I am a 69 year old female that has been taking Pramipexole for RLS for over 30 years. My doctor has increased the dosage periodically when the drug seems to lose its effectiveness. My current dosage is 1.5mg x 2 per day and have been on this dosage for about 10 years.
I have been experiencing for at least 8 years sudden drowsiness and a few years ago fell asleep while driving and totaled my vehicle but thankfully came out unscathed. I no longer drive long distances but still suffer from the excessive daytime drowsiness, will fall asleep on riding mower, and even during conversations with friends and family. At the same time, I also suffer from serious sleep deprivation, averaging less than 4 hours sleep per night and many nights don't sleep at all.
I have discussed with my doctor but he has dismissed my concerns so I am currently trying to withdraw from the drug on my own. It has been 3 days now since my last dosage and I have had little sleep due to the severe RLS symptoms and leg cramps but determined to stick it out in hopes of ridding this drug from my body.
I found this website and hope to find others that have gone or going through a similar experience that may offer advice.
Thanks in advice for your words of wisdom.
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N2fishing
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Welcome to the forum. You will find lots of help, support and understanding here.
On my goodness. You are taking 3 mg of pramipexole which is SIX times the maximum dose of .5 mg. You are suffering from augmentation. You need to come off it.
But do not just stop it cold turkey. That could be very dangerous. Go back on the dose you were on and follow the following reduction schedule.
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.
To come off pramipexole, reduce by half of a .088 [.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.
Ropinirole and pramipexole 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 but they are not up-to-date on the current treatment recommendations. Pregabalin is more expensive than gabapentin in the US.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] 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 you are off pramipexole for several weeks 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 split the doses with 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. 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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, C, 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. 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.
You also need a new doctor. If you tell me what city and state you live in I may be able to give you the name of a knowledgeable doctor.
Save this information about gabapentin/pregabalin because it is going to be a long time before you need it.
Thank you SO much to everyone for the great advice. I have thought for years that Pramipexole was doing more harm than good, but instead of coming up with alternatives, my doctor just kept increasing the dosage and telling me the drug was safe. Until today, I have never heard of the term Augmentation or the negative side effects from dopamine drugs.
Sue, you have given me a lot of information and I will need to reread it several times to digest all of it, but a couple of questions. What will happen if I do try to go "cold turkey"? And, how long would it take to rid my body of the drug? I do not like the idea of taking opioids or other drugs and like to think I can handle the withdrawal without them.
My current medications consist of the following:
Levothyroxin - was diagnosed with Grave's Disease about 20 years ago and my Endrocrinologist dissolved my thyroid with radioactive iodine.
Lisinopril - for high blood pressure
Simvastatin - cholesterol
Pramipexole Dihydrochloride 1.5mg, 2xday (no XL or ER - regular release?)
Xarelto - Was hospitalized last year with unprovoked blood clots in my lungs and DVT in both legs. When my body continued to produce blood clots months later while on thinners, my Hematologist did an abdominal CT scan and found a 9 mm malignant mass on my left kidney. A radical nephrectomy was performed last December. After running numerous blood tests and unable to find any other condition he believes the cancer was the cause of the blood clots. I'm hoping I can discontinue taking this at some point if that's the case.
My Ferratin level was tested last year at 121.2ng/ml, TSTAT 35%, and all other iron studies were within the normal limits.
That's it, no multi vitamins, or OTC medications...on rare occasions perhaps a Tylenol or something for heartburn. I don't smoke, drink, or use recreational drugs. I do like my Diet Coke and sugar/high carb foods and understand those could possibly be triggers. We live on a small farm which often requires rigorous work and I know I don't drink enough and get dehydrated. Many times, I will suffer with excruciating leg cramps that following night.
3 years ago, we moved near Tahlequah, Oklahoma and recently began seeing a family doctor in our area. He must be one of those many uninformed doctors as he noted my Pramipexole dosage but did not sound any alarms. In fact, he offered to increase my dosage some more!
Good, qualified physicians are hard to find in this area but we travel to Muskogee or Tulsa for Specialists as needed, which is a 1-1/2 to 2 hour drive one way. If you know of a knowledgeable doctor in this area that may be able to help, please let me know.
I'm hopeful if I can get myself off Pramipexole, I will be able to handle the RLS symptoms using some of the household remedies you mentioned.
Unfortunately both the doctors I have are at Oklahoma City which is not near you. But usually you only need to see them in person once and then can do telehealth and I would certainly ask them before you make an appointment.
Robert M. Gordon Oklahoma City (405) 286-5946 is on a list on the Restless Legs Foundation site however although the doctors have been submitted to this list by someone who used them and found them knowledgeable or by doctors who have applied to be on the list, they still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. If it is a person that submitted the name they might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and up-to-date is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.
I am looking for some others close to you but it may take me awhile.
Dr Shannon Foster at University of Oklahoma Sleep Medicine Clinic, Edmond, Oklahoma outside of Oklahoma City but she won't supply opioids if needed. She is used by Littlegran who you can message if you want. (click in a new HealthUnlocked and enter her name in members and then click on it and at the top will be a chat button to click on) I would also ask Dr Foster if she follows the Mayo Algorithm.
You definitely won't be able to handle your RLS just using the household remedies I suggested and after being on pramipexole for 30 years there is an excellent chance the gabapentin and pregabalin won't work because your dopamine receptors will have been damaged. Then low dose opioids will be your only option. You won't get addicted so there is no worry about that.
Quitting cold turkey means you won't sleep for weeks and will suffer tremendously.
Xarelto is probably OK.
All statins make RLS worse.
Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
If you end up taking gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL.
Lisinopril may or may not make RLS worse. it's probably OK. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor including side effects. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Sue, this is a side question I have, related to part of what you wrote to N2fishing - specifically this:
“. . . after being on pramipexole for 30 years there is an excellent chance the gabapentin and pregabalin won't work because your dopamine receptors will have been damaged. ”
I’ve come across similar statements on this forum and probably there are some good threads on it - however I really like to see studies as well. Are there any studies you can point me to so I can read & learn more about this issue?
Reason I ask is that after roughly 20 years on Mirapex, I have found that Horizant does help me - but not enough at the usual 600 mg single-pill dosage; so I must also take methadone. Thus I’m curious about whether my long time on Mirapex may have lessened my responsiveness - not that I can do anything about it! Even now I still take slightly less than 0.125 mg of Mirapex & am slowly lowering the dose with the help of a gram scale. I hope to get to zero some day. If I go too fast the Mirapex rears its ugly head (metaphorically speaking).
Back to Horizant - one other aspect I want to mention is how long it takes to start working: The first time I tried it (after going cold turkey off Mirapex and staying off for several months), it had zero effectiveness after 4 nights. That was 11 years ago and the specialist I was then seeing said that if it hadn’t helped after 4 nights it would never help. Well, many years later I found out she was wrong. It can take up to 2 weeks to help some folks. In my case, with my second try at Horizant 2 years ago, it took 10 days. So that specialist did me no favors back then!
These are listed in the order I would try them especially the first one as he has indicated he treats RLS more than the others although they all do.
Dr. Rodney Myers 1245 S Utica Ave Tulsa, OK 74104 (918) 560-3823
Dr. Alok Pasricha 8803 S 101st East Ave Ste 280 Tulsa, OK 74133 (918) 560-3823
Dr. Jorge Gonzalez 5010 E 68th St Ste 102 Tulsa, OK 74136 (918) 236-5881
Dr. Randall Webb Utica Park Clinic 9001 S 101st East Ave Ste 300 Tulsa, OK 74133
(918) 579-3870
All have indicated telehealth available except Dr Gonzalez although you can ask.
All also treat Parkinson's so it is important to ask if they follow the Mayo Clinic Updated Algorithm on RLS since the amount of pramipexole you are taking would be normal for Parkinson's.
Please let me know if you do see any of them and what your experience is so I can add them to my list of doctors.
Thank you so much for all the feedback. I will keep your recommendations and list of doctors and will try to schedule an appointment with one. I will let you know how it works out.
Hi N2fishing, So much of what you say is an echo of my thoughts. Having a Dr who isn't savvy about RLS and the changes in treatments in just the past 1-2 yrs, isn't a good thing but good luck finding one who is. I watch YouTube webinars by Dr. John Winkelmann and Dr. Andy Berkosky, to me these are gold. I tapered off of Requip, 4mg 3 times per day, over 9 months, it was hell. I took methadone to deal with the pain, but it wasn't a good med for me. I've tapered off of it also and will be on oxycodone indefinitely for RLS and other pain issues. I'm unable to use NSAIDS or gabapentin. After being on Requip for over 20 yrs I suspect I'm having long term affects from it. Take care on your journey. You've had a lot going on, you deserve to be comfortable.
Hi N2fishing. Welcome to the forum and you are in a fix aren’t you and your doctor has done you no favours over the years. I was on Ropinirole a dopamine agonist for several years and like you I augmented so follow Sue’s advise and reduce slowly and for heaven’s sake’s don’t try cold turkey, it’s just not worth it and you could end up very poorly indeed. It will take time but I can promise you it’ll be worth it in the end. I was on 6mg Ropinirole and reduced by 0.25mg every 2 to 3 weeks depending on how long it took my body to get used to the reduction, it wasn’t easy but got easier with time and the reduction of medication in my body, it did take me 13 months in all but don’t be discouraged by that time passed surprisingly quickly and then all of a sudden, bang, you’ve achieved an amazing feat.
I don’t know about the other medications you are taking but I am on Lisinopril and confirm that it DOES NOT make RLS worse. I wish you great strength of purpose. Thousands have undertaken the journey you’re setting out on and successfully achieving ridding themselves of a drug that’s making their RLS worse and worse.
For your excessive daytime drowsiness I would suggest adderal or ritalin. Take it first thing in the morning and it will wear off by night. Then at night I would suggest lunesta to help you sleep although the RLS may still cause you to wake up. Do something to distract you for a half hour and then go back to bed.
Thank you. I read the article and that is exactly what happened to me. I have never heard of Augmentation before today. That all makes perfect sense, now. Sue has given me a list of doctors in my area and I will try to schedule an appointment with one.
My accident occurred some years back and fortunately no other cars were involved and no one was hurt. I veered off a country road and drove down a tree row for over 1/2 mile knocking out all the windows and breaking the front axle of the car before I woke up and discovered what I did. It was only after that accident that I researched my medication and discovered one of the side effects of Pramipexole was drowsiness.
The doctor that first prescribed the drug practices in Kansas City, but I have moved a couple times since and have seen 3 other doctors and no one has raised a red flag on the dosage. Other than the loss of the vehicle, which my insurance covered, not sure what I would have to gain by taking legal action.?
I have received so much information already for you all, I had no idea how dangerous that drug can be! Thanks again for all the advice.
Pramipexole also causes Impulse Control Disorder. Gambling, impulse spending, hypersexuality. There have been many successful class actions in the USA and several successful legal actions here in UK.Doctors are supposed to warn patients about augmentation and ICD when they prescribe these poisonous drugs.
I wish you strength in getting off Pramipexole. It's tough.
Hi, never sure which is worse, the so called cure or the disease. I have had periods of coming off pramipexol but on it at the moment. Just take your time coming off or you may get cold turkey. Good luck with this rubbish condition hope you find your cure.
I took Pramaprixol for 8 years. I had similar sleep problems like yours but I suffered PLMD. I also had increasing nightmares that became unbearable. I had a consultation with my GP and together decided that I needed to wean myself off, over a period of 3 weeks. Those 3 weeks were not good as far as sleeping was concerned but I stuck with it. I was told by an Australian friend to keep my feet as cold as possible when in bed and before goi g to bed. I now sleep with my legs uncovered and a hot water bottle filled with cold water near my feet. The difference to me has been unbelievable. Coming off pramaprixol has made me feel so much better in myself. For the first time in ages I feel human again and sleeping is so much better. I'm not saying every night I sleep perfectly but it's so much better and I wake in a morning with a clear head and not the horrible 'fuzzy' feeling I had before.
It wasn't easy but I don't regret coming off pramaprixol.
hi N2 fishing. Having been where you are, I just want to add my voice in support of the wonderful advise by Sue and encourage you to follow it. It is a hard road ahead of you and you most probably will need opioids . I, like you, was very scared of methadone but I am a much better place now on methadone than when I was before. The research strongly suggests that the risk of addiction ( as opposed to dependence) is very low for those of us taking opioids for rls. My doctor assures me that the 10 mg I am on is a very low dose.
Thank you for the feedback. I'm glad it has all worked out for you, that gives me hope. I am concerned about taking opioids, especially long term. Hoping I can manage without it.
I noticed your statin use and all statins can make RLS much worse. You need to get with a cardiologist or your PCP and figure out a different medication or get a cardiac scan if you haven't had one and a carotid artery scan. This will tell you if you even have plaque which is what statins do, break up plaque. When my cardiologist discovered that I had no plaque and had no previous heart attacks, she said I didn't need statins even though my cholesterol was high. The cardiac scan is not always covered by insurance but it is rather cheap as tests go and saved me a world of suffering on statins. My legs went crazy even on the lowest dose of statin. Perhaps you will also find yourself with much less RLS without statins. Of course, check with your doctor about alternatives first before going off.
I had a complete heart scan last December and was diagnosed with Coronary artery disease, and moderate calcification, nothing too serious, I would guess due more to age. I'll ask my doctor about an alternative to statin. Ready to try anything at this point. Thanks.
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