Pramipexole withdrawal

Use this forum to discuss any issues associated with Augmentation
homer001
Posts: 18
Joined: Sat Sep 12, 2020 9:38 am

Pramipexole withdrawal

Post by homer001 »

To all those brave souls that have gone before me withdrawing from pramipexole following augmentation I am seeking advice. My doctor wants me to taper off. 5mg that I am currently taking and I am wondering what is the most effective schedule. I am also taking 600mg of gabapentin and am concerned about the sedative effect at night when legs are bad. Should I stop that as well?

Any assistance would be much appreciated.

Dennis

Rustsmith
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Re: Pramipexole withdrawal

Post by Rustsmith »

Dennis, sorry that you are having to go through this.

If your doctor hasn't suggested a schedule to you, then you might think about something like this. From 0.5mg, you can drop to 0.25mg. When you do this, you will experience significant RLS and insomnia. The gabapentin is not strong enough to overcome this, only an opioid can cover the symptoms of pramipexole withdrawal. Once you have been at 0.25mg for a couple of days (and hopefully are not feeling too bad), then drop to 0.125mg for a few days. Your RLS will get worse. You can then stop the pramipexole, but you will not be able to sleep at all for about a week when you do this. I would suggest having a family member hide your pramipexole, because around day 4 you will be ready to give up and go back to it in order to get some sleep and your RLS will be the worst that you have ever experienced. Then around day 7, things will slowly start to improve. It could take about a month to return to whatever your untreated RLS is like and hopefully the gabapentin will start to be able to treat your symptoms.

All of this can be avoided if your doctor will prescribe an opioid. If you can get one, you can quickly drop from 0.5mg and then to 0.25mg and then stop over the course of a couple of days. After about a week off of pramipexole, you can then taper the opioid to see if you can get by with gabapentin alone or if you are like many of us who continue to use an opioid for our post-augmentation RLS.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Location: Palo Alto, California

Re: Pramipexole withdrawal

Post by stjohnh »

Steve has great advice. Getting of pramipexole is VERY unpleasant, but worth it. Get an opioid to help if possible.
Blessings,
Holland

homer001
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Joined: Sat Sep 12, 2020 9:38 am

Re: Pramipexole withdrawal

Post by homer001 »

Thanks guys unfortunately we have the same opioid paranoia in Australia that exists in the States think i will get some material together and have another crack at getting some methodone don't want to keep setting myself up to fail.

Dennis

Rustsmith
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Re: Pramipexole withdrawal

Post by Rustsmith »

Homer001, you might want to check out the paper "The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome". You can find it online. It was published by the Mayo Clinic and was written by the leading RLS experts in the US for the purpose of educating physicians that it is appropriate to use opioids to treat RLS post-augmentation. Many of us have printed off copies and provided it to your own doctors.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Pramipexole withdrawal

Post by stjohnh »

Kratom is ground leaf that has opioid properties. It is legal in many countries and can substitute for the milder narcotics in RLS users. Unfortunately, it is not legal in Australia. Any chance of getting a few from a friend who had surgery and has some left over pain meds?
Blessings,
Holland

homer001
Posts: 18
Joined: Sat Sep 12, 2020 9:38 am

Re: Pramipexole withdrawal

Post by homer001 »

Steve is there an optimum dose of methodone or is it a case of more is better?

Dennis

Rustsmith
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Re: Pramipexole withdrawal

Post by Rustsmith »

For RLS, a low dose is usually all that is necessary and more is not better. I only take 5mg (the lowest dose made). I know that others with RLS use 10mg and I understand that 80mg or more is common for those who use it for chronic pain or for recovery from addiction to street drugs.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

homer001
Posts: 18
Joined: Sat Sep 12, 2020 9:38 am

Re: Pramipexole withdrawal

Post by homer001 »

Thanks Steve

Dennis

Frunobulax
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Re: Pramipexole withdrawal

Post by Frunobulax »

homer001 wrote:
Mon Oct 12, 2020 9:08 am
To all those brave souls that have gone before me withdrawing from pramipexole following augmentation I am seeking advice. My doctor wants me to taper off. 5mg that I am currently taking and I am wondering what is the most effective schedule. I am also taking 600mg of gabapentin and am concerned about the sedative effect at night when legs are bad. Should I stop that as well?
Unfortunately opioids are the only drugs that can control RLS with augmentation, as others remarked. Iron infusions might help, and you can try the usual suspects (top of my personal list would be high-dose B12, folate, B6, magnesium, zinc, manganese).

My experience: I went off pramipexole cold turkey, from ~1mg a day. Had 2-3 really bad weeks: Felt sick, wild mood swings, digestion problems, hot/cold flashes, probably more that I don't remember. Then depressions which lasted for a year. As to my RLS, my doctors tried Gabapentin/Lyrica for a while, which did absolutely nothing even at ridiculously high doses (IIRC 1800mg Gabapentin and(!) 200mg Lyrica). My RLS was eventually back under (partial) control when I started on Tilidin and a few months later Oxycodone. (I had to keep increasing the Tilidin dosage, symptoms would be OK for a week or so after every increase but then come back. But when I switched to Oxycodone I managed to keep my dosage stable.)

But all this tells me one thing: It's absolutely crucial to get rid of pramipexole, IMO. The longer you take it, the more you'll augment and the harder it will be to get rid of it.

badnights
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Location: Northwest Territories, Canada

Re: Pramipexole withdrawal

Post by badnights »

homer001 wrote: I am also taking 600mg of gabapentin and am concerned about the sedative effect at night when legs are bad. Should I stop that as well?
I'm late here, but I don't think anyone answered you on this. The gabapentin shouldn't be a problem, not like an actual hypnotic would be. The gabapentin might be having a small benefit in reducing the nasty sensations, so it might actually help. That said, you might not even be able to tell if you're taking it or not.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Frunobulax
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Re: Pramipexole withdrawal

Post by Frunobulax »

badnights wrote:
Fri Nov 06, 2020 5:36 am
homer001 wrote: I am also taking 600mg of gabapentin and am concerned about the sedative effect at night when legs are bad. Should I stop that as well?
I'm late here, but I don't think anyone answered you on this. The gabapentin shouldn't be a problem, not like an actual hypnotic would be. The gabapentin might be having a small benefit in reducing the nasty sensations, so it might actually help. That said, you might not even be able to tell if you're taking it or not.
On a n=1 experiment, I should elaborate: Gabapentin worked somewhat in the very first night I took it. In the second night, RLS came back. After that, it would be a bit better for 1-2 days whenever the dosage was increased, and then apparently ceased to work. Therefore I don't think that it worked paradoxically, increasing RLS. The same happened with Lyrica, minimal relief after dosage increase but no real help. I did experience some nausea and vertigo, but no other side effect. I'm not sure what would have happened without these drugs (things could have been even worse), but with them my RLS was raging wild with typically only 1-2 hours sleep per night for over 2 months, until I finally found a doctor who put me on opioids.

But Gabapentin had another interesting effect: My symptoms moved to my arms, I got "restless arms" at times with my legs perfectly calm. Very weird.

homer001
Posts: 18
Joined: Sat Sep 12, 2020 9:38 am

Re: Pramipexole withdrawal

Post by homer001 »

Hi guys sorry for my absence and thanks for all your comments been in hospital on a different matter. Have been on 5 mg of methodone for three weeks and had my last dose of sifrol last night. Hardly any withdrawal symptoms at all an absolute blessing having access to the opiod. Now the bad news I fear that my gababapentil has also augmented on me anyone else out there with a similar issue with Gabapentin?

Any information welcome

badnights
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Re: Pramipexole withdrawal

Post by badnights »

homer001 wrote:
Thu Nov 26, 2020 5:37 am
Hi guys sorry for my absence and thanks for all your comments been in hospital on a different matter. Have been on 5 mg of methodone for three weeks and had my last dose of sifrol last night. Hardly any withdrawal symptoms at all an absolute blessing having access to the opiod. Now the bad news I fear that my gababapentil has also augmented on me anyone else out there with a similar issue with Gabapentin?
Congratulations on stopping the Sifrol. Your body has only just started the process of adjusting to the lack of Sifrol/pramipexole. It will take a few more days to weeks before your symptoms settle down. In other words, you are going to be in withdrawal, with worsened WED/RLS symptoms, for some more time. The amount of methadone you're taking may not be enough to cover these symptoms/

Gabapentin does not cause augmentation. You might even consider raising the gabapentin dose, but best would be a temporary increase in your methadone prescription.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

homer001
Posts: 18
Joined: Sat Sep 12, 2020 9:38 am

Re: Pramipexole withdrawal

Post by homer001 »

Thanks bad nights you were right continue to have issues two weeks after last dose of sifrol has anybody else experienced neuropathic type symptoms in their feet and legs post withdrawal? Is worse than the RLS

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