Neupro: Just wondering if anyone was ever... - PSP Association

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Neupro

kryste profile image
10 Replies

Just wondering if anyone was ever put on Neupro Patch and if so how well did it work

Hugs Kryste

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kryste profile image
kryste
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10 Replies
Heady profile image
Heady

Never heard of it Kryste, Sorry!

Lots of love

Heady

Nanny857 profile image
Nanny857

Sorry Kryste, Can't help. Nanny857

Kevin_1 profile image
Kevin_1

It's used for restless leg syndrome and Parkinson's disease.

I am sure you can google the formal medication side, but here is a link of people with Parkinson's responding to using it.

drugs.com/comments/rotigoti...

Hope it helps.

kryste profile image
kryste in reply toKevin_1

Its for my neighbor who has Parkinson

Thank you

I tried it with my father, that is under direction of consultant, and we found that the results were very good indeed. I have heard that some people do get irritation of the skin with the patches but my dad tolerated it very well indeed. There is a very specific way that the drug is built up in strength and you must follow the instructions strictly. Unfortunately the NHS team made a complete pigs ear of it with us with a mix up of funding between the GP and the hospital trust and various people going on holiday and on top of this no one could recognise that dad had PSP that they stopped the treatment. It was a scandal what actually happened to us. The last consultant we saw who actually very timidly suggested PSP six months before dad died, when I sent him the report from the brain bank in Queen Square in London wrote back and agreed with me that Neupro certainly would have helped. Actually it did make an amazing improvement but they did not allow us to continue with it long enough to reach the right strength for him. How long the improvement would have lasted, I cannot say, but we were desperate by that time and what improvement he had for the short time he was allowed the drug was fantastic.

kryste profile image
kryste in reply to

Thank You

Neupro is also known as Rotigotene. It is made by UBC Pharma Ltd. Tel no 01753534655 and if you ring them up they are very helpful. Sorry message in two bits, I got up to dig out the contact info for you and when I picked up to message again I pressed wrong place!! If you are out of UK, it is +44 (0)1753534655. Neupro is a dopamine agonist drug type which stimulates a certain type of cells that bind with dopamine receptors in the brain. I can only say it worked like a miracle for us but we were not allowed a full and proper trial under the NHS and as dad was too sick to travel and I could not find a consultant who would visit a nursing home we lost out. Dad died two and a half years ago. What an absolute nightmare we went through. I don't often write on here now as it just brings back awful memories but I had to tell you about Neupro. It does not suit everyone but for us it was a wonder drug. Perhaps the person who had no success with restless leg did not reach the right strength. Who knows, it is such a difficult disease to treat. Best wishes.

kryste profile image
kryste in reply to

Thank you its acually my neighbor I also take care of not my aunt who has PSP he has Parkinson and they are wanting him to try he is soposed to be scedualed for DBS surgery in Jan m we are in the US Reno, NV sorry about your loved on my prayers are with you

Hugs Kryste

notentitled profile image
notentitled

Have also never heard of Neupro but if wanting to use to treat restless leg I can tell you what helped my husband. His restless legs were so disturbing to him when awake, felt like things crawling on legs, tingling and when he slept his entire body would be jerking with his legs ending up hanging off the bed. He has sleep apnea and the sleep Dr said they found that low iron can be a cause for restless leg. He had a CBC and Ferritin level blood test which showed he was iron deficient. They recommended a series of iron infusions and it made a total difference. I would also be interested in learning exactly in what areas does Neupro help PSP patients. Good Luck.

I suffered from mild restless legs and the neuro-physiologist pointed out I was wheelchair bound and not using my legs enough.

I started using an exercise bike each day and it improved.

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