mg so far, and they work for most of the night, i do wake up a couple of times with RLS but for the moment i do not want to increase the dose.

  • Only being wired up in a sleeplaboratory with other tests, including with a video can show if you have periodic limb movements as they are called. There is a shortage of sleep laboratories in the UK but I went as long ago as 2005. I was diagnosed there too after a previous diagnosis of RLS and subsequent diagnosis of RLS. They even know about faciculations etc in this setting. I have has RLS since 2001 and it has deteriorated with age and is a constant battle. I can't speak for a neuro patch but a rotigotine patch which is licensed did not work on me. I cannot tolerate dopamine agonists as some on here will know.

  • I have been on pramipexole for quite a few years and did have to increase the dose after about 3 years. I usually get to sleep ok but do have nights when I wake up and my legs are painful and twitching. I know I would not sleep at all if I did not take the meds. Perhaps it's time I tried something else.

  • Neupro Patch contains Rotigotine rather than Pramipexole. Rotigotine is just an alternative dopamine agonist. to Pramipexole.

    I take Pramipexole and have done for about 4 years. Used to take ordinary Pramipexole but now take the prolonged release version which means taking 1 tablet every 24 hours.

    I take this drug to combat Parkinson's disease rather than for RLS. But if I don't take Pramipexole I get RLS and badly enough to prevent sleep.

    Apart from feeling drowsy when first taking Pramipexole I also had (still get some) orthostatic hypotention (low blood pressure when standing). This means feeling a bit dizzy when I stand until the heart wakes up a bit and starts to work harder. This is slightly unpleasant but I am assured not dangerous. The greatest risk being that of falling while dizzy.

    I am not aware of any other side effect of Pramipexole for me.

    Apart from those occasions when troubled by something I now sleep more or less normally.

  • I am on the Neupro Patch and I have Parkinson's. It works well. Before you purchase Neupro go to site Neupro.com to get your discount card bringing price to $10. Patch just re released in July by FDA. Also expect to go from 2 to 4 to 6 to 8 mg. If you develop irritation from patch, clean irritated area with alcohol and body cream. Be sure to follow placement of patch in different area's of your body as shown on site.

  • For those using the Neupro Patch or thinking of using it for RLS. The highest dose for this med for RLS is only 3mg. For those who have Parkinson's Disease then the dose can go as high as is allowed which is 8mg.

    The Neupro Patch is available on the NHS if you are living in the UK on prescription.

  • Hi: well now I am confused. I am now on the patch for several months and notice that the side effects are not as bad as Requip. The leg pain is better but I am sleepy all the time.

    I also have to take a hot whirlpool before I go to sleep or I cant sleelp. Even when I do sleep it is not a restful sleep. Im just dragging around my life cause Im tired. I realize everyone is different; howeer, many of you said you dont have trouble sleeping. I have to take just a tad of Ambien to get any sleep at all. ggggggrrr.

    So, as I read above, it seems like the RLS is being controlled but the side effects of the meds are the problem. Any ideas????

  • Hi, alot of people suffer with side effects, even tho the RLS is kept quiet at night. I seem to be sensitive to ALL RLS meds. and have suffered badly from some of them with side effects. As your body gets used to the medication then supposedly the side effects wear off, but that doesnt happen to some people. The higher the dose, i take, i get the side effects come back. I managed to over come most of those when i was using the patch, i found it was the best RLS med for me, until it stopped working.

    If you are not sleeping and using the patch then if you have reached the 3mg patch, i guess you are starting to experience augmentation, thats when the med stops working. You say even if you do sleep its not a restful sleep, maybe you have PLMD aswell, where you are fast asleep but your legs and/or arms are flaying around, you dont know its happening, cause you are asleep. Not like RLS, where it wakes you up and stops you sleeping.....just a thought..

  • I get an avg of 3 0r 4 hrs of sleep, which is average for LOTS of RLSer's. :(

  • I have been on Pramiprexole o.088 and it works for me as long as I take it early enough. I also take Zimovane tablet which gets me off to sleep and I can have a good 5 or 6 hours with that at the moment.

  • And, you are not wearing your oatch when you go into the hot tub are you? just checking....;)

  • I mean "patch". :)

  • Did a little googling. The doctor mentioned here has been touting Neupro since before it was approved for Parkinson's, for the drug company. While Neupro soes help SOME people, it was aprioved for use in RLS. He is basically a paid spokesperson for the drug company. But, I am not saying his information is wrong at all. Lots of people are trying the patch in the UK, and starting to in the US, for RLS with varying degrees `of success.

  • Interesting. The patch was good for me as recomended by above consultant, but the skin irritation proved too much as I have dermatiitis.

  • Thank you for all your comments which have been informative and will help me to decide what to do. sorry for not responding sooner, i have been more depressed then usual and no energy to do anything.

    I have not started the patch yet, my GP [UK ] and i have been waiting for Dr Chaudhuri to send us his summary letter first. which actually came yesterday.

    I am not familiar with what i can do on this site but can i contact an indevidual forum member directly. If so can anybody tell me how to do it?

    bambisoloved

  • Just go up to msgs, click on that, click on new and type in the name of the person you wnat to send a msg to. :)

  • NEUROPATCH IS WORKING FOR ME. WHAT A BLESSING. AND YES I DO WEAR IT INTO THE HOT TUB BUT PUT IT UP HIGH SO IT DOESNT GET WET. I HAVE ALSO CUT BACK FROM WEARING IT 24/7 TO REDUCE THE SIDE EFFECTS. KEEPING ALL FINGERS AND TOES CROSSED, SO FAR SO GOOD. BUT I THINK THE IRON I TAKE AND THE REST OF MY NON GLUTON DIET...HELPS A LOT TOO. STILL HAVE TO TAKE THE AMBIEN, LOW DOSE TO SLEEP.. BUT ITS OK...CHOICES AND ACCEPTANCE.

  • I am now on pramipexole and have also tried neupro. None of them make me sleep thru the night. I always wake up around 4 times. I found out I have sleep apnea and have a cpap machine. I was unable to use it much due to the RLS. My dr. said I must use it, so I am trying to do better. Nothing is 100%. And believe me I have tried them all. One thing that works well is oxycodone. I also take that.

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