I’ve had RLS for 20 years. I’ve taken Pramipexole for 14 years. I’m trying to eliminate this disease and get off of Pramipexole. My doctor has prescribed me Gabapentin 300 mg to take daily. I’m still taking .75 mg of Pramipexole. How should I go about eliminating the Pramipexole?
Getting Started: I’ve had RLS for 2... - Restless Legs Syn...
Getting Started
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Welcome to the forum. You will find lots of help, support and understanding here.
Unfortunately you can't eliminate RLS. You can only control it's symptoms.
You are wise to get off pramipexole. You are taking 1 and one half times the maximum amount and are obviously suffering from augmentation. Pramipexole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It 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. To come off Pramipexole, reduce by half of a .125 mg every 2 weeks or so. Since you are taking so much you may be able to reduce faster at first. 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 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 it won't be fully effective until you are off Pramipexole 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. 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. Most of the side effects of gabapentin 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 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 .
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...
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. It is especially important since you are suffering from augmentation. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
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, 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.
I appreciate your help and time for such a thorough response. Another question I have is how do I take these meds in different doses. All I have is Pramipexole 1 1/2 tablets, and Gabapentin in 300 mg capsules. I don’t think I can do these measurements, and I can see that I need to do this right or I’m gonna have unnecessary withdrawals and intense symptoms. How can I do these measurements. I don’t think my VA doctor will prescribe different doses.
You won't need to increase the gabapentin for a long while so you can cross that bridge when you get to it.
On the pramipexole I am confused. You say you have 1 1/2 tablets. Does that mean you have .25 mg tablets and .50 mg tablets?
I am going to assume you have ,25 tablets and .50 tablets. First off I would try to see if your VA doctor to prescribe two ,125 tablets instead of the .50 tablets. Then you can get a pill cutter so you can cut them in half.
If not you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 ) and measure how much the .25 tablet weighs. Divide that amount by 4 to get the amount you need to reduce by every 2 weeks. Then you will need to shave off bits of a tablet weighing it to get to that amount.
my Pramipexole tablets come in 1.5 mg. I take 1/2 of a tablet or .75 mg. I have recently started 300 mg of Gabapentin, but not sure I should try to get off Pramipexole since I’m not at this time have problems at this dosage. Also I’m reading not so good of reports on Gabapentin. Should I drop the Gabapentin and stay on Pramipexole. I’m caught in the middle.