I have now been off pramipexole for 52 days, and off kratom for more than 3 months. I stopped taking pramipexole in the spring of last year, replacing it with kratom. When I started building tolerance for kratom I decided to quit, but the withdrawal was really horrific with acute RLS. Out of despair I started taking pramipexole again and it only took me 2 weeks to augment on it, putting me in the same state I was when I initially stopped taking it. What a poison!
So I have not been using anything to dull the pain. And now that I am back to base line, I am experiencing really weird symptoms. Bubbling left foot with frequent spasm/cramps. But only in my left foot. Not the RLS I know so well. Sometimes my right foot gets the good old RLS, but rarely. I have been taking a ton of suppliments, and I have also changed my diet to what is recommended on rlcure.com/ Because of the weird symptoms I think possibly I have an electrolytes imbalance, meaning I have taken too much magnesium and other electrolytes. Has anyone experienced this?
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sigurdur
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It's only 2 months since you stopped Pramipexole, so you will still be experiencing withdrawal AND untreated RLS.I think your symptoms sound pretty standard for dopamine withdrawal.
If you have decided to go completely med free, the best chance you have of controlling your symptoms is to raise your serum ferritin above 200ųg/L.
I am being offered opioids. But I am going for my second iron infusion this week. If I have no results from that I will probably accept the medications. I really can't live like this.
I or Joolsg may have told you this but in case we didn't. If you do end up needing opioids ask for buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals.
I admire your attempts to not take any drugs at all for your RLS. There is no cure, I'm told. I had to go without my daily dose of 1.5 pramipexole for one night while on a cruise . The withdrawal was awful. The doctor told me it was a dangerous drug (yeah?) & that's how drug addicts felt in withdrawal. He gave me two shots & a sedative of some sort which I didn't question & finally got over it. I have taken Gabapenten which gave me delirium but I'm soldiering on with the ever- diminishing effective Pramipexole & hoping for a reliable replacement one day. All I can say to you is keep going . I have read many comments about this dopamine deficiency & the dopamine pills don't work, I'm told . Reading some of readers' stories makes my problem seem very small but it's very real to sufferers of this horrible affliction. Keep going & good luck.
1.5mg of Pramipexole is criminally negligent. The maximum dose is 0.5mg. You WILL be suffering very severe, all over RLS on such a high dose.Read about augmentation and take back control.
Reduce by half a 0.125mg pill every 2 weeks. If you can persuade your doctor to prescribe methadone or Buprenorphine, you might escape the severe withdrawals.
But do consider legal action against the doctor who has prescribed that dose.
Get full panel iron blood tests (morning, fasting) and raise serum ferritin above 100ųg, preferably 200ųg/L.
Once you start the reduction, keep us updated so everyone can help you through withdrawal.
Welcome to the forum. You will find lots of help, support and understanding here.
Joolsg is right. The signs of augmentation are 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.
You are augmenting which means you need to come off it as it will only get worse.
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 post back here as the advice will be different.
To come off pramipexole, reduce by half of a .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 it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
Since you had problems with gabapentin I suggest you try pregabalin. Although it is basically the same drug except you don't 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.
The beginning dose is usually 75 mg. If you are over 65 and susceptible to falls beginning dose is 50 mg . 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 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. 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 200 to 300 mg pregabalin."
If you find you have the same side effects then your option is a low dose opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals.
I would suggest you bookmark this post as it is going to be a long time before you need some of this information.
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 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, 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, 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.
It sounds like you need a new doctor. If you tell us where you live and if in the US what city and state, we may b able to give you the name of a doctor who is knowledgeable about RLS.
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.
Hello Sigurdur, I too have experienced all of those strange symptoms - usually in my left leg and foot and also sometimes shooting pains in my legs in various places. Any change in medication - be it amounts, times or even additional medicines such as antibiotics, seem to set it off - I’ve just accepted that my nervous system is so over stimulated and reactive that these strange symptoms just occur . The symptoms then calm down as quickly as they come and there often seems to be no identifiable reason. I tend to think that it’s all part and parcel of the syndrome and the effects of the drugs that we use and then often have to wean ourselves off of.
I no longer tolerate most supplements, especially magnesium and vitamin B6 but also others that stimulate serotonin synthesis, they all set off RLS for me. Better to get what you need from food.
I do remember my severe RLS preceded by lots of epic leg cramping at night. I started lots of electrolytes - Nuun tablets or my go to: 1/4 tsp sea salt and 1/4 tsp cream of tartar (potassium) in juice or water 20 oz. This dovetails with the connection of SIBO (small intestinal bacterial overgrowth) to RLS, especially malabsorption of iron.
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Advice would be much appreciated
