I’ve had PLMD for twelve years. Pramipexole at .25 mg worked well until recently. I’ve always needed an extra.25mg when I had a salty meal or poor hydration. I had to increase that to extra .5mg. Also started having symptoms during the day - so regular RLS presumably.
I started Pregabalin 8 days ago. 75mg morning and an hour before bed. I continued Pramipexole at .25mg before bed, then reduced to .125mg after a few days. That seems to work. Hoping to eliminate the Pramipexole altogether soon. But I tried that last night and was woken after an hour of sleep. Took an extra 75mg Pregabalin. That worked for five hours before being woken again. Had to take some Pramipexole.
I assume it takes a while longer for the Pregabalin to fully take effect? I read that some people continue taking Pramipexole along with Pregabalin, but I hope I don’t have to for much longer.
And I’m not sure what to do when I have a salty dinner? Double the dose of Pregabalin that I’m on, or add back some Pramipexole? Or both?
My doctor doesn’t seem to know any more about this than I do, but is willing to try what I suggest after she reads a bit about it.
Thanks for any advice!
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Welcome to the forum. You will find lots of help, support and understanding here.
Do not try to stop pramipexole cold turkey and pregabalin won't work un til you are off pramipexole for several weeks and your symptoms have settled. Instead follow the following.
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.
On the pregabalin, beginning dose is 75 mg pregabalin. It won't be fully effective until you are off pramipexole for several weeks. After that increase it by 25 mg 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. You don't need to take it in the morning. 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 of 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, foods that cause inflammation, 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, 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.
Can you provide some support for your statement about Pregabalin not working while on Pramipexole? The Mayo article (very helpful - thanks; I'll also pass it on to my doctor) does say you can combine the two (in the refractory RLS section). My ferraitin was 51 and iron saturation 46%, so I think I will try the iron supplementation that the Mayo article recommends.
With your saturation 46%, I would talk to a hematologist before taking any iron as it is above 45% may be harmful. You will notice the Mayo Algorithm says if less than 45%.
As far as salt, you are going to have to go on a low sodium diet. Taking extra medicine is not the answer at this point. Once you are off pramipexole and have your symptoms under control with pregabalin you might be able to have a meal with regular salt and take an extra 25 mg of pregabalin to counter it. And stay hydrated.
thanks. My iron level was 155 7 months ago, so that seems fine. My other med is a PSK 9 inhibitor (Repatha) as a statin substitute (an injection every other week). I take Curcumin, melatonin, low dose naltrexone, magnesium (just switched from citrate form to glycinate), B-12 and D3. I have gabapentin that a neurologist prescribed as a headache prophylactic - I was taking 100mg morning and evening. But I’d like to wean off that.
I can’t imagine stopping Pramapexole without something taking its place - I wouldn’t get any sleep. Does it block Pregabalin from working? Why would some medical sites recommend taking both?
Melatonin makes RLS worse for most so I would stop it. If you need something to sleep, I recommend Lunesta. I use 2 mg for another problem and it works very well although my RLS is under control.
Gabapentin is basically the same drug as pregabalin. You could add 25 to 50 mg to pregabalin and stop the gabapentin without weaning off it.
Yes the Mayo Algorithm mentions taking both but that is for refractory RLS. "Refractory RLS is restless legs unresponsive to monotherapy with tolerable doses of first-line agents due to reduction in efficacy, augmentation, or adverse effects." But you are not there at this point.
Pramipexole doesn't block pregabalin from working, it is just not very effective until you are off it for several weeks.
Pregabalin might work very well once you are off pramipexole for several weeks and start increasing it. And if you get to the maximum amount and it doesn't work you could go on a low dose opioid and there are other things you could try, so you are not out of options.
Yes for the several weeks after you stop pramipexole and before you start increasing pregabalin, you may not get much sleep. But it is temporary and you will get through it as has many of the people on this forum.
I agree with Sue. You have to slowly reduce pramipexole if you ever want relief from augmented RLS. Pramipexole has caused the worsening of your disease. We have all been in your position. Withdrawal is hellish and there will be a period of severe RLS, with little or no sleep for a few weeks as pramipexole leaves your system and the pregabalin begins to take effect. But once off pramipexole, your RLS will reduce in severity. Pregabalin should then cover your symptoms.
Melatonin worsens RLS for the overwhelming majority.
Let us know where you are, and we can recommend someone or, if your doctor is happy to research, tell her to check out the Mayo Clinic Algorithm and Dr Andy Berkowski's website. He has done many excellent webcasts on RLS and studies on buprenorphine.
Thanks much. It’s early in the process but I think I’m doing okay reducing the Pramapexole to .125 and using 150 Pregabalin. I’ll see how that goes for another week or so and then cut the pramipexole in half again. I got some cannabis tincture and vape stuff today to try out if needed (I’ve used edibles for several years, generally just 5mg, to help with sleep - it keeps me from constantly dreaming somewhat). I think I can get my doctor to let me try buprenorphine if I need it.
I live in Northern California, near Santa Rosa. I’m okay taking the lead on this so long as my doctor remains flexible and helpful.
I’d still like to understand why pramipexole reduces the efficacy of pregabalin. I don’t see an explanation for that anywhere. Just mentions of combining them.
I can’t live on a low sodium diet indefinitely. I keep it pretty low, but the ability to manage the RLS with extra meds when I do eat out is important to me. If extra Pregabalin doesn’t accomplish this, I think I’d rather go the dual rout and take both. Does taking an extra 75 or 150mg of Pregabalin for this work? I can’t imagine an extra 25 mg would do much if I’m already taking 150-300.
Pramipexole doesn't 'reduce' effectiveness. Rather, the raging RLS caused by the overstimulation of D1 dopamine receptors is so intense that pregabalin cannot control it. There have been reports on here of a lucky few who have managed the switch without hellish withdrawals. But it's rare. It's best to keep pregabalin below 200 until you are off Pramipexole because you cannot tell what dose is effective until 3 weeks after Pramipexole has left your system.Here's an article by Dr Winkelman which helps explain how Pramipexole ramps up RLS symptoms.
Dr Buchfuhrer, a top RLS expert is in Redwood California and runs a clinic.
Pramapexole is a dopamine agonist. I have gone through withdrawal from another dopamine agonist, Ropinirole. These drugs can have a very strong pull on the brain. This is not completely noticeable until one is fully in the withdrawal process. It’s my belief that Pregabalin is not fully effective until off of pramapexole because these DA drugs can have such a dominant effect on our brains that it’s difficult to override them. Sorry that I’m probably not making a lot of factual sense. I’m sure you can take pramapexole and pregabalin together, but chances are once you are off the pramapexole and are no longer suffering augmentation you most likely won’t need too.
Hi. From my personal experience of coming off Pramipexole to go on Pregabalin, it took several weeks to reduce the Pram and several weeks to get up to a satisfactory dose of Pregab and for side effects to settle. Keep going, it’s rubbish but you will get there!
the other disadvantage of staying on Pramipexole is that in the long term it is likely to make things worse. If you have had RLS during the day and you have had to increase pramipexole it sounds like the beginning of augmentation. If so then you’d be well advised to start reducing pramipexole and replacing it with pregabalin. Here’s the pinned post on augmentation
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