Pramipexole

[Farmgurl1]

Hi there. I've been on Pramipexole for about 5years now. I take a very low dose of one .088mg tablet per night, but my doc says it's perfectly fine to take 2, as that would still be considered a low dose. I HATE taking tablets so I have been fighting it, but the medicine only works some of the time and my legs are bad at night 50% of the time. I wanted to ask what are the average doses people here take for moderate/severe RLS at night? I'm on oestrogen now, and I think this is making it worse....it used to be only one leg at a time, and now it's both. I don't sleep on the nights that are bad.

Many thanks

[SueJohnson]

It sounds like you may be augmenting. 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.

If that is the case you will need to come off it. Pramipexole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. Up to 70% of patients will suffer from augmentation. 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. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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. To come off pramipexole, reduce by 1/2 of your ,088 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. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, 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. 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 divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them and if you take calcium don't take it within 2 hours. 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...

[SueJohnson]

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, estrogen as you are finding out, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.

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.

[Joolsg]

I agree with Sue. UK doctors know ZERO about RLS and they have no idea that the drug actually worsens the disease. It over excited the D1 dopamine receptors and they scream out for dopamine and the RLS starts to get worse, start earlier and move to arms, hands, back and face.Read ALL you can about Augmentation because I guarantee your GP will not know what it means or how serious it becomes. There are other drugs that are now first line treatment. Did he order full panel bloods? If not, ask him why.

sleepreviewmag.com/sleep-tr...

[Birdland]

If I were you I’d stop the estrogen first and see if you go back to where you were before taking it. In my case estrogen put my RLS into overdrive. I would suggest you try that before changing pramipexole dose. I would love to be able to go back on estrogen but it is a major trigger for me. Good luck.