I was diagnosed with RLS about 13 years ago. Started on Pramipexole at that time and after a year switched to Ropinerole, which didn't do as much. Switched back about 10 years ago. On it ever since. Going to try Gabapentin Enacarbil, which works differently. Haven't started it yet. Can't get a definitive answer on the transfer. I want to take the Gaba now and continue with the Pram, as it says Gaba takes about 2-3 weeks to really become effective. However, I get conflicting info from different site on interactions. WebMD says zero interactions, while others say there are 3. Not sure what to do. Primary said to overlap for a couple weeks, but I'm nervous about interactions.
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grizzly99
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Welcome to the forum. You will find lots of help, support and understanding here.
Gabapentin Enacarbil which is also called Horizant works for 24 hours and is expensive. I assume you are in the US. You don't need it for 24 hours as RLS generally affects us at night.
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. 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. Dopamine agonists like pramipexole and ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 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 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 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? 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, foods high in glutamate, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, 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 (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, 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.
P.S. if you are having RLS symptoms during the day and that is why your doctor is considering Gabapentin Enacarbil it is because you are suffering from augmentation. More likely she is considering it because it is FDA approved but gabapentin and pregabalin are used off label for RLS. Gabapentin Enacarbil is basically the same drug just formatted to last 24 hours.
You have given me more info on RLS than I have ever gotten. Most physicians that I've been around think RLS is only a bedtime thing. Unless I keep busy and my mind occupied, mine start up as soon as I start to relax in the afternoon. I currently take .5mg around 2-3 and then .5mg around 8PM and this usually gets me through the night. If I forget and sit down late afternoon to watch TV or a movie, it will start up and once it does, it's a good 2-3 hours before it calms down. I also get it in my arms every now and then.
Concerning iron, my "regular" blood tests show normal iron in the blood but there is no test that I know of that measure how much iron penetrates the brain. Is this what the full iron panel does?
You are definitely augmenting as you are taking twice the maximum dose of pramipexole which is .5 mg. 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.
Ferritin is the best indicator of how much iron passes the brain blood barrier so that is why it is measured. So it is important to get the full iron panel as a regular blood test for iron does not give the ferritin. And even when you get it, it is likely that the doctor will say it is fine but what is normal for others is not normal for those of us with RLS so be sure you get the actual number plus your transferrin saturation (TSAT). Increasing your ferritin is especially important when you are suffering augmentation and if your ferritin is below 100 you will want to get an iron infusion to bring it up quickly as that will help with your withdrawal.
😘hi this post could be me !! my day time ones are getting worse and mine start with relaxation but because of back troubles i dont move much anyway, and lower dose sifrol.. phew struggling.. but not long now and i can say ive stopped Sifrol all together 👍😘xxx
As you've been on dopamine agonists for years, you're probably suffering drug-induced worsening (augmentation). However, you can't just stop Pramipexole. Withdrawal is hellish!
Reduce by half a 0.088 pill every 2 weeks.
The gabapentin enacarbil is a good alternative but takes 3 to 4 weeks to be fully effective. AND it doesn't stop the severe RLS caused by Pramipexole or reduce withdrawal symptoms. It starts to work once you're completely off dopamine agonists. Lots of people give up gabapentin or pregabalin or horizant because they take them at the same time as dopamine agonists and their RLS continues to worsen/ doesn't improve. Their doctors don't seem to know that they will not work until patients are through withdrawal from ropinirole/pramipexole/rotigitone.
You may need a low dose opioid, like codeine or tramadol to settle the withdrawals. Or cannabis.
Follow SueJohnson advice.
Stick with the withdrawal, even when it becomes unbearable. Once you're off tjat stuff, you'll realise how severe it had made your RLS.
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