Advice on Pramipexole Withdrawal?

[Park4me]

I was as diagnosed with PD in 2012.. At that time I was put on Pramipexole and Rasagaline and several years later- Sinemet. When I transferred to a movement disorder specialist in 2016, I was on 1mg of Pramipexole- 5 times a day (No this is not a misprint) I did not know any different until I started this forum and read other’s posts. I had spoken to my doctor about wanting to wean off of it. In January I tried but when I was down to 1.5 my I got very depressed, agitated and yes, talked of suicide. I didn’t realize it was from the withdrawal of pramipexole. When I called the hospital and spoke with a nurse she told me to add one pill in and try again later. In April I had DBS surgery.. At the first appointment I was given my months device settings and also to wean off the rest of the pramipexole At that time we was on just one at bedtime that’s 1mg I was able to do that over a 3-4 week period with no problem I was very happy to be off of that drug About 2 weeks later I developed a chronic pain in my back I had been so happy because for years I had almost every day- leg pain and cramping The DBS surgery had taken that pain away However, it was replaced with the lower back pain I again became depressed and am wanting to relieve this pain on any way I can including taking my life The doctors - because there are notes of suicidal thoughts in my charts only prescribe Tylenol, or Naproxen I have told them I would be so happy if I could get rid of the pain! After an appointment to another doctor and she wanted to prescribe Naproxen, I decided to go back on the Pramipexole, At least if the pain goes away I will know that it was from the w/d? I don’t know but am at my wits end? Any advice?

[Joolsg]

I'm so sorry to hear of your pain and suffering.The dose of Pramipexole you were taking is for Parkinson's so that's not unusual and for Parkinson's you need dopamine as you don't produce it.

However, your Parkinson's has now been helped by Deep Brain Stimulation.

Pramipexole should be reduced VERY slowly as it can cause Dopamine Agonist Withdrawal Syndrome which is very real.

Suicidal thoughts are common.

Please speak to your Parkinson's neurologist urgently & explain your suicidal thoughts and that it's probably DAWS.

Your neurologist will have to give you something for the pain. I presume it's linked to your RLS rather than PARKINSON'S.

Medical cannabis might help and / or gabapentin or pregabalin or a low dose opioid.

Please speak to your Parkinson's team asap and demand a meds review. It sounds as though you weren't givenna safe, slow Withdrawal schedule and weren't given suitable meds cover to help you off Pramipexole.

As you're in the USA and this is a UK help site, you may find help groups near you via

rls.org.

Let us know how you get on.

Please speak to someone today. There is help available to stop the RLS pain.