I suffer from RLS, probably because I took Venlafaxine for the last 29 years (this antidepressant is known to trigger and worsen RLS). My first RLS symptoms appeared around 2007. They remained mild until ~2015. Then they started to be strong enough to damage my sleep quality. I finally decided to consult a neurologist in 2018. He diagnosed me with a moderate form of RLS and put me on Pregabalin. I used this drug for a few months, but it was hard forme to tolerate the side effects (fatigue, memory loss, dizziness). Early 2019, my neurologist decided to replace Pregabalin with Pramipexol 0.18mg, a dopamin-agonist. The drug relieved me from my RLS symptoms at first, but after a year I had to increase the dose to 0.36mg. I also noticed that the symptoms were appearing earlier during the day, and this trend worsened with time, to the point that I couldn't go the cinema anymore. I stayed on Pramipexol until early 2022. My neurologist told me that the degradation of my symptoms was due to "augmentation", and he decided then to put me on Mirapexin 0.26mg, the extended-release form of Pramipexol, to fight this augmentation. It didn't help. Furthermore, I noticed that since I started to use a dopamin-agonist, I tended to have some depressive episodes, (maybe because of the interaction between Pramipexol and Venlafaxin?) In 2019, I also did something very stupid with my savings, and lost most of them. I learned afterwards that such episode can be related to the use of a DA. A posteriori, I think that it was a huge mistake to start taking these DAs...
In this context, I decided to "clean" myself, first from Venlafaxine, because it triggers/aggravates RLS, and then from Mirapexin, to get off this augmentation trap. From Feb to Aug 2023, I tapered off Venlafaxine gradually... and it was awfull. In fact, quitting Venlafaxine has been the worst experience of my life. A few weeks ago, I had a complete 'crash' of my nervous system, with as symptoms nausea, extreme anxiety, asthenia, chills, tremors, etc. I'm still in the midst of this crash. I know that it will get better with time, but it's really super-hard.
Anyway, I want to stick to my plan and I started to taper off Mirapexin a few days ago. I replaced my Mirapexin 0.26mg evening dose with a Pramipexol 0.18mg dose. Directly, RLS symptoms worsened. To be able to sleep, I now have to take Tradonal 0.5mg every night, else I could walk all night. My neurologist recommends me an aggressive tapering off: a few days on 0.09mg, and then nothing. But I'm afraid that my withdrawal symptoms would become so severe that my nervous system, which is already in pretty bad shape with the Venlafaxine withdrawal, would totally collapse.
Any tip on how to taper off Pramipexol would be welcome!
All the best,
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Mikatrap
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Welcome to the forum. You will find lots of help, support and understanding here. I'm sorry you are going through this.
You should have first been switched to .26 mg of pramipexole. and taken it twice a day. This is the equivalent to your .26 mg mirapexin. By reducing to .18 mg you have reduced from basically .52 mg daily to .18 mg daily. It's no wonder you are suffering and your doctor is wrong. Aggressive tapering is just making you suffer far more than you need to, and especially when you are suffering from stopping Venlafaxine.
The normal advice to come off pramipexole is to reduce by half of a .088 tablet 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 to increase your tramadol temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further. 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... 0025-6196(20)31489-0/fulltext
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
If you still need a antidepressant Trazodone and Wellbutrin are safe.
Thanks a lot for these valuable tips and information !
I had my ferritin level tested a few months ago and it was around 130. My transferrin saturation was also normal. Still, I did have an iron infusion last Friday while I was at the hospital. It should have brought my ferritin level beyond 200, or even more. I read a lot about the connection between RLS and low brain iron, and I convinced my neurologist to give this iron intravenous infusion a try, upon which he agreed.
Interesting to learn that 0.26mg extended release pramipexole is equivalent to two daily doses of 0.26mg direct release pramipexole! It explains why my RLS symptoms have gone so severe these last days after going from Mirapexin ER 0.26mg to Sifrol 0.18mg. Tonight i had the worst RLS attack of my life while watching TV. I ended up crying in the arms of my wife because it was just unbearable. Now I’m in my bed and I can’t sleep because of RLS, despite having taken a tramadol and a tradonal. That’s pure torture.
My guess that my RLS have become so severe not only because of my tapering off pramipexole, but also because of my quitting of Venlafaxine. These last 6 weeks, I have alternated nausea, depressive episodes, severe RLS, asthenia, and chills and tremors. My brain has totally lost its chemical equilibrium. I hope that things will get better once I will have quit pramipexole. It can’t get much worst anyway…
P.S. It is possible you may be able to reduce more quickly than I suggested at the beginning. If your symptoms settle after you gave reduced you can go to the next reduction.
I’ll switch to pramipexole 0.09 mg a week or two from now. And I’ll stop totally one or two weeks later. I know that’s gonna be hard, but there is no other option.
You mentioned that you had side effects on pregabalin that you couldn't live with. You might want to try gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. However you wouldn't want to start it to try it until you are within 3 weeks from coming off pramipexole, so I won't give you advice on how to take it until then, so post back when that time comes.
I tried gabapentin… for one dose. It gave me the worst and most vivid nightmare of my life. I woke up, only to find myself trapped again in the same nightmare. Pure horror. I think that, if required, I’ll go back to pregabalin after this pramipexole weaning. I prefer some mild memory loss to severe augmentation of my RLS symptoms.
I'm so sorry to hear of your struggles.SueJohnson has given you excellent advice.
Follow her reduction schedule. It is very difficult to get off Pramipexole.
Did your neurologist warn you of the high risk of gambling, compulsive spending and hyper sexuality on Pramipexole/mirapex?
There have been several legal cases against doctors for failing to warn of this common side effect.
As SueJohnson advises, full panel, morning, fasting blood tests should have been the FIRST step in your treatment. Raising serum ferritin above 100, preferably 200, reduces RLS for most patients.
Thanks for your reply. When he put me on pramipexole, my neurologist talked me about possible risk of OCD, but he told me that the doses used for RLS were too low for such side effects. He told me nothing about gambling or hyper sexuality.
To his credit, my neurologist did test my iron blood level (ferritin + transferrin saturation) at the beginning of my treatment. And he proposed me a DA only after having tried first pregabalin.
Your neurologist clearly doesn't see many RLS patients or know enough about the disease. There are SO many people with RLS on low doses of Pramipexole and Ropinirole who have lost homes, marriages, jobs from gambling, over spending, hyper sexuality. None had this issue before starting Pramipexole or Ropinirole.
I see that you had an iron infusion recently. Hopefully that will really reduce your symptoms. And once you're off Pramipexole, if your RLS doesn't settle, you could try a low dose opioid.
OMG - those are 2 very powerful drugs! Venlafaxine has a hideous discontinuation profile - very hard to get off of. I have an ex-girlfriend that was on it for postpartum depression - her baby is in college now! She tried to taper and get off it - horrible "depression returning" symptoms which is actually that discontinuation syndrome. You might try a "Prozac Bridge" - which essentially replaces the Venlafaxine with Prozac which is much easier to get off of. You will of course need some guidance from a medical professional to accomplish it. Sue is giving you her usual excellent advice on getting off the Prami! Hang tough - good luck!
Thanks for the tip. Venlafaxine is indeed a very nasty drug which is hyper hard to quit. But I did it, and I prefer to endure those painful withdrawal symptoms than to take another AD. I will start next week a psychotherapy to help me go through this. I also joined the online community survivingantidepressants.org, where I can find some useful advices and support.
Sounds like you're having a hard time with the RLS.I have been on Mirapexin 0.088mgs for about 6years now. It's effect is variable. I also take Phenergan 25mgs.(Anti - histamine) for sleep. Between the two meds. I drift in & out of sleep. I would love a good sleep but my Doctor is reluctant to prescribe a sleeping tab.
Welcome to the forum. You will find lots of help, support and understanding here.
Phenergan makes RLS worse for most. It is a sedating antihistamine. I suggest you wean off it slowly and insist your doctor prescribe a sleeping pill instead.
Up to 70% of people on Mirapexin suffer from augmentation which is when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
And the longer you are on it, the harder it will be to get off it which is what you will have to do if you suffer from augmentation. And it can be hell to do so. Put augmentation in the search box.
So be aware of the signs of augmentation.
Have you had your ferritin checked? (see above)
Also see above for things that make RLS worse for most and better for most.
Thanks for your message. Have you experienced some worsening of your RLS symptoms since you started pramipexole ? From what I read, such “augmentation” is basically unavoidable with dopamine agonist.
I reduced my DA by .25 every two weeks. I am still on .25 pramipexole, which I take one hour before bedtime. I have found that my diet is the main cause of my RLS. I take a probiotic nightly, vitamins prescribed by my naturopath, no gluten, and no alcohol. When I start augmentation, I will switch to gabapentin. A hot bath also relieve RLS symptoms.
Some update here. I’m now back on Mirapexin 0.26mg, and hospitalised because my tapering off has turned into a nightmare. My doctor here explained me that after having stopped taking Venlafaxine after 28 years under this drug, my nervous system was extremely fragile, and tapering off pramipexole just after was probably a mistake. They plan to rebalance my nervous system with a mix of benzo (to rest)and trazodone ( to decrease anxiety), and then to taper off pramipexole under a strategy still to TBD. I will also have some exams to assess the status of my dopaminargic, noradrenergic and serotoninergic systems, and other exams to check the state of my low back spines + nerves. Indeed, the doctors here find my RLS weird, in the sense that it does not seem to originate from my legs as it is for most RLS patients, but from my low back. Indeed, in case of crisis, it always starts with painful sensations in my low back, sometimes with kinds of electric discharges, and then it can affect one or two legs in a second phase.
Some update. As I’m hospitalised, it was decided to stop abruptly Mirapexin and to help me go through this with anxiolytic and myorelaxant. No more opioid either, as they are addictive. I just had my first DA-free night and it went well. I know that my NS is gonna crash soon and I brace for impact, but after having hitting the bottom, only way should be up.
Some update again. I should leave hospital at the end of the week. I'm now tappering off rivotril and valium (two benzo). Since I stopped totally Mirapexin extended release last friday (5 days ago) and be put on Valium and rivotril to help me with the weaning, I had zero RLS problem and slept like a baby the whole week. I had a few weep burst (because of DA withdrawal), a lot of tiredness, but no anxiety nor RLS. Now that I'm decreasing valium and rivotril, I'm gaining back some energy. I was examined by a neurochirugian that, after having done a scanner, thinks that most of my RLS is not "real" RLS but low back inflammation due to some mild damages to my spine due to my time at the army and some too extreme sport. The rest of my RLS should abate with time as I do not take Venlafaxine any more. All the doctors here agree that putting me on dopamine agonist was a terrible mistake from my neurologist. The plan now is to get out of the hospital this week-end, do some kinesitherapy, stretching, and osteopathy every week to reinforce my low back, some psychotherary to cope with the witdrawal effects of Venlafaxine and DA that can last for months, do not take ever again RLS medicines or antidepressants, and use meditation, sport, and fun activities to heal my brain of 28 years of Venlafaxine and 4 years of pramipexol. On the long-term, I should recover. No, I mean: I will fully recover.
It was too nice. I went off the hospital last Friday, and I was already not so well anymore Since then, my DA withdrawal symptoms have ever increased to become unbearable: RLS massive attack on day and night, anxiety, panic attack, nausea, sweating, chills and tremors. I can’t even take care of myself. I probably suffer from DAWS aggravated by the lack of Venlafaxine. And the hospital doesn’t want to take me back because ‘my weaning went well’. They don’t know about DAWS, post acute antidepressant withdrawal symptoms, or any of those things. For them, weaning is easy : after two or three half times of the molecule, you’re clear and good as it’s not anymore in your system. They are professional health care providers, and they don’t know that the problem starts when the molecule has left totally your body, because without it your brain is no more used to produce, at the right level at least, the corresponding neurotransmitter, or receptor, or transductor, and it has to relearn to do it from scratch, and it can take weeks, months, and sometimes years. It requires a lot of restructuring, and it’s not magically done in an hour…
They just gave me some anxiolytics at the ER, and that’s it. My body and mind are under torture most of the time, and they just don’t get it.
I’m now thinking about very dark solutions to make all this horror show stop.
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