So! two weeks ago I started taking lesser and lesser doses of my pramipexole. My usual dosage was 7.5 mg then week one was .50mg, not too bad, just a little longer in duration every day. I could cope. However, this week I'm on .25mg. Its like taking nothing at all and my episodes are miserable and long. It could drive sanity over the edge, I'm sure. My plan was to get off Pramipexole and on to something more viable. I have no idea what my doctor has on her mind as I e-mailed her to not go on to what she suggests, Ropinirole, as it was told to me by Health Unlocked and also a forum from the States that the drug is the same and I was wasting my time and money. I have never heard back from her and I have 2 pills, .25mg left. What am I in for after tomorrows last pill? Should I be concerned or is it normal to go a while without anything? She can't prescribe anything that is considered an opiate as the V.A. will not do so.
Pramipexole weaning: So! two weeks ago... - Restless Legs Syn...
Pramipexole weaning
I'm so sorry for the horrible situation you find yourself in.
You started from an incredibly high dose and have gone down for too quickly.
You need to get back to a comfort zone-- before you got the bad heeby jeebies.
Then cut down by micro doses.
Sue will be on to guide you further.
Or read up on many replies to this situation.
Good luck.
You should reduce by .125 mg every 2 weeks. Hopefully you still have a prescription and not just 2 pills. Go back up to .50 and let your symptoms settle before starting to reduce by .125 mg.
That's a little late. this was her plan and I can't deviate from it now. I just don't know where she's going next.
That's my bad here. I was on .75 mg NOT 7.5mg.
By the heebie-Jeebies do you mean these uncontrollable jerking and twitching I'm constantly doing this week? It's like this RLS is all over my body at times, now.
Wow 7.5 crazy Dr. My GP said I could take more but I didn't sue to my research and then when I got a Dr. That knew something he said good thing I did t raise or else the withdrawals would be horrible, but it sounds like you have done quite well, until now. Have you not been given anything else to take instead? I am on .125 pram and when it stops working I stop it and go on Tramadol, then after a few days brake I go back to prami and it works again. If your not sleeping at all maybe stop it for awhile and then go back on? Sounds like your Dr. Is not much good, maybe go to emerg. And get something else?
Sorry about my misinformation. It should say .75mg. NOT 7.5. Your doc seems more knowledgeable than mine.
Switching back and forth is not a good idea. Why not just stay on the tramadol?
I have been on pramipexole/Ropinerole for 50 years. It got worse as I got older. As one wears off I swap to the other back and forth most of my life.
I have discovered if I take a Zapain (codeine) with my last 2 tablets of the day it helps.
I am seeing a neurology doctor this week. I am hoping he can recommend something new.
Truth is they still don't know what causes RLS. I am so tired of not being able to sleep/relax/
Sit and watch TV. It's part of my life and I am sick and tired of it.
I have just replied to Tcakeeater my name is cumon Eileen.
If that is your real name you should delete it as we are supposed to be anonymous on this site.
I just realized you meant your name is "common" not that your name was "Cumon Eileen" so that is OK.
You are suffering from augmentation and need to come off it. Since I don't know which one you are on right now, I have given you the information for both.
First off check if you are on the slow release ropinirole (pramipexole) . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole (pramipexole) because the slow releases ones can't be cut.
To come off ropinirole (pramipexole) reduce by .25 mg ((pramipexole - half of a .088 [.125] tablet) every 2 weeks or so. Ask for a prescription of these if needed. 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, Neupro 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 them but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
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 ropinirole although it won't be fully effective until you are off ropinirole (pramipexole) for several weeks and your symptoms have settled. After you are off ropinirole (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 or magnesium-rich foods, 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 nor calcium-rich foods 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, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
First off; I am under a doctor at the V.A. I have no control as to where she is taking me next. Secondly; She has me tapering down to zero over two weeks from .75mg to .50mg to .25mg and then ? And Thirdly; The V.A. will NOT prescribe gabapentin as it is a controlled substance (even if it is not an opioid). There is NO XL or ER in the title of these pills. I have to listen to the doctors, I have no alternative. They may drop me from the V.A. if I squabble (in my opinion). If I ever hear back from them I’ll post it here. So far I have one more .25mg and that’s all I know right now. I really appreciate all you do about this subject but it helps little when I am in the dark about the future. I do have a scheduled ferritin blood test withdrawal tomorrow and I will get the results a few days later. You mentioned dividing these pills but she sent me pills according to the tapering doses of .50m and .25mg. formulated by the V.A. Pharmacy.
Some of the things you mention to avoid or to eat more of, are so ambiguous, such as the Low oxalic diet that says nuts are not good; however almonds are recommended because of their high magnesium content in some articles. Dark chocolate has many attributes but not here? Then some articles say: Avoid vitamin C supplements. Your body converts vitamin C into oxalate, so avoid using high-dose vitamin C supplements unless your healthcare provider recommends it. Some sites promote taking Vitamin C to help relieve RLS symptoms. I can go on but you can see that everyone has a theory but no one has a cure.
BTW! As of late I have been taking about 10mg. of THC when I am having sleep problems. If it is taking too long to fall asleep then this will help me sleep for a few hours. I will awaken suddenly and then fight the rest of the night with insomnia.
I live in California. I am a Male. I am sleepy. I am frustrated, and I am pissed that these doctors keep you in the dark or seem to brush this condition off.
Actually my reply was to Tcakeeater not to you. And I am so sorry for the way the doctors are treating you.
I know you can't afford to go private but if there is any way you can borrow the money you could see Dr Mark J. Buchfuhrer who is near Los Angeles who is a world renowned expert who may have video appointments or in any case you wouldn't have to see him after the first visit. You can email him at somno5586@outlook.com to inquire about his fee - possibly he would have a lower rate if he knew you couldn't afford much. No harm in asking.
You could also see Dr. J. Steven Poceta at the Quality Care Center in La Jolla a suburb of San Diego. There are only 10 Quality Care Centers in the US and they are experts in RLS.
I also have names of knowledgeable doctors in San Francisco and Fresno.
You are getting nowhere with your doctors at the VA and you are going to continue to suffer going there.
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