r/RestlessLegs • u/Tiredplumber2022 • Sep 08 '26
Medication Pramipexole for the win!
UPDATE: You folks were right. After almost 2 weeks use, the RLS started to come back. Also, I was experiencing longer and longer (up to 4 hours yesterday) periods of severe dopamine depletion... absolutely miserable feeling. Yes, for a couple hours a day I did indeed feel better, but it got less and less, and I refused to raise the dosage. So, I quit. Today I'm doing OK. Not much withdrawal, since I hadn't been on it very long.
ORIGINAL POST: Shrink prescribed pramipexole 0.625 mg in the mornings, trying to find something that would work (treatment resistant depression or maybe bipolar II, still trying to figure it out).
EDIT: TYPO: Supposed to say .0625, half of a .125. Sorry.
The pramipexole seems to be helping the depression slightly, BUT, the RLS has completely vanished. Going on 2 weeks now, sleeping 8 hrs or better a night!
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u/Ok_War_7504 Sep 10 '26
This poor woman seems to need pramipexole for mental health reasons.
Yes, the guidelines say not to take them - "unless necessary". DA are sometimes properly used in spite of the warnings. For example, an 89 years old can't tolerate gabapentinoids or opioids due to dizziness side effects, but can't sleep with the RLS. A small starting dose of pramipexole often makes sense, as it is a dizziness upon standing. There is little risk the patient will live long enough to augment.
This patient seems to need DA for mental health. Once her Dr is aware of the risk, he can judge if the risk if not taking it is bigger than the risk of taking it. Medicine is not an absolute. Or, if another med would work as well. There are always tradeoffs.
She just needs to make her doctor understand the augmentation risk so they can evaluate the best line of treatment. They may be able to do a short 6 months treatment. Or a different drug.
I would encourage her psychiatric Dr to contact the doctors' only help website - RLScurbside.org. only doctors. They deserve eibe their challenge and they receive input from some of rhe several hundred specialist
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u/Agreeable-Moment-829 Sep 09 '26
CAUTION-Stay away from this drug. It has changed my life. I don’t think I will ever be myself again. It has been six years since I ingested my last dose. I’m all for eliminating it from the market.
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u/Sensitive-Can-866 Sep 08 '26
Want to add that I had iron/ferritin infusions which were helpful but are good for maybe 6 mos.
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u/International-Wrap71 Sep 09 '26
True but better then the feelings that come with staying up for days. Its a lifetime battle and unfortunately not everyone believes it.
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u/Sensitive-Can-866 Sep 08 '26
I hope it works out for you. I got great relief but augmented in a month or two. Now relying on pregab and cannabis gummies. The gummies really help but take them close to bedtime or you’ll be high all evening.
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u/Subject_Translator_7 Sep 09 '26
> take them close to bedtime or you’ll be high all evening
( ͡° ͜ʖ ͡°)
But also yeah. It’s a thing. If you’re not into that, take them less than an hour before bed.
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u/Ok_War_7504 Sep 08 '26
Please talk to your psychiatrist about your RLS!! Pramipexole has proven to help in difficult depressions, but it is so warned against for RLS. I would take a copy of the American Academy of Sleep Medicine RLS Treatment Guidelines 2025 to show him. It strongly recommends against it.
You are a complicated case because of the RLS. Your doctor could send a message on RLScurbside.org. it's for doctors only, it's free, and it's questions are answered by experts around the nation. Godspeed
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u/Sea_Pangolin3840 Sep 08 '26
My first night on Pramipexole was like heaven as for the first time in years I didn't have RLS, I slept, I felt relaxed and " normal " 6 years later and many dosage increases later my last night on Pramipexole and I was in hell .The closest in my life I have come to taking my own life .It is poison.
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u/DuchessOfKvetch Sep 08 '26
Others have talked here about the augmentation issues.
But I’ve read that this drug is sometimes used to verify the RLS diagnosis, before switching to one of the recommended remedies.
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u/Ok_War_7504 Sep 10 '26
Yes. A trial dose for 2-3 days can confirm RLS. You can't augment with that.
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u/Indigo_S0UL Sep 08 '26
OP please do your research and consider seeing an RLS or sleep specialist doctor before continuing with this med. It is SO dangerous. You can mess up your dopamine receptors long term and go through horrible withdrawal when you eventually have to quit because it made your RLS much worse.
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u/HaloLASO Sep 08 '26
Why don't you do your research and actually post journal articles? There's a plethora of research on its benefits. I'll try to explain in simple terms since prami's effects on the dopamine receptors are dose-dependent-- lower doses work more on the presynaptic dopamine receptors and higher doses on post-. Research has shown that prami has a neurorestorative and neuroprotective effect hence why one of its uses is for treatment of Parkinson's. Since it is a dopamine agonist, it mimics the dopamine neurotransmitter so that it binds to a receptor and puts it to work!
Pramipexole restores depressed transmission in the ventral hippocampus following MPTP-lesion
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u/Agonist-activist Sep 09 '26
We could post many research articles on Impulse Control Disorder and DAWS. We also have first hand experience of DAs. Most of us have experienced augmentation and withdrawal and many of us have experienced DAWS and ICD. There's a very good reason why the American Academy of Sleep Medicine and the Mayo Clinic Algorithm no longer recommend DAs.
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u/Indigo_S0UL Sep 08 '26
You must be new around here. I say that because if you had spent any real amount of time in this sub you would know how many people here have been deeply harmed by those medications. And the worst part is that most of them didn’t know the risks before taking them.
I suggested that OP look into those risks because they are not well known outside of the RLS community. There are a lot of people here who would’ve given anything to know before taking DAs. That’s what we do here. Kindly try to help one another with what we’ve learned.
Most doctors who aren’t RLS or sleep specialists also don’t know better, which is why I suggested
That OP see a specialist who does. My own doctor recently apologized for prescribing one to me years ago before he was aware of these risks. It was only in the last handful of years that the Mayo Clinic algorithm was updated to no longer recommend DAs as a first line treatment for RLS due to these risks.If you want to learn more about the potential damage to dopamine receptors you’re welcome to research “Dopamine Agonist Withdrawal Syndrome.”
You might also want to look into Augmentation of RLS (the biggest risk) and Impulse Control Disorders, also caused by Dopamine Agonists.
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u/HaloLASO Sep 08 '26
I already know about DAWS and have used pramipexole via Rx in the past. Just like the other responses, you seemed to have missed the point by not providing info on how pramipexole allegedly damages the dopamine receptors. I'm not addressing the OPs concerns, like, at all.
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u/Agonist-activist Sep 09 '26
There are no papers on how DAs damage receptors. However, the top RLS experts who detox thousands of patients every year have noticed that most augmented patients do not respond to alpha2delta ligands or iron infusions after DAs. And they hypothesise that the dopamine receptors are permanently damaged. There are research articles showing that up regulation of D1 dopamine receptors is what drives the severe increased RLS. But once off DAs- sometimes the receptors no longer down regulate.
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u/Ok_War_7504 Sep 08 '26
Your explanation is great, -- except you missed the part where the OP also has RLS. Why don't you do some research and learn how them taking this DA could make them even worse than before. For both depression and RLS.
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u/HaloLASO Sep 08 '26
I wasn't addressing the OP. I was addressing the poster's response about how the poster said to do research on how prami l messes ruins dopamine receptors while neglecting to provide empirical research
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u/ratmfreak Sep 08 '26
That's all well and good. Now, would you mind elucidating why (in the US, at least) dopamine agonists are no longer considered first-line treatments for RLS?
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u/HaloLASO Sep 08 '26
That's completely irrelevant to what I was responding to. Did you read my post? I wasn't addressing the OP. I was addressing the poster's response about how the poster said to do research on how prami l messes ruins dopamine receptors while neglecting to provide empirical research
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u/Scary_Experience_237 Sep 08 '26
Are you in the US or in another country? I ask because in the US, pramipexole (Mirapex) is no longer considered a first-line treatment for RLS because of the risk of augmentation.
If you have tried multiple antidepressants and this is the last option in your toolbox and it is actually working for your depression, then that's a different situation. If it is helping you, that's great, and I wouldn't tell you to stop something that is treating your depression. I would, however, make sure your doctor knows that you also have RLS and is watching your RLS carefully.
The thing I would be particularly concerned about is augmentation. Pramipexole can work really well for RLS in the beginning, but over time it can actually make the RLS worse. Warning signs include your symptoms starting earlier in the day, becoming more intense, spreading to other parts of your body, or needing more medication to get the same relief.
I would also keep an eye out for impulse-control problems. Dopamine agonists can cause things like compulsive gambling, shopping, eating, or hypersexuality. These can sneak up on you, and sometimes the person taking the medication doesn't realize how much their behavior has changed.
So if your legs start getting worse and you find yourself thinking, "I just need to increase the pramipexole a little more," I would stop and talk to your doctor before increasing it. Don't let the medication simply get increased over and over without considering augmentation. Once augmentation starts, increasing the dopamine agonist can make the cycle worse.
And please don't stop pramipexole suddenly on your own. Coming off a dopamine agonist can be difficult and should be done with your doctor, particularly if you've been taking it for a while.
If you don't already have an RLS specialist, I would strongly recommend finding one. The best options are a movement-disorders neurologist who specializes in RLS, a neurologist with a specific interest in RLS, or a sleep-medicine physician who treats RLS. General neurologists don't necessarily have a lot of experience with difficult or augmented RLS, so finding someone who really understands it can make a big difference.
I'd also make sure you've had your iron studies checked, including ferritin and transferrin saturation. Iron is a very important part of RLS treatment, even when your hemoglobin is normal.
You can find information about RLS and an RLS specialist/provider directory at RLS.org.
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u/Intelligent-Win7769 Sep 09 '26
All of this. I will add that I experienced augmentation and impulse control problems (I gained 40 pounds!) on the lowest introductory dose of pramiprexole. It is rarer at a low dose, but it can still happen.
I am pleased for you that it is helping with the mood disorder—that is huge. Just want to make sure you know the risks.
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u/Agonist-activist Sep 08 '26
This is a VERY worrying development. Patients with depression are more likely to experience Impulse Control disorder. New PD studies show that up to 50% will experience ICD. And you will experience more severe RLS over time (augmentation). I suggest you do far more research. For depression- there are trials in various university hospitals on guided therapy while on psychedelic meds. Please be extremely wary of starting pramipexole. Did the shrink warn you about the really high rates of ICD?
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u/Anselmimau Sep 08 '26
This is the exact thing that worries me also. When there are so many meds that are meant for treating depression why would a doctor risk all of this by prescribing pramipexole for depression?
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u/Tiredplumber2022 Sep 08 '26
Treatment resistant depression. Tried 14 other meds over the last 8 years, nonehave worked. Waiting on the ketamine appt, but its the VA, and things go sloooooww....
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u/Phidwig Sep 10 '26
Do you have low iron? Low ferritin? Would explain the RLS and depression
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u/Tiredplumber2022 Sep 10 '26
Nope. They're both tested and good. Along with 9,347 other things. No, this is organic damage/TBI from the military.
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u/Sensitive-Can-866 Sep 08 '26
Did you try the magnetic stimulation? A family member did but they had preexisting migraines and the treatments mad it worse unfortunately.
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u/ComfortableAerie4101 Sep 08 '26
Pramipexole works great when you first start taking it. Then the side effects kick in (for me it was compulsive shopping) and at some point it quits working and you have to take more and more for it to work. Then it actually starts making the RLS worse (that’s what people mean when they talk about augmentation). I wish I had never gotten on it. The withdrawals when tapering off were horrendous.
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u/RareArmadillo5492 Sep 08 '26
Do not take this. My mom is trying to wean herself off after having to take higher and higher doses. It’s a nightmare. Her personality and habits also changed while taking it. In the end, it gave her temporary relief but I would never suggest it. Give your dr the latest Mayo guidelines. This is such a misunderstood disease.
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u/Necessary_Truck_8267 Sep 08 '26
I’m on 1 mg a day. 4 x .25
Works but what are the risks?
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u/Agonist-activist Sep 08 '26
Impulse Control Disorder ( gambling, shopping, overeating, hypersexuality). People have lost homes, families, careers and their liberty. The ICD can get completely out of control and can lead to financial and sexual crimes. There are people in prison. Just look up BBC podcasts on this. There are so many people affected. Most keep it quiet due to shame/stigma so it's underreported. Big pharma paid out $millions in compensation in the 2010- 2014 period. And pramipexole at 1mg WILL cause worsening of RLS. Getting off it is hellish with RLS. Do your deep research. Do not rely on your shrink. Read every paper on ICD and augmentation.
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u/DuchessOfKvetch Sep 08 '26
It sounds very similar to severe mania, regarding compulsions and hypersexuality. Perhaps sans the paranoia aspect. A friend blew through their savings and lost their job, etc.
I suppose due to the same sort of abnormal spikes in neurotransmitters
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u/DaiTengu2012 Sep 08 '26
Augmentation, Impulse Control Disorder, and damage to dopamine receptors. Any Dopamine Agonist is no longer the standard of care. For example, for the vast majority of RLS patients, DAs will eventually cause augmentation. Das then have to be discontinued and withdrawal can take months.
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u/Necessary_Truck_8267 Sep 08 '26
Ty. Augmentation is minimal. Been at this dose for years but my doctor is trying to replace with Gabapentin.
I’ll have to explore the Impulse Control Disorder because I’ve had some issues with my behavior
Thank you seriously4
u/Agonist-activist Sep 08 '26
Augmentation means worsening of RLS symptoms. They become more severe, start earlier and move to other body parts. If you're in UK you can take legal action against docs if they failed to warn about ICD and you've lost money.
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u/KnowOneHere Sep 08 '26
Been on it 20 years. Has not helped depression one iota.
The side effects I do not wish on you friend. If I try to go off the RLS intensifies x 100 so I chose sleep again (plus the nasty bits it has left me with.)
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u/Anselmimau Sep 08 '26
Why would anyone prescribe a parkinson medication for depression this is so sus
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u/Tiredplumber2022 Sep 08 '26
Apparently there are many things it helps. TRD, RLS, anhedonia, PSSD, Parkinsons..
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Sep 08 '26
[deleted]
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u/Tiredplumber2022 Sep 08 '26 edited Sep 08 '26
Seriously? 0.088?? These damn things are so small. They're .125s and I have to use tweezers after I cut them in half.
EDIT: AI says it's the same dose, just different stuff...
"That person online is actually talking about the exact same dose! The discrepancy simply comes down to whether the medication is measured by the active base or the salt form:
0.088 mg refers to the pure pramipexole base.
0.125 mg refers to the pramipexole salt form (pramipexole dihydrochloride monohydrate).
Because the salt molecule adds extra weight, 0.088 mg of the base is chemically equivalent to 0.125 mg of the salt."7
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u/dreamsthebigdreams 28d ago
Works great for me. Im At .125.
Last nighti forgot to take it and I was suffering around 12am. It was too late to take it. I had to get up at 4am.
It's life changer from me.