Hello, firstly thank you for your time in reading this.
Just to begin with the basics:
I’m on .35mg Pramipexole, and I first starting taking Pramipexole (starting with the initial dose and increasing over the years) about 8 years ago. I am in North Yorkshire, UK.
As I don’t know my iron levels, I have ordered an at-home iron test to send away to a Lab as the wait time at my GP to talk to someone is 5-6weeks. I have only been taking a regular multivitamin over the years and the amount of iron is 14mg in a pill. I have never been asked about my iron levels by a GP and didn’t even know about it myself until I started reading about it on this site, and on “The Management of Restless Legs Syndrome: An Updated Algorithm”. This site and the article were both very helpful. Thank you to everyone who posts such helpful information.
I would like to come off of Pramipexole completely as augmentation is definitely occurring. I once tried to come off cold turkey as I had no idea you needed to taper, and the withdrawal symptoms were unbelievably hellish. I would like to taper properly this time around.
I have read lots of posts on here but am still a little unsure regarding my specific dosage as to how much I should reduce over what time period. Could someone kindly help with this, and do I need to try to ask my GP about prescribing me an opioid? I don’t have a lot of faith in my GP unfortunately. I can get co-codamol from the pharmacy if that is sufficient for treating the pain while I taper off? It is 8mg codeine phosphate / 500mg paracetamol per tablet. I’m not sure if that is too little codeine to be effective. I’m also not sure how to manage ongoing pain once I am eventually off Pramipexole, if iron deficiency is not the cause or is not sufficient to get rid of the pain. It’s worrying as I’m sure RLS sufferers understand all too well.
I do have a jewellery scale already so I could use that to measure my Pramipexole doses.
Thank you.
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WildgardenChi
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Welcome to the forum. You will find lots of help, support and understanding here.
You may have seen my posts but in case you haven't let me repeat what I have said.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
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 or you may be able to reduce more quickly. 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. The codeine is a low amount. You can take two of them, but no more since that would be too much paracetamol.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They 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. You probably know that from reading the Mayo Algorithm.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 you are off pramipexole for several weeks 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)."
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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, C, 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.
when you get the results from your iron tests post them back her and we can give you some advice.
What city do you live in. We may be able to give you the name of a knowledgeable doctor.
You have clearly been reading up on RLS. Keep doing so. As you realise, UK doctors know very little about the disease or how to treat it. And they definitely do not realise how dangerous dopamine agonists are.To reduce Pramipexole, print off the withdrawal schedule on the RLS-UK website, under Useful Resources. There's an iron therapy page as well.
First switch to normal release Pramipexole. Then Reduce by half a 0.088 ( 0.125) pill every 2 weeks. You will need an opioid to settle the withdrawals at each dose reduction. Solpadeine will help a little, but ideally you should get tramadol 50mg, codeine 30mg or oxycodone 10mg.
You do need a FTF with the GP to get the full iron panel blood tests. The NHS and NICE guidance require this.
You should also tell your GP that he never warned you about augmentation or Impulse Control Disorder and that hundreds of GPs have been successfully sued for failure to warn about gambling etc.
If you can't get a FTF, write a detailed letter asking for the full panel bloods. Explain that you are experiencing worsening of RLS. Caused by Pramipexole. And that you will need an opioid to settle withdrawals and pregabalin to start as a replacement medication around a month before the last dose of Pramipexole.
And read the RLS-UK site and attach aunk so the GP can learn about augmentation and withdrawal.
Thank you very much to the both of you, a lot of helpful information. I am on regular Pramipexole, not slow release.
Regarding impulse control, I noticed that gambling has an allure that it never had before. Thankfully because I became aware of the potential for gambling addiction ( GP never mentioned anything), I don’t allow myself anywhere near anything resembling gambling. What a dangerous drug with the potential to wreck people’s lives…
I’m scared to try Gabapentin because of the side effects, particularly dizziness (I already have vertigo), weight gain, depression, and anxiety, all of which are problem areas for me. I’m wondering if it’s possible for me to see what I am like once my brain has a chance to repair the damage of Pramipexole, although I’m not looking forward to the hellish journey to get there…
I will try to keep this updated in case anyone else is interested in how this journey goes and might glean some help for their own struggles.
I have not been on this .35mg dose for long (6weeks or so), it was recently upped from .18mg. I am going to see if I can start with 3/4 of a .35mg pill for two weeks and see how that goes, before tapering down slowly by .044mg, I think this will take around 12 weeks.
The most surefire way of safely getting off pramipexole without going into horrendous withdrawal and ending up on an opioid is to micro taper. I’m not familiar with dosages in the UK but nevertheless the same theory would apply. In the US the smallest dosage of pramipexole is a 0.125 mg tablet. You must be using some other dosage in order to get to 0.35 or perhaps you have already figured out some other way of getting from 0.375 mg down to 0.35 mg.
The way you micro taper is that you take the solid pills that you get from your local pharmacy to a compounding pharmacist. You may not have heard of compounding pharmacists or, for all I know, maybe every pharmacist in the UK is a compounding pharmacist as they would have been in the United States 70 or 80 years ago. Ultimately the compounding pharmacist will take the solid pills and reduce them to a liquid so that you can withdraw minute amounts each day thereby tricking the central nervous system into not noticing the loss.
If you are interested in doing it this way I would be happy to work with you outside the group so that we can tailor the mathematics just for you and you can give the information to your physician who will then write the proper script for the compounding pharmacist.
Equivalent strengths of pramipexole (base) in terms of pramipexole dihydrochloride monohydrate (salt) for immediate-release preparations are as follows:
88 micrograms base (.088mg) ≡ 125 micrograms salt;
180 micrograms base (.18mg) ≡ 250 micrograms salt;
350 micrograms base (.35mg) ≡ 500 micrograms salt;
700 micrograms base (.7mg) ≡ 1 mg salt.
——
I had come up with the following tapering schedule, I’m not sure if it’s micro enough. I happen to have both .35mg pills and .18mg pills which is why it’s like this.
Each step last 2 weeks.
Week 0 (.306mg) = 3/4 of a .35mg pill (.2625mg) + 1/4 of a .18mg pill (.045mg)
Week 2 (.262mg) = 3/4 of a .35mg pill (.2625mg)
Week 4 (.218mg) = 1/2 of a .35mg pill (.175mg) + 1/4 of a .18mg pill (.045mg)
Week 6 (.174mg) = 1/2 of a .35mg pill (.175mg)
Week 8 (.13mg) = 1/4 of a .35mg pill (.0875mg) + 1/4 of a .18mg pill (.0425)
Week 10 (.086mg) = 1/4 of a .35mg pill (.0875mg)
Week 12 (.042mg) = 1/4 of a .18mg pill (.045mg)
—
However I’m thinking of skipping straight to week 2 as last night I took 3/4 of a .35mg pill with only mild discomfort. My sleep was disturbed though, waking every 2 hours or so, but in the end I still managed enough sleep overall. I didn’t take any opioids with it.
I like the idea of being able to use a liquid for precision but my GP appointment wouldn’t be for 5-6 weeks, as they don’t consider this as an emergency. The NHS system here is crumbling…I’m still grateful for it but it’s really not in a good state.
That's ambitious. 0.375 is quite a high dose and experts recommend at least 6 months to reduce. The withdrawals are usually fine until you get to the last 0.125mg pill.Best to prepare, as most people have hellish withdrawal after dropping the last dose. Arrange at least 2 weeks off work/social occasions.
I’m a bit confused because on the rls-uk website it says for the tapering schedule:
“Pramipexole
First switch extended release pramipexole for the equivalent dose of normal release pramipexole and reduce by half a 0.088mg pill every 2 weeks.”
That’s how I’ve come up with the schedule I have, by reducing my dose by .044mg every two weeks, which ends up with the final dosage at the 12 week mark. However I’m unsure how long to stay on this final dose for. As you mentioned Joolsg it earlier says on the rls-uk site:
“Slow Withdrawal
Most RLS experts recommend a very slow, tapered withdrawal. If you have been on high doses of DAs for several years, the top US experts (Drs Buchfuhrer, Berkowski, Winkelman and Ondo) recommend a slow withdrawal over at least 6 months.”
Does this mean I should stay on the final dosage for 3 months or am I misunderstanding something about the tapering schedule?
Hi. I can't advise but can say what happened with my Pramipexole. My psychiatrist said she had no experience of dealing with RLS, so left it to me. I reduced, then stopped the Pramipexole abruptly and have been paying a heavy price in symptoms. Pain, cramps, tightness all day in calves and thighs. Terrible nights..
I paid to see an excellent neurologist privately in Bristol UK yesterday. She sees lots of RLS people in her NHS practice and a few privately. Apparently I'm right at the top 2 or 3 % for severity. As of yesterday, I started Gabapentin 300 mgs, 1 a day, increasing slowly. And Tramadol 50 mgs , 1 an hour or so before bed. Will get reviewed later. So far the severity has reduced a little, thank you all you gods. Hoping for more!
Thanks for your reply, I’m sorry to hear of your suffering as I experienced that as well when I went off Pramipexole abruptly in the past. It’s terrible to go through.
May I ask what dose of Pramipexole you were on, and how you went about reducing before stopping? In other words, your general tapering schedule?
I assume you remember about the advice I gave you on how to take gabapentin and how to increase. If not look at the advice I gave above to WildgardenChi.
Your neurologist seems to be really good. There are so few that are knowledgeable. If you could give me her name I could add her to my list in case someone else asks.
Hi Sue and WildgardenChi. I was started on 300 mgs of Gabapentin by the neurologist, with advice to increase slowly, every 5 days if necessary. Also, 50 mgs Tramadol a day. The neurologist is Dr Sabine Klepsch who works for the NHS in the movement disorder clinic in Bristol - and a small private practice also in Bristol. She listened, understood and was extremely knowledgable. Did my homework to find her. So far the new treatment has had a noticeably good effect with minimal side effects. Through April and May, I was taking 0.26 mgs of Pramipexole, originally 2 a day. Never given advice by my useless psychiatrist about stopping or tapering the dose. No advice on RLS worsening or rebound etc.. No advice on impulse control, though I found about this by looking at the patient leaflet, Going down to i a day of Pramipexole and then stopping altogether was horrendous, horrendous. Hopefully life will improve. This is day 3!
Thanks Sue. The new treatment helps me sleep longer, though I feel sedated in the morning. Better than the alternative. (Felt RLS type dozy due to major lack of sleep before this.) My best wishes to you too, and to all others with this debilitating, nasty condition.
Hi WildgardenChi (nice name btw!). My experience with coming off Pramipexole was relatively pain free. I was on it for nearly 10 years and my maximum dose was 0.25 mg per night. I first corrected a low iron level (with an iron infusion) then I tapered over a period of about 9 months.. I made up the schedule as I went along by listening to my body. I used Tramadol for the first days, at each reduction, 50-100 mg.
What also helped was taking decent amounts of magnesium, particularly magnesium threonate which can enter the brain. Once there, it supposedly decreases inflammation and repairs the brain!
I also changed my diet by removing all processed foods, dairy, gluten and alcohol (except on special occasions 😊). I also removed as much stress from my life as possible. Stressful jobs, I’ve found, are usually not worth it. Being happy is very important!
I have now been off Pramipexole for 3 months, Currently I take a mere 30 mg codeine each night and I’m feeling better now than I have in years!
Oh, and I also take iron bisglycinate on an empty stomach if I have break through RLS occasionally (as recommended by DesertOasis), though together with the codeine one must be careful to prevent constipation. I wish you all the best in weaning off the horrible Pramipexole!
Thank you Wordsworth99 very encouraging post! I had not heard of magnesium threonate, the magnesium I have purchased is in the form of oxide, gluconate, and citrate. Doing some research on the theonate form now and it does sound superior. Bah I just bought a two pack of the one I have now 😆
take2aday I’m sure things will continue to improve for you as you have someone knowledgeable to help you to get there. 💐
Well as for me if anyone is interested in cutting down as well…
I’m on day 6 of tapering now, my sleep quality overall is pretty good but I do have some mild discomfort before falling asleep. I’ve been taking two co-codamol (regular strength). I’ve not been taking any supplements as I had to wait until I could complete my iron and overall health blood tests, but I’ve sent those away now. I’ll be interested to see what the results are.
Bit of an update for anyone following…I’m currently on day 8 but on day 6 I began taking iron bisglycinate with vitamin C, and vitamin D in the morning. The following night (day 7) I had no need for co-codamol for the first time since I started tapering.
Today I received the results of my blood test and have discovered that both vitamin D and ferritin are too low. Vitamin D is 65 nmol/L and ferritin is 28.3 µg/L. From my understanding, people with RLS should have a minimum ferritin of 100 µg/L, with 200 being preferred. For vitamin D, 75-100 nmol/L is beneficial.
Am I right in thinking I should take approximately 80mg iron every other day to raise my ferritin levels? I am taking it in the form of iron bisglycinate. I do take it on an empty stomach at least 2 hours after eating, and with vitamin c.
It’s really a difference of iron “philosophy” on here. I believe, from a lot of evidence, that bodily serum ferritin has little to nothing to do with RLS, unless you’re close to anemia. I believe it has everything to do with something called “serum iron” which plummets at night and we get RLS. If you got relief within a day or two of starting the iron, then trust me, it has nothing to do with your serum ferritin. Give me a second and I will show you a few more examples besides me.
Btw, SSRIs and HRT will make the “symptoms” of RLS much worse then they have to be. Unlike the DAs, these two medications do not down-regulate our already lousy D2/D3 dopamine receptors and may even up-regulate them. Good luck with whatever you decide to do!!!
I am now on day 14 of tapering. I am continuing to take 70mg iron bisglycinate with vitamin c every other day, and vitamin d daily. I also take a calcium/magnesium/boron supplement daily, along with omega 3 and a multivitamin.
I have thus far been able to reduce my original dosage by half, which I attribute to the iron supplementation. I am going day by day and using my body’s response as my guide for when to attempt my next taper. If I am discomfort-free for two nights in a row, then I taper down. So far the only discomfort I have experienced is on the first night of tapering, which 1 co-codamol fixes if necessary.
I’m not anticipating the entire journey will be this smooth as I imagine as I get to very low dose, and then no dose, that will be a different story to what I am experiencing now.
All I can say is that having my blood tested has been game-changing.
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