HELP!! Augmented on Pramipexole, put on Neupro Patch & seems to be getting worse

[thumperina50]

Hey guys!! So, I went to a Neurologist last week. Was on Pramipexole for about 15 years & started augmenting. Was up to .5mg 3-4 times daily. (Although the Neurologist said I could take up to 7.5mg daily 😳😳😳). So, he switched me over to Neupro Patches last week which ticked me off in the 1st place. I started on 4mg patches, already up to 6mg and am having symptoms still all day long and now have gone into my thighs and arms. I'm at a loss, frustrated, not sleeping hardly at all and don't know what to do. Any thoughts or suggestions would be greatly appreciated.

[Hidden]

In my opinion your neurologist is DANGEROUS..

7.5mg pramipexole is TEN times the maximum.dose of pramipexole for RLS.

6mg rotigotine (Neupro), is TWICE the maximum dose.

Nor should one med be stopped suddenly to be replaced by another unless it is an equivalent dose.

In addition, such a massive dose of neupro will probably make your augmentation worse.

If this were a UK neurologist I would report them to the medical authorities for misconduct.

My best suggestion to you is to see another doctor who is willing to prescribe a non dopamine agonist RLS medication.

Your primary care doctor should be able to do this,

I can't give you a link a link to the official US prescribing guidelines.

There is a link to the UK Official National Prescribing Guidance but it won't work outside the UK.

I have however cooied excerpts from the UK guidance for these two medicines.

Rotigotine

- Initial dose : rotigotine patch 1mg/24 hours.

- Titration : increase if needed by 1mg/24 hours weekly if required.

- Maximum recommended dose 3mg/24 hours.

Pramipexole

- Initial dose : 88 micrograms base (0.125mg salt)

- Maximum recommended dose 540 micrograms base (0.75mg salt).

The Reference for this is UK National Institute for Healh and Care Excellence 2020 "Clinical Knowledge Summary" for RLS.

I will send you another except on the guidance on how to treat Augmentation by private message.

Here's a link to an article written by a professor of neurology/RLS expert in the US.

Read especially the section on augmentation.

uptodate.com/contents/treat...

This may hopefully convince you, it sounds as if this neurolgist may not be open to the evidence.

I understand this may put you in a dilemma, but if I was you I would not do as this neurologists says.

[Madlegs1]

Give me patience!Not you, thumperina!

I really don't understand how that neurologist is allowed to practice.

Manerva has answered you fully, so I'll leave well alone.

If you are in USA, you would be well advised to look up a medical negligence lawyer.

Atrocious behaviour.

All the best for ,what is going to be a very tough few months. Keep strong.

[2islandboy in reply to Madlegs1]

Ditto to Manerva and Madlegs1. Their advice on augmentation from Pramipexole may have saved my life! I was on Pramipexole for 20 years. In the end, it was hell. I VERY SLOWLY tapered off Pramipexole over perhaps three months. Many nights of little or no sleep. I just accepted that that was part of my "recovery". I would get out of bed, listen to the BBC or audiobooks. I kept a log and some nights I would get up and wander around ten times a night. But I didn't fight or get angry about this. Instead, I just watched the process with amusement. Now the funny part, this is just what happened to me and may not work for anyone else - who knows. As my body stabilized, say 6 months after SLOWLY cutting back on Pramipexole, my RLS slowly diminished and has stopped???? Crazy?? I have also done a LOT of psychotherapy and made major stress/depression life changes. Pramipexole = POISON

[Pagan707]

Hi, the other posts are very experienced and informative. I can only offer my short experience with Buprenorphine patches. My bad if this is not the same as Neupro patches and ignore me. I have RLS, Fybromygelia, peripheral neuropathy, spinal issues and diabeties. I was on MST morphine tablets and swapped to patches a month ago. First eight days Rocky physically and emotionally but then calmed right down. Though prescribed for pain not specifically RLS. I have found it has had an amazing effect on reducing my RLS to the point it is bearable! I also take diazepam as a muscle relaxant and duluxotine to relieve nerve pain. It does not make me sleepy daytime but I’m an insomniac anyway and used to two hours a day sleep, plus I have been on strong meds a long time. Just thought I’d share my journey. I hope you find something else to help you and get appropriate meds. I know how much RLS can take over your life even if some Drs don’t understand. Good luck.