Getting off Pramipexole

[DreiTageWach]

Dear All,

first of all, I want to thank everyone for sharing their experiences here. This forum is such a valuable source of information. I am particularly grateful for the reports I stumbled upon by people who had been on dopamine agonists and then managed to get off them. I got really excited reading about how this brought down their symptoms to a baseline level that they could manage with much less or basically no medication. I realized that when I started getting treatment for RLS (about 9 years ago) my symptoms were significant, but also that I had managed to get by without medication. Every now and then I wasn't able to sleep at all for one night, but that wasn't the norm and most of the time I got about 6 hours of sleep. I feel like I'd rather deal with some nights like that occasionally rather than managing an ever-increasing baseline level of symptoms due to augmentation.

So I decided I give it a try and quit pramipexole (I was/am on 0.5mg). My tolerance for physical discomfort is naturally relatively high, so I went for this strategy: rapidly taper off to a very low dose and then quit cold turkey. This is how it went:

1st night: cut the dose in half. I had no problems falling asleep but kept waking up. Still I got a decent amount of sleep (maybe 3-4hrs)

2nd night: went down to 1/4 of the original dose (i.e. 0.125mg): Didn't get much sleep, but I was able to dose off every now and then for a few minutes. The next day I had symptoms during the day too (still perfectly tolerable though)

3rd night: no pramipexole anymore. Didn't sleep at all and wasn't able to dose off anymore. I watched TV paced up and down the room for most of the night. The time between aroung 3am and 6am was quite tough though. Eventually I wasn't able to sit and watch TV anymore but had to move constantly. Symptoms during the day were also harder to deal with too

4th night: again no pramipexole at all. Still unable to get any sleep at all. At 3am it turned into an absolute nightmare. The distinction between 'urge to move' and 'involuntary jolts of the body' became harder and harder to make. The bodily sensations I had were nothing I had experienced before. It typically started out as something that can still be described as an 'urge to move'. This urge then rapidly ramped up, causing jolts of arms and legs. I was still able to suppress them sometimes but this caused the sensation to ramp up further and to became an excruciating pain that travelled from the source somewhere in my extremities into the entire body while still ramping up and then finally 'exploding' in my upper body. Towards the end these waves travelled through my body in rapid succession (with a few seconds in between) and even walking up and down didn't help anymore. The fact that I had been awake for around 72 hours straight at that point didn't make it any easier. After a few hours my wife found be weeping on the sofa and at that point I gave up to cold-turkey strategy. I took about 0.125mg Pramipexole along with some Ketamine and was able to dose off for a few hours.

Moving forward I think i will have to keep taking small doses of Pramipexole and taper off more slowly. I will keep posting updates here if people are interested. The plan for tonight is to take cut the 0.125 mg in half and then see if I can manage. If not, I might take the rest so that I'm at 0.125mg again.

I am also super interested in hearing from other people if and how they managed to get off this stuff, how long it took for the symptoms to get down to the pre-augmentation base line, and how they manage their symptoms without!

[QyX]

I used potent opioids (Oxycodone) and Benzodiazepines (Clonazepam) because my symptoms were so bad. Not only was I augmenting heavily but also extra symptoms from the Pramipexole completely failing to improve my symptoms.

I was in the state of full body RLS like you just described for quite a while over and over again. Opioids are highly effective but most doctors only will prescribe them when there are no other options anymore. If you just take enough opioids, you can get rid of dopamine agonists instantly, especially when you are willing to take additional Benzodiazepines. Then it should be very easy and then after a week simply slowly reduce the dose of opioids to see what the baseline symptoms are.

But in your case: you can easily reduce the dose over a time for 7 to 14 days. But I also have to say that 2,5 mg Pramipexole per day is quite a significant dose. It never should have gotten that high. However you seem to be willing, disciplined and motivated which are the most important factors for getting something like this done. So again, it should be possible to drop Pramipexole within 10 days, I would say. But in the end it also wouldn't matter how long it takes as long as you make progress with reducing the dose. Just be aware: you will experience a lot more insomnia.

Just keep in mind that it is also important what to do after you stopped Pramipexol. It seems like that with the years RLS just gets worse and worse. For some people more, for some people less. So you might have more baseline symptoms then you currently expect or hope to have.

From the postings I read in the forum here, nobody with serious RLS can really live without any drugs. Personally my RLS is so bad that I simply would not be able to survive without treatment.

[stjohnh]

... awake for around 72 hours straight at that point didn't make it any easier. After a few hours my wife found be weeping on the sofa and at that point I gave up to cold-turkey strategy. I took about 0.125mg Pramipexole along with some Ketamine and was able to dose off for a few hours.

Moving forward I think i will have to keep taking small doses of Pramipexole and taper off more slowly. I will keep posting updates here if people are interested. The plan for tonight is to take cut the 0.125 mg in half and then see if I can manage. If not, I might take the rest so that I'm at 0.125mg again...

Hi DreiTageWach, Sounds like you have been browsing here for a while. Welcome, and if you don't already know, this forum is filled with lots of people who REALLY know how horrible this disease can be.

First, I'm sorry about the rough time you have had. However, it is typical of those going cold turkey to have about 2 nights with truly NO sleep, not even 5 minutes. It was the worst torture I've endured, more difficult than the post op pains I've had from some of my prior orthopedic surgeries.

Remember that newer treatment plans for mild-moderate RLS deemphasize pramipexole and other dopamine agonists and move gabapentin (and relatives Lyrica and Horizant), in addition to iron, to first line status, primarily due to the very high incidence of augmentation that eventually develops in most, but not all, long term users of pramipexole and other DAs.

If you decide to try again to get off the pramipexole, it will help some if you can take an opioid (codeine, norco, hydrocodone, etc) for a few days or a week. Still won't be easy, more like torture, but perhaps a bit better than the experience you had the last couple of nights.

What is your plan after you get off the pramipexole?

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do (ferritin test) to check for low iron only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

[Icantsleep]

I'm willing to bet that out of everyone on this board, I've got the most recent experience of mirapex withdrawal and elimination

Like you , I came down from .5 mg (.25mg x2 , taken 2-3 hours before bed and bedtime respectively)

It took about 10 days ,
I believe I cut both doses by .0625 every second night. (A quarter of a .25mg pill)
I then eliminated the 2-3 hours before bedtime dose and kept the bedtime dose for a few nights

I then attempted zero mirapex

This worked for one night , but I caved to the insanity and took .125mg the next 2 nights (both times the "insanity stopped within 5 minutes.)
This gave me desperately needed sleep , and this was PARAMOUNT for my mood AND lessened the intensity of the RLS during the final push
I have been off mirapex now for about 4.5 weeks .
I may or may not be at my baseline , but it's better than augmentation and my withdrawal RLS intensity

I'm unsure how much tramadol (a weak opiod) played a role in helping me
I think it's safe to say it was at least somewhat effective and valuable

.... I would recommend tapering the .125mg over a couple more days and at least finding some low grade opioid for a few days as well so you can SLEEP at least a bit
The more you sleep, the less severe the rls will be .

FWIW I also took clonazepam and vaped large amounts of high potency marijuana, but neither really did anything for the RLS

I wish you the best of luck

Let us know how things are going

[Icantsleep]

I should clarify that THC did very little for me during augmentation and withdrawal

When I initially chose THC over gabapentin as my next med to combine with mirapex, I experienced an absolute breakthrough

Perhaps score yourself some weed before scoring some pain meds
... might be easier to find in the next few hours and days

In my opinion if you havent had either in your system for a while , even a low grade low dose, it will really help you reduce your wild RLS/WED temporarily , and get you some brief sleep

[DreiTageWach]

But I also have to say that 2,5 mg Pramipexole per day is quite a significant dose. It never should have gotten that high.

Sorry, that was actually a typo, I was on 0.5 mg Pramipexole! Your response is very encouraging, I will continue to reduce the dose for sure.

What is your plan after you get off the pramipexole?

My plan for now is just to see what the symptoms are like once I'm past the withdrawal. Ideally I would like to manage the symptoms without medications. Regardless of the outcome, I will definitely try supplementing Iron and I will also look into IV iron treatments. I am also going to try a change in diet. My plan is to follow the Whole30 program for a month (my wife has done this before and can help me with it, that's why I'm going to try this specific diet).

I should clarify that THC did very little for me during augmentation and withdrawal

I use cannabis occasionally, but it doesn't help with the RLS symptoms at all. Quite to the contrary, I feel like they become worse after smoking weed. But maybe that changes once I'm off the Pramipexole. I feel like I respond differently to all sorts of things depending on whether the symptoms are due to DA withdrawal or just baseline RLS.

Today I went to see my doctor to ask for something that I can take to get over the withdrawal period. I knew the chances of getting a prescription for opioids were essentially zero and did not even ask for it explicitly. My doctor prescribed me some Gabapentin instead. I'm not sure wether I should take it though. From what I've heard, you have to take it regularly if you want to make sure its effective. But I really don't want to swap out one drug for another. Ideally I would like to have something I can take on demand every other night just to make it through the next one or two weeks. Would anyone of you recommend using Gabapentin this way? I also bought some Kratom, which I will definitely try out tonight.

Last night was ok by the way.I only took about 0.06mg Pramipexole and made it through the night. I did not sleep but the symptoms that kept me awake were tolerable!

[Icantsleep]

Well you did better than I did in one regard
I didn't sleep at all last night and this morning , and never made it to my doctor's appt
I dont think I really missed much other than iron discussions
Still waiting for a neurologist for the post mirapex plan ...
Also letting my DA withdrawal run its course before making another drastic decision regarding new meds .

I'm not sure how long it takes gabapentin (or kratom) to reach their full potential
I would imagine the kratom is much faster acting, but I'm no expert .

1 thing I do know is while my augmentation and withdrawal RLS symptoms are significantly less intense, I really cant fall asleep or stay asleep (even without any RLS present)
Tramadol , clonazepam and THC arent getting that job done right now , and I'm pretty darn tired and didnt feel very useful today .
I suppose it's still better than having wild DA withdrawal

One day at a time

[legsbestill]

I would be inclined to get serum ferritin levels checked prior to discontinuing pramipexole completely and if it is less than 100 (make sure that you get the actual figure - not just that you are 'normal') start a supplement. I would focus on making sure that iron levels are as high as possible. From recollection there is a study that suggests that a high serum ferritin helps somewhat with the dreadful symptoms experienced during dopamine agonist withdrawal.

The other thing to be watchful for is that lack of sleep can actually exacerbate rls (in a truly cruel irony). Coming off a dopamine agonist, it is likely that you will go 7 to 10 days with hardly any sleep. The lack of sleep in itself can set up a vicious circle. It might be necessary therefore to take a short stint on an opioid or kratom just to get some sleep to enable your system to reset itself. Even a few days on an opioid could make a difference. You can then discontinue the opioid and see how you get on. I foolishly did not prioritise either my iron levels or my sleep and suffered greatly exacerbated symptoms (hardly any sleep at all) for about 3 months after I took the last pramipexole. My sleep consultant refused to prescribe an opioid. It was only when I finally got a prescription for oxycontin from my GP that I started to sleep and then gradually my symptoms improved. For me, raising iron levels also helped with symptoms.

0.5mg is a fairly hefty dose of pramipexole and I think your replacement plan for discontinuation is probably more workable than the one you tried initially. Unfortunately, there is a suspicion amongst rls specialists that a prolonged period on dopamine agonists can permanently damage the dopamine receptors in some people. Hopefully this will not apply to you however and you will manage to return to your original symptom level but do be aware that for most sufferers it is possible to achieve a relatively normal life in spite of having to take medication for rls symptoms. Good luck. Keep posting.

[Polar Bear]

DreiTageWach
I have been using Ropinerole which is a sister drug to Pramipexole in that it is also a DA. After using it for over 15 years my daily dosage of 5mg was higher than the recommended daily max. It actually was 5 x times higher than what RLS experts now consider to be acceptable. It took me 6 months to very gradually get down to .75mg. To do this my GP helped by prescribing me Pregabalin (Lyrica) 200mg x 2 daily and increased my daily Codeine dosage. I have regularly spent 2 or 3 weeks and longer at a certain level before dropping by a further .25mg.
It has made the reduction to date much easier than I could ever have anticipated.

For the last month I have been using a 2gram dose of Kratom to replace a 3am dose of Ropinerole and Codeine. The Kratom does not promote sleep at this dosage but it does appear to ease the symptoms. I am afraid to go higher to seek sedation.
I tried a dose of Codeine 60mg at 3am (still dropping the .25mg Ropinerole) in place of the Kratom last night. It seemed to do the job.
No sleep but also no rls symptoms

I have no idea what my base line symptoms might be because when Initially I started Ropinerole (my first medication) all those years ago I was already suffering symptoms 24/7 in arms and legs.

Your experience on your fourth night of coming off your Pramipexole is what I have been trying to avoid. It must have been very frightening. I was very fearful when starting on the tapering journey.

At my present dose of .75mg it is possible that I could now go cold turkey but I prefer to continue to taper, such a coward. I will be sitting at this dose for at least a further month because i'm going on holiday in two weeks and don't want to 'rock the boat'.

Next week I have a GP appointment and I will ask her to help me further as I take the dosage lower. Will have with me RLS Foundation documentation regarding augmentation and withdrawal.
GP of course does not know about my support/back-up Kratom. i need help to manage for a time without the Kratom because when on holiday I don't want to try taking Kratom through the airport (Europe).

You ask how we might manage our symptoms without a DA - I would anticipate continuing with Codeine or possibly something stronger, and Pregabalin.
With Kratom as a helping hand behind the scenes.

I have rambled on here somewhat, trying to show how my journey has differed from yours.

Congratulations also to Icantsleep, well done.

Good luck.

[Polar Bear]

legsbestill - how much easier it would have been during those months had you been prescribed oxycontin sooner.

[ViewsAskew]

One thing to add here from someone who did it almost 15 years ago...it HAS improved over time. Some of us seem to get better right away. Some of us take months, and some of us take years. I am in the years category. What was 24/7 RLS slowly decreased to 20/7, then 18/7. Now? Am guessing more like 10 or 12 hours of the day. I started way below that, but I will take this.

Also, I wish I had better docs early on - I didn't get my first infusion until several years after I stopped pramipexole, even though mine was quite low and oral iron did not increase it. I have now had three of them - when my ferritin is high (and I do mean high - like around 300 or more), I can do two miraculous things. First, I can reduce my overall meds by 45-55%. The second is that I can take pramiepxole again, which reduces my opioids another 50% - so I am taking 25% of the opioids I had to take at one time.

I augmented in about a week. With the infusions, I have slowly increased taking pramipexole for 2 days in a row to 6 months in a row. Then I stop for 2 weeks. I took almost two years to slowly increase from 2 days to 4 days to 1 week and so on. Each time I would stop for awhile, then make it a bit longer. I think as long as the ferritin is over 100 (but just a guess), I can easily stay at 6 months. Since no other meds work for me, this has done more to make my life normal (less side effects overall, more consistency in what I take daily, better ability to get up in the morning and go to bed before 2 or 3 AM at the earliest, etc).

I just went to a conference for three days. I went to bed by 1 AM every night and midnight on one night; was up by 8 AM each morning; and overall didn't think I would die. I don't think I could do that every day of my life, but I couldn't have done that one day before.

[legsbestill]

Next week I have a GP appointment and I will ask her to help me further as I take the dosage lower. Will have with me RLS Foundation documentation regarding augmentation and withdrawal.

Betty, I wonder should you also bring the most recent study which finds a link between RLS and increased suicide rate. I suspect that finding this information enshrined in a study might have quite a impact on a GP.

[Polar Bear]

Legsbestill - I'll take a look at that.

Added.... I've bookmarked this to print out.
My previous but now departed GP was very amenable to such information. Unfortunately I'm not getting quite the same vibe from his replacement, even though she does so far try to be helpful. On one occasion when I offered information she looked up the computer and said she preferred to use the NHS guidelines/information. (National Health Service). To be fair she knew what augmentation was and that DAs were no longer first line treatment.

[DreiTageWach]

It's been a while since I opened this thread, so I thought I'd share the final outcome of my attempt to stop taking pramipexole.

Without any medication I wasn't able to sleep at all, so this clearly didn't work. Thanks to this forum I discovered Kratom though, and it works really well for me. I'm just glad I live in Canada where it is legal. My doctor also gave me neurontin, which doesn't do anything for me by itself. But it greatly enhances the effectiveness of Kratom.

I'm now substitute pramipexole with Kratom/Neurontin every couple of days and hope to be able to slowly reduce the pramipexole dose further as I keep doing this. I'm now down to 3x0.125mg tablets per night and feel much better!

[ViewsAskew]

YAY!

Please keep going! Stopping pramipexole truly was one of the hardest things I did...but it also was one of the best things I have ever done.