Need to stop my Pramipexole

[FloridaRN]

Hi everyone,

I desperately need to come off my Pramipexole as I'm suffering severe augmentation.

Could anyone please offer me any advice on whom to conact or what pro active steps I should take to come off it? I live in Florida.

My quality of life is very poor. I don't socialise, or go out. I had to give up my job. I can't sit down for any longer than a few minutes as i constantly have to move my legs.

Brief synopsis:

Symptoms started in 1990 when I was pregnant

RLS diagnosed around 2010 by GP then by specialist. Commenced 1 x 0.125mg pramipexole per day and advised to increase to 4 x 0.125mg daily, if required.

Symptoms over the past 5 years have drastically escalated. I have to take my first tablet around 10 30am now. I now take 4 or 5 pramipexole per day. I manage on about 2 or 3 hours of sleep.

Received an iron ferritin IV infusion in 2020 which didn't improve my symptoms.

Any advice much appreciated.

Thank you.

[SueJohnson]

To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[FloridaRN in reply to SueJohnson]

Thanks so very much, Sue. I'm very grateful for your advice.

I currently take 4 or 5 x 0 125mg of Pramipexole daily. Could you give me an idea of how long you feel it would take me to get off the Dopamine Agonist and on to a new med? Im trying to arrange my life around this monumental task and I want to make sure I don't have anything to deter me from succeeding.

Thanks again. 🙏

[SueJohnson in reply to FloridaRN]

A minimum of 8 to 10 weeks if you reduce by .125 every 2 weeks, but it could take longer. Especially as you approach the end it becomes harder and you will probably need to go slower or by a smaller amount. And then it will take a few weeks for your symptoms to settle down after you are off it. And then time to increase the gabapentin or pregabalin.

[Joolsg]

Welcome to the Group!

I agree with Sue on the reduction schedule but hopefully someone from Florida will post some info on a doctor willing to prescribe opioids to help the withdrawal symptoms.

Many of us have done it. It's very tough but possible.

The iron infusion would not improve symptoms while you're augmenting. The D1 receptors are too over stimulated and the infusion would only reduce symptoms slightly. However, once off Pramipexole, your raised ferritin levels might then really help.

[FloridaRN]

Hi Sue and Joolsg,

I'm so grateful for all your suggestions: I feel hopeful for the first time in years.

I hope you don't mind me asking another few questions, please:

Should I be taking opiods all though my Pramipexole reduction , or just towards the end of my journey (i.e. approximately the last 2 weeks on the last tablet)?

When should I expect the most severe withdrawl symptoms? I have to leave the country in 11 weeks time and go on a transatlantic overnight flight - do you feel that by that time ny symtoms, even if not better, wouldn't be worse than they are now (whilst I'm suffering augmentation)?

I need to start this Pramipexole detox asap as my quality of life is so bad. Being a nurse I appreciate that every person and situation is different and what works for one person might not work for another.

Thank you.

[Joolsg in reply to FloridaRN]

Definitely start now. You shouldn't need an opioid until the last stages of withdrawal. The week before you stop the last dose and the 2 weeks after.

Everyone reacts differently. My withdrawal was awful and lasted around 6 weeks but others start pregabalin weeks before the last Pramipexole dose and don't have a terrible time.

But the sooner you start, the sooner you will acheive stability. You could be through withdrawal by 11 December.

It can sometimes take weeks or months to find a combination of meds that work for you but start with pregabalin, gabapentin or Horizant as that's what is indicated in the Mayo Algorithm.

In the UK you can buy paracetamol with codeine at chemiss without prescription and that can help when the RLS plays up.

[FloridaRN in reply to Joolsg]

Thank you! I started this morning. Ive missed my first dose and just had my first of the day at 2pm (eatern US). Hopefully my next two will suffice. Great to know about the Solpadeine; would I take this if im having breakthrough symptoms whilst taking my new meds.

I still need to find a doctor, though. Do you know if most doctors would let folk start Pregablin before they have discontinued Pramipexole?

[SueJohnson in reply to FloridaRN]

There are a number of doctors listed on the rls.org site in Florida. rls.org/treatment/find-a-he... These are doctors that have been recommended by members. However the doctors might still recommend a dopamine agonist or might not prescribe an opioid since they are not screened for this and since the person who recommended them might have been happy with a dopamine agonist. The best way to find out is to ask them before making an appointment if they are familiar with the Mayo Clinic Updated Algorithm on RLS.

[FloridaRN in reply to SueJohnson]

Excellent, thank so much. Thank

I'll start looking asap.

[SueJohnson in reply to FloridaRN]

For your upcoming flight. Book your flight for early in the day and book an aisle seat so you can get up and walk around and preferably an emergency exit or bulkhead. Pack activities that serve as distractions. If you belong to the Restless Legs Syndrome Foundation, download the Restless Legs Syndrome Special Accommodations Card to give to the flight attendant. Otherwise be sure to talk to the flight attendant and explain that you will be walking a lot. Also, if you are not off the pramipexole by then and your symptoms under control, that would not be a good time to be reducing it. In fact you might want to increase it just for the flight.

[Carpediem37]

Try to get a Zoom appointment with Dr Michael Silber at Mayo Clinic in Minnesota. He understands this severe form of RLS and augmentation. My husband has suffered the same as you describe. Dr. Silber can help advise a pathway of care and work with your local prescribing physician to prescribe needed medication. For my husband, he was able to successfully wean to about 20% of the dose he was taking by using methadone. It's not been without some rocky days ,but has been the ONLY thing that enabled him to significantly reduce his pramipexole dose. His RLS is too severe to believe he'll ever be off pramipexole completely, but this has improved his quality of life dramatically. Good luck to you. As a spouse of a sufferer, my thoughts go out to you.

[Tobias10]

I am in the final stages of withdrawal from Mirapex after more than 20 years using it. I still have some breakthrus that are a bit rough and I often end up sleeping on my stomach on the living room floor but it is slowing improving. Mirapex is a nasty drug to come off of but it is even worse to stay on it so stick with it and it will slowly get better. My neurologist has me on 2mg of Methadone daily now 2-3 hours before bedtime and I have noticed I am no longer finding that I've clawed my arms while sleeping. I resisted going to Methadone for years and am now so glad that I made the decision to change over to it and get off of the Mirapex and Sinemet. I have some breakthus around 11 am and again around dinner time. I just got up from 4 hours of sleep and am ready to go back to bed for another attempt at sleep. Eventually I hope to actually feel normal again and just use the Methadone. Prayers to you as you transition!

[FloridaRN in reply to Tobias10]

Thanks for the advice, Tobias10. I'm so happy you are feeling somewhat better. May I ask how long your withdrawal has taken to date?

[Carpediem37]

I'll also say, my husband tried gabapentin and oxycodone at different times and found it ineffective to support pramipexole weaning. Just made him feel high and ill and dopey but unable to actually sit down or sleep. But he was on 2.5mg of pramipexole daily. Now with help of methadone, he's weaned down to .875mg daily

[Simkin]

coming off pramipexole, or any RLS drug, is a nightmare.

I simply dread the withdrawal symptoms. The only answer for me is to be put on another RLS drug as soon as possible.

[Hope61]

hi there !

Sorry you’re suffering You need to gradually decrease your dose until you are off. I had to take another medication to help with the withdrawal of Mirepex, it is not an easy thing to do but once you make it through it is so worth it. I am on Gabapentin now and I am 95% better In regard to my RLS. You need to take some time researching and reading in this forum. Your question as been asked many , many times. I don’t mean that to be snarky but reassuring the answer is here; your in the right place. Depending on where you live there are great doctors who can help too

[Sunshine458 in reply to Hope61]

How long have you been on Gabapentin and what dosage do you take?? I have just started taking Gabapentin 300mg sometime during the day most days and 300mg around 8:00-9:00pm. I have been on Ropinirole forever and I am down to cutting 0.5mg in half at night only right now!! This is a huge step for me I take 1mg Colonzapam at bedtime. I hope this Gabapentin helps this is such a crippling disease!! I have suffered with it as long as I can remember and I will be 73 in October!!

[Rls29]

Like you, I was on Pramipexole and reached augmentation. Increasing the dose made things much worse. I gradually reduced them, with some difficulty and Gabapentin was introduced. I'm glad to say im now off Pramipexole but it has taken a long time. I started Gabapentin on a dose of 100mg twice a day. I now take 900mg in the evening (you can get 300mg tablets) and this together with 20mg Amitriptyline has made a huge difference. I still have some 100mg Gabapentin in case I need to increase the dose further. Occasionally if my RLS wake me up I take an additional 100mg Gabapentin.

Hope this info helps. Hilary, UK

[FloridaRN in reply to Rls29]

Thanks, Hilary. I'm researching all my options. May I ask how long it took you to come off Pramipexole and how long it took you to find your current maintenance dosage of Gabapentin? Are you able to lead a 'normal' life now, i.e. not dictated by your RLS?

Happy you have found some quality of life now.

[Deesee in reply to Rls29]

Beware of amitriptyline as it exacerbates RLS. At least it did for me. Check the RLS foundation site for a list of medications that exacerbate RLS..

[FloridaRN in reply to Deesee]

Will do. Thank you!

[MrVimes]

I had been on Mirapex for 20 years and had reached the maximum dose (for the UK) of 5 x 0.088mg tablets per day and my symproms were getting worse. My doctor allowed me to experiment with other drugs. I found that by taking 225mg of pregabalin I was able to reduce my Mirapex dose to 3 tablets per day - it took me about 3 months to get to that stage. Each time I try reducing further my symptoms become unbearable, so I still take Mirapex. Right now I get 4 good nights out of 5 - so much better than it has been for many years. So my advice, try a combination of pramipexole with another drug and try and reduce the dose over a long period of time (months) rather than stop it all together.

[FloridaRN in reply to MrVimes]

Thank you so much! So happy you are much better.

[Nightwalker6]

oh I’m so sorry. That sounds very negligent by your drs. The reality is that RLS during pregnancy often resolves itself. They should never have put you on the prami. Especially not encouraging you to get up to 4 .125. The maximum recommended dose is .250. You need to find a specialist who knows what they are doing. If you feel you are able to start then I would very very slowly titrate down. Some try shaving the tablet to take less. The symptoms will get more intense. Beware of DAWS. I would recommend finding a specialist near you who is recommended by the RLS foundation. I believe Mark Buchfurer sees people out of state via video link.

[FloridaRN in reply to Nightwalker6]

Thank you so much. Ive just emailed him.

[Salisbury71]

I was in a very similar position and contacted my GP who advised me to reduce my Pramipexole dosage and then start taking Pregabalin. I am still in the process of determining the best dosage. I have just started taking 200mg at midday and 200mg at 6pm. But I still have to take half of a 0.18mg Pramipexole occasionally during the night because I still have the symptoms of RLS.

[FloridaRN]

How were your withdrawl symptoms? How long did it take to come off Pramipexole?

I hope you find a suitable dosage of Pregabalin. Good luck.