I would like to hear your thoughts on coming off pramipexole, as I was not expecting this level of dependency and withdrawal symptoms. I was prescribed 0.088 mg of pramipexole (a dopamine agonist) by my GP in the UK when I was 35, as my RLS flared up, likely due to menopause. I had been taking it as needed, usually less than a full tablet.
Without realizing it, I began taking half a tablet every night over the past six-nine months. A month ago, I experienced augmentation, along with nocturnal binge eating. Thanks to this forum, I approached my GP, but unfortunately, they seem clueless about how to manage this other than suggesting an increase in pramipexole.
Last weekend, I attempted to stop taking the half tablets, but I went through two extremely traumatic nights. I experienced severe akathisia, loss of balance, hallucinations and night-time binge eating.
Could you kindly provide guidance on how to safely quit this medication without traumatizing my family? Thank you!
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Lauranath
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Welcome to the forum. You will find lots of help, support and understanding here.
Ropinirole, pramipexole and Neupro (rotigotine) are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut if needed. Normally to come off pramipexole, you would reduce by half of a .088 tablet every 2 weeks or so but this is too much for you. You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
You will have increased symptoms. but not the extreme ones you had. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off pramipexole 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 as the peak plasma level is 2 hours. 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 divide the doses on pregabalin) Most of the side effects 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 of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).
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...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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 like therapulse, using a standing desk, listening to music, meditation and yoga.
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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in
Did the GP warn you about augmentation and how hellish withdrawal would be?
Are you on any other meds?
Has the GP done full iron panel blood tests and reviewed you for trigger meds that can cause RLS?
Raising serum ferritin above 200ųg ideally can resolve the majority of RLS and should be first line treatment.
Normally we suggest you reduce slowly by half a 0.088 pill every 2 weeks.You had very severe withdrawals- which is not uncommon.
You will need to report this to Yellow Card Scheme and GP and ask for URGENT referral to a sleep doctor or neurologist. But there are so few who know about RLS.
You are likely to need an opioid and clonidine /benzo to help you through withdrawal. Probably Buprenorphine, a long half life opioid to help you off Pramipexole.
Where are you? We can recommend a neurologist who understands about opioids to reduce withdrawal.
Another possibility is to buy a jewellery scale from Amazon to shave down Pramipexole into smaller amounts.
My GP has not provided any warnings about these issues. I know I’m already on a very small dose and have used it consistently for less than a year, but DAWS has been truly shocking, especially for my kids.
Before quitting, I requested pregabalin as Sue suggested and they prescribed 25 mg. My GP mentioned that my blood test from October looked fine, but I have thalassemia minor, so I’ll request a new full iron panel blood test.
I’ll also ask for a referral, though I’m unsure how quickly I’ll be seen. In the meantime, I need to educate my GP and create a plan for coming off pramipexole. I’d also like to assess my base level since my menopause symptoms have settled a bit—perhaps my RLS has improved and I can manage without continuous medication.
I live in Manchester (UK) and would love to hear any recommendations you have for a neurologist. Thank you!
I went to see Dr., Murphy privately because as you say his waiting list on the NHS is very long. He has written to my doctor to check my bloods again and recommended Neupro patch and cannabis from curealeaf ……as I weened myself off pramipexole and gabapentin was not working for me and I have put a stone on in weight. I do take magnesium, vitamin C and a gentle iron, I’m 63 years of age. Your advice on the neupro patch would be much appreciated……Regards Gillian.
My advice is to come off it. It is a dopamine agonist just like pramipexole and will lead to augmentation.
You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. Easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce.
If you aren't taking it yet contact him and ask for gabapentin or pregabalin or just ask your GP for one of those as unlike opioids they don't need a neurologist to recommend them.
hello from the other side of the pond. Last night I went through the same thing. My story, basically same as yours. Except I am a man and no menopause - obviously. I reduced by 1/8 tablet every 7 days approx. my GP prescribed gabbaoentin to transition over to. It has not helped at all. I read that it won’t help until we come of the pramiorexil. This creates a double bind because on one hand want to come off slowly, on other side need to come off right away so that something else would have a chance at working. Bottom line it is going to totally suck. I am taking some weeks off work only to do this. And yes… the binge eating is real!!! Get to 1/4 amount and then drop to zero and prepare to suffer for a few days. Not sure what else to say except thanks for sharing and try to stay strong.
Welcome to the forum. You will find lots of help, support and understanding here.
Do see my long post above.
Yes gabapentin doesn't help much until you are off pramipexole but it does need to be started 3 weeks before you are off as it takes that long to be fully effective.
You can certainly increase the rate you are coming off it as the normal reduction is 1/2 a tablet every 2 weeks whereas you are reducing by 1/4 a tablet every 2 weeks. As long as you wait for your symptoms to settle from a reduction you can make another reduction.
How much are you down to?
And do let me know if you are on any medicines. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Hi… as of last 2 days I am now down to 0!!!! I am also off all other ends… except I was taking something for weight loss like a generic Wegovy… but not taking that anymore either… but would like to try that again. I had been binge eating while coming off the pram. - which is probably why I was gaining weight regardless of what I did.
I have read some of your posts… maybe you have an idea about something… I don’t know what to do about exercise. I really enjoy strenuous exercise to reduce stress and improve my mood… but on the days I work out the RLS is worse.. Any suggestions?.
Also where do you live? I’m in Northern California
No - not a doctor and my only patients are on this forum.😀
I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
Wow you are an inspiration. So gabba is enough to control it for you? No opiates? I am very worried about if this will be controlled after I come off pram.
Unless your dopamine receptors have been damaged by long time use, it should work. For some people there can be side effects they can't live with but opioids are even more likely to have side effects that are hard to live with. And the nice thing about gabapentin or pregabalin is that they are easy to come off of if done slowly.
Stable dose. During the first year one may have to adjust the dose but after that it might be a decade before one has to add 100 mg. gabapentin or 25 mg pregabalin. Considering that the maximum dose of gabapentin is 3600 and pregabalin is 600 mg and the usual effective dose is 1200 to 1800 gabapentin and 200 to 300 pregabalin having to increase that small amount maybe once every decade is not a problem.
Ceba 1, I also live in northern CA - near Sebastopol. After finding this site, I talked my GP into letting me try buprenorphine, gabapentin, dipyridamole, and a few others.
Buprenorphine made my withdrawal from Pramipexole almost easy - only two weeks and no horror story as is typical without it. I know my experience may be unusual. But I’m a big buprenorphine fan. After a year on it, I’m currently transitioning to gabapentin / pregabalin because of the typical opioid side effects. That is also going fairly smoothly. I also have the Nidra TOMAC bands. They aren’t the miracle worker that buprenorphine is, but they come in handy for mild RLS breakthrough symptoms. Medicare covered the cost.
While finding a doctor who actually knows how to treat RLS would be ideal, learning all you can from this site and other research and finding a doctor who will listen to you is the next best thing.
I was on a slowly increasing dose of mirapex for 20+ years, and because of augmentation had to go off it. My doc gave me a low dose of an opiate while I was reducing the Mirapex and it wasn't very difficult.
I too have been having a dreadful time trying to come off pramipexole. I started trying to come off a dose of .012 at lunchtime and 3 x 0.088 mg at night. I started about 18 months ago and have now got to a dose of half a 0.088 mg at lunchtime and 1 x 0.088 mg at night. This doesn’t always work but I am now on gaberpentine 1 x 300 mg in the morning, 2 x 300 gm at lunchtime and 3 x 300 mg at night. I also take two lion’s mane tablets at lunchtime which I am trying as I have read good reports of their effectiveness against rls. I am still struggling to get off pramipexole! I also have liquid tramadol to take if things get really bad. Which I do try to avoid taking. It is a nightmare and must be done slowly. During this time I have had a knee replacement op and fractured my patella. I do believe stress can make my rls worse so that may be why it is taking me so long. Good luck on your journey. I’m still binge eating at night too!
How come no one mentions Horizant? My sister and I (both in out 70’s) use it and it works! I quit taking ropinirole after a year because I was afraid of augmentation. You do not get augmentation from Horizant. You can purchase it from Truax Patient Services in Minnesota. I have spoken with several of the pharmacists there and they are very helpful. They know more about RLS than most doctors do. Insurance does not cover it and it’s about $50 for 30 tablets. Expensive but it works!
The reason is it is not really very available in the UK. Horizant is a 24 hour version of gabapentin and since one only has RLS at night it is not needed other than then for 99% of us. A few do find it is better. And in the US gabapentin or pregabalin are much cheaper and covered by insurance. On my 2024 insurance I paid $12 for 1500 mg of gabapentin for 3 months and this year on my new insurance even less.
I see! Maybe I should try gabapentin again because yes, it was much cheaper. I tried it once, and it didn’t work but at that time, I was still on Ropinirole . I might give it another shot. Thank you!
follow the advice here and you will get off of this poison. It’s going to be a challenge, very difficult. The folks on the forum, like Sue Johnson and others, are giving the best guidance available. You can do it. Hang in there 👍
It took me 3 months to come off this med. I was on .625 a day. And had .125 pills. So every week I came down one the last few weeks was very hard I went days without sleeping hours without sitting very painful. After I came off the medicine they had tried me on different ones that didn't work and I ended up back on the same one.
I see you tried gabapentin and pregabalin 5 years ago
You said they didn't work. I suspect you didn't take enough. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." Did you take this much?
You also came of pramipexole much too fast so no wonder it was horrible. At .625 it should have taken you almost twice as long.
And since you came off so fast your withdrawal symptoms probably lasted a longer time than normal so the gabapentin and pregabalin wouldn't be effective.
Or it may be because you were on more than 1-1/2 times the maximum amount of pramipexole your dopamine receptors may have been damaged so they wouldn't work, in which case a low dose opioid should have been prescribed.
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