Hi all, firstly am so grateful I found this forum. I have learnt so much and feeling hopeful so thanks for all the insights and advice. After reading about all the warnings of augmentation and seeing the reduced effectiveness of pramipexole after taking it for 10+ years, I am now coming off it. Down to 2 tabs (.088) per night - broken fitful sleep though still getting +/- 5-6 hours (and much more if I lie in in the morning). Having the TV on helps with my sleep. Got some codeine/paracetemol yesterday to see if that would help (I only took 1 tablet which has 12.8mg codeine phosphate/500mg paracetemol) but it did seem to help and sleep wasn't as broken.
I would like to know how safe this is to use for the next month (1 or 2 tablets a night) as I come off pramipexole totally. Will probably have an iron infusion as well - waiting for iron results - and then if necessary go onto the gabapentin/pregabalin. Thank you in advance.
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tarrynws
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It's definitely safe. Congratulations for realizing you needed to come off pramipexole and reducing it as far as you have. It's not easy. You may have seen this in my replies to others but in case you didn't I'll give it again.
Reduce by half of a .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. The codeine will definitely help but you may need something stronger. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. As you are aware dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. 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)."
You said you are waiting on iron results. Did you get a full iron panel which will give you your ferritin and TSAT? Did you stop taking any iron supplements 48 hours before the test, not 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 do 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, ice cream, eating late at night, estrogen including HRT, 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.
There's really no need to suffer at all if you can find a knowledgeable and brave doctor to prescribe low-dose opioid therapy while you rid your system of dopamine agonists. Good luck.
I was on pramipexole (0.5 mg) when augmentation set in. Doctor prescribed pregabalin (150 mg) to replace the pramipexole. I took 0.25 mg of pramipexole with the pregabalin but still suffered from withdrawal. I increased the pregabalin to 300 mg and also took some oxycodone, and I was able to get to sleep. After three nights, I was able to stop the oxycodone and pramipexole completely. I then reduced the pregabalin to 150 mg and had no symptoms of restless leg!
The bad news is that I developed edema (swelling) in my feet and lower legs and gained 25 pounds in weight. Doctor reduced the pregabalin to 75 mg, which seems to have reduced the swelling a little. With the lower dose I do have some very mild episodes of restless leg, but they are infrequent.
I am trying to persuade the doctor to prescribe methadone to replace the pregabalin, hoping then that the edema will subside.
Hi, part of what you say is encouraging but sorry to hear about your edema. Is it pregablin that is prone to weight gain? Was the weight gain caused by the edema or did you find you were eating more?
We don't know for certain yet, but the doctor thinks the pregabalin is causing the edema (and some of the weight gain due to the fluid that is causing the swelling). Peripheral edema and weight gain are listed as possible side effects of pregabalin.
You might want to try switching to gabapentin. Although they are basically the same drug except you 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. Multiply the pregabalin amount by 6 to get the correct dose. 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. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
Pregabalin is more likely to lead to weight gain than gabapentin.
I have had success switching from Pregabalin to Gabapentin and no edema now, no morning brain fog, no hyper-sensitive skin, better energy levels. Good luck!
Hi. I am in Scotland. I was on Pramipexole for over 20 years and hit augmentation on a regular basis. I would switch to Codeine for a week and it would 'reset the clock' and I would be back on pramipexole for another 2 months before augmentation set in again. Eventually nothing worked well and I stopped the Pramipexole. Big mistake. My Doctor had no idea you shouldn't do that. I entered into DAWS - a documented syndrome which follows cessation of Dopamine agonists like Pramipexole. I fell into really bad depression and anxiety. I learned from my own research that Pramipexole damages the dopamine receptors in the brain and it can take a few months or years for them to recover and start working properly again. So if you find your mood dipping, know it may be this. 2 years on I am feeling well again - it has been a tough road but that medication is a nightmare. Looking back I can now see how up the wall my emotions were while I was on Pramipexole. I had no control over my emotional triggers. It is good you are getting off it! My own experience was that neither Gabapentin nor Pregabalin worked after stopping Pramipexole - apparently that can happen. I took Kratom for a short period to deal with the rls and then by chance was given Tramadol and its amazing. Zero rls every night. Insomnia is a problem but I take Trazadone and that helps. Since neither Gabapentin nor Pregabalin worked for me, the only options were opiates - similar to many members of this forum. We are routing for you as you begin this journey. Take care and all the best.
Thank you for sharing! My homeopath told me to take passionflora which I have taken for 2 nights now instead of codeine and I have had two long stretches of sleep (2.5 hours) each night which I haven’t had for ages so maybe this is an answer for now. Total sleep 7 hours which is good going for me. She also recommended rhodiola herb for dopamine damage.
Hello, im always interested in herbal suggestions, so i did a quick lookup on Rhodiola use. I found this statement intriguing for RLS possibilities: "Rhodiola is thought to have stimulating effects on the central nervous system. This in turn can help boost neurotransmitters, such as dopamine and serotonin, while also increasing concentration". If it could help dopamine receptors that's great. Are you currently taking it? Does it over stimulate you or are you able to sleep well? And I take Gabapentin so not sure of what if any interactions
Mmm interesting, it does say on the packet to take it before lunch and before breakfast so sounds like not advised to take before bedtime, i don’t take it at night. I am finding the passion flower seems to be helping to give me a good 2 hours sleep beg of the night but then it’s back to my normal broken sleep the rest of the night. Could also be the magnesium but have only had that length sleep duration since I started with the passionflower
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