I'm a 65 year old female in Norfolk in the UK, with hereditary RLS for which I was prescribed X1 every evening 0.088mg Pramipexole some 10 (possibly?) years ago. A year ago I had a single mastectomy, am on Anastrazole oestrogen suppressant hormone treatment and a Calcium/D3 supplement for that, along with Lisinopril and Indapamide for high BP, Atorvastatin for high cholesterol and Cetirizine and Beconase spray for seasonal rhinitis. My RLS and in particular the insomnia has worsened over the last 18 months but particularly since I began my cancer treatment. I told my Dr that my RLS symptoms were beginning earlier in the day and also had started in my arms and body - his reply, "Oh, just take another tablet if that happens." I did, just the once but felt uncomfortable doing so as was unsure if it was the right thing to do so am still taking just X1 0.088mg at about 6pm each evening. I was talking to my daughter in Canada about the worsening RLS symptoms and she sent me this link bbc.com/reel/video/p0bvy1j0... which then thankfully made me aware of your group! Yesterday I saw a different Dr with a view to coming off Pramipexole in favour of something else. She had no clue about RLS and I explained Augmentation and Dopamine Agonist usage. She agreed that if I wished to come off Pramipexole I must do it gently but basically said, "Can you cut them in half and reduce over several weeks?" She's arranging (at my request) a full iron panel and she also suggested a B12 check, both of which I will have in 2 weeks' time. Last night I cut my Pramipexole in half, with a view to taking 1/2 one night then X1 the next for a fortnight, then gradually reducing as she gave me no plan. She didn't say when I could begin an alternative, or what that should be although I mentioned Gabapentin and Pregabalin to her. After an horrendous night of no sleep and dreadful legs, arms and body, I'm thinking I'm going to need to do this far more gently than my original plan. Any suggestions please? I'm sorry for the length of this post but hope I've given sufficient background information, if not hopefully you'll ask for more! Thanks in anticipation!
Coming off Pramipexole : I'm a 65 year... - Restless Legs Syn...
Coming off Pramipexole
Normally to come off come off pramipexole you would reduce by one half a tablet every 2 weeks or so. Doing it every other night is counter productive. Do it every night. You will have increased symptoms. That is normal. You may need to reduce more slowly or with a smaller amount. If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. 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. 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. 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 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. 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) daily."
Sue, I am just starting my taper and confused how much and how fast is the safest way. I suffer from depression so mostly worried about that getting worse. This drug was used to try and help the depression and very minor rls with no good results.
I am on .50mg and was thinking I would cut 0.125 every 2 weeks? My dr gave me a script of .0125mg so I would take 3 now and drop to 2 in 2weeks and so on. Is this ok or am I going too fast?
I also take .25mg klonopin and 7.5mg Remeron with the Pram at night so I am highly sedated and sleep fine but have horrible fatigue and sedation the next day. I plan to get off all three drugs but dr said to start with pram since it has not been of any help with my depression. Thanks!
Reduce by one half of the .125 mg tablet.
You are taking some medicines that can make RLS worse for most. All statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Indapamide is a diuretic which is often used to treat high blood pressure. Unfortunately all diuretics make RLS worse for most and there is no safe substitute. Estrogen and anastrozole also make RLS worse but you need those.
Are you taking any OTC supplements. Some of those can make RLS worse too. If you list them I can check and if so may be able to provide a safe substitute. Your claritin and nasay spray are safe.
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 including HRT, 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, using a standing desk, listening to music, meditation and yoga.
Do post back here when you get your ferritin and TSAT (transferrin saturation) results and we can give you some advice.
Thanks Sue for all the information. I'll bear it all in mind and key you know my ferritin results in due course.
I agree with SueJohnson. Your GP will know zero about RLS. The negligence out there is terrifying. The doctor who told you to increase has no knowledge at all.Follow SueJohnson reduction schedule. You will probably need a low dose opioid like Oxycontin or tramadol to settle the withdrawal with each dose reduction.
Your GP should sort replacement meds now so that you are on them when you drop the last Pramipexole.
Pregabalin or gabapentin are the usual replacement meds. Look at RLS-UK website and the chart with meds ( doses and times) is set out.
Once off Pramipexole, the RLS does become extremely severe for 2 to 3 weeks but stick with it. The RLS will settle.
If raising serum ferritin above 100, preferably 200 doesn't help and pregabalin doesn't cover your RLS, a long lasting low dose opioid like methadone or Buprenorphine may be required.
RLSUK has been trying to get the medical profession to learn about RLS and the dangers of Pramipexole and Ropinirole for years.
Thank you Joolsg. It's terrifying when you're in the hands of doctors who don't understand the condition and how detrimental it is to daily life and more to the the point, show no interest in researching the problem in order to try and advise. Thank you for this group and its efforts and the comfort folk have already given me that there can be light at the end of the tunnel (which isn't an approaching train!)
LOL about the light at the end of the tunnel not be an approaching train.
I too live on Norfolk UK and have suffered from RLS for 40 years. I was given ropinerole 6 years ago. As the symptoms worsened the dose was increased. I started taking CBD and reduced the dose of ropinerole down to 0.5mg. The symptoms began to get worse again. After joining this group I persuaded the GP to give me gabapentin. The GP was not happy about this but I insisted. My ferritin level is 70 but he insisted this was normal. I have written to the head clinician bringing RLSUK to her attention and begging her to take note of the new research. I am not out of the woods yet but the more of us who write to our Surgeries with our horror stories might help us all. Good luck and I hope you get some relief soon.
Feel your pain Tryffan1. You're absolutely right about the need to put pressure on our GPs. I'll be writing to my surgery. Good luck in your endeavours too, hope you find something that works for you. 😊
I've heard back from surgery. Some very positive comments. RLS UK leaflets will be put into our surgeries. No luck with ferritin levels yet but they are going to look into it. They've asked me to be a patient champion. Not sure what this involves, but if I can help fellow sufferers it can only be a good thing.
That's fabulous! Well done you! If we can all do the same, hopefully Dopamine Agonists will be withdrawn as treatment completely. I'm intending to speak to my Cancer nurse on Monday (today is the first anniversary of my mastectomy surgery! Yippee! Lol!) before attempting any Pramipexole withdrawal to see if my hospital will take this up too and it will hopefully give extra clout to any further dealing with my GP surgery.
oo ,k ni okshelprt ensifrol
Please translate into english.
niks helpt.sifrol enp ramipexolge sliktben ua an hen atfbouwen.dokters in neNederlan weten er ook ikns anv Heb nu inhibin helpto ok niet.tijd dat ze he. tondreezoeknin iekenhuis.sirieus probleem hebzhet 54 jaat.un
Please translate into english
Also file a report via the Yellow Card Scheme. GPs will keep doling out dangerous dopamine agonists until enough of us report severe worsening of RLS symptoms.yellowcard.mhra.gov.uk/
Best of luck to you. I too take .o88mg at night. It works most times but occasionally not. I've been told (by my doc) that it's an extremely low dose and could take more, but I don't want to. Anyway, I said in a previous post that I'm trying some pot cookies in the evening and I THINK that's helping. I need to give it more time to know for sure. Are you in a position to try that? Good luck
Hi GreyMaus
Sorry to hear you are having all these RLS problems.
I too live in UK and only joined this group recently who have been so supportive and helpful. It's a lot to get your head around and one size doesn't fit all unfortunately. I haven't added an updated post yet but basically this is what I did as my RLS was out of control day & night and getting worse. It doesn't help as I have had iron deficiency anaemia since Feb'23 due to another condition I have.
Resulting from advice from SueJohnson & Joolsg I did the following:
- I cut out daily collagen supplement, alcohol, sugar (both of the later I have very little anyway)
-Appt with GP, who is one of the very rare understanding ones, to get ferratin levels and full bloods done. I knew that my haemoglobin was really low but ferratin was 4 which is also really low. A prescription for 75mg pregabalin and a paracetamol/codeine painkiller (Zappain or co-codamol). I find codeine really helps with the RLS whereas other painkillers don't.
- The next day I cut my 0.088mg pramipexol in half for one week taking half every evening along with painkillers every 4 hours and 75mg pregabalin before bed.
- 2nd week I cut the tablet into quarters and took quarter every evening along with 4 hourly painkillers and 75mg pregabalin before bed.
- 3rd week , no pramipexole just pregabalin and painkillers. I learnt that if I take the pregabalin at 5pm then I'm not drowsy the next day. If I take them any later then I cannot concentrate the next day until around midday. This will be different for everyone so you need to work out what suits you.
- 4th week my RLS started to improve and little to no pain during the day. I'm still experiencing it during the evening and getting up in the night to take painkillers so will now increase the pregabalin to see what effect that has now that the pramipexole is out of my system. I just need to work out the balance.
Unfortunately in the UK we operate by the NICE guidelines which puts pramipexole still as the lead drug but they still have pregabalin & gabapentin within the guideline so you should not have any problem getting these prescribed.
I have introduced the social alcohol and the odd pudding back to my diet and this is not having any negative effects but it was good to cut out things and reintroduce them back slowly to see if any of them exacerbate the RLS. Collagen supplement is next to reintroduce.
In a nutshell pregabalin and co-codamol are my new best friends!
Sorry this has been a long read but all details are hopefully helpful at this stage. Good luck!
Thanks samd5555. That's all very helpful. I'm pleased that Pregabalin along with Co-Codamol are working so well for you. I may well ask my Dr for Pregabalin as opposed to Gabapentin as several folk seem to tolerate that well and find it effective. I'm fortunate in that I don't get RLS symptoms during the day, mine come on early evening so although I've not tolerated Co-Codamol for any pain relief during the day in the past (it makes me really spaced out!), I'd give it a whirl at bedtime if it'll help with sleep whilst coming off the demon Pramipexole. I do have some Paramol which is a paracetamol/dihydrocodeine combo (which my pharmacist said would be safe for me to take along with all my other concoction of drugs) at night time to help with a recent wrist injury so that may well be of help too. Good luck with the reintroduction of your other things, it sounds all pretty positive for you so far which is great! I have hope! 😊
You could also try solpadeine max which you can buy otc for pain relief. They are slightly milder than co-codamol but are a paracetamol/codeine mix. Anything is worth a try I guess.
Thank you! More great advice. Whatever would we do without this Forum?! Regardless of the medication stuff, it's just so good to talk to folk who actually understand what you're going through and don't just say, "Oh dear, that sounds nasty", and change the topic of conversation!
That's great !!! So pleased for you.
Thanks, and your help was so gratefully relieved.
Some people can get off pramipexole by simply using the pills but others will go into pure hell trying to get off the stuff. But we recommend a couple of things: first of all find a neurologist who really knows about movement disorders. Secondly before you start your pramipexole taper make sure you are on something else that controls the RLS like gabapentin or pregabalin or Horizant. If you find you are having any kind of discomfort when withdrawing from pramipexole you should ask your physician to write a prescription for a compounding pharmacist who can turn the pills into a liquid so that you can use a micro taper to get off the stuff. The idea is to withdraw infinitely small amounts every night so that your brain doesn’t miss the stuff. Pramipexole is a potent dopamine agonist – a neurotoxin! I tried getting off the stuff just by cutting pills but was in such a pure state of hell that I am now micro tapering from the stuff and I should be off in maybe a year but in the meantime I am on Horizant which is controlling my RLS.
Hello GreyMaus, very sorry to hear about the additional stress caused by the RLS. I recently saw a new Dr. who prescribed a new med for my RLS. I've had the condition for 24 years and decided I need to stop using Dopaminergic therapy. I've never used any of the benzodiazepine class of drugs before. She prescribed Clonazepam, an anti-seizure, anti-anxiety medication. I'm using .25mg for the first week but will increase that to .5mg next week. I've had three nights of uninterrupted sleep and it's almost scary. Can this be the answer to my problem? I'm using .5mg of Pramipexole but will cut that in half tomorrow night to see if it makes a difference. It only takes about half an hour and I can feel drowsy, relaxed and look forward to bed. Ask your physician about it.
Clonazepam helps with sleep but not with RLS. Be aware that its half life is 40 hours so you are likely to suffer from sleepiness the next day.
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 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, estrogen including HRT, 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.
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.
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