Hey everyone, this is such a good forum for RLS, any advice welcomed.
I've had RLS since 2019 which conincided with strong perimenopause symptoms, notably poor sleep/anxiety. I had no idea what it was at the time, but after being away on holiday and symptoms suddenly coming on ( 3 nights with zero sleep) I went to the GP in a mess and she prescribed pramipexole which at the time was a miracle.
She never mentioned iron or other markers and so I took the lowest dose of 0.088mg and then a few months later had to increase to 2 tablets - 1 at 6pm and one at 8 pm. I have stayed on this dose for 6 years which is good but I supplement this with a very structured routine, warm shower, massage, vibration therapy, good sleep routine, daily lifestyle is very supportive of the best conditions to keep RLS at bay (exercise/electrolytes/supplements- iron etc/acupuncture /massage etc etc. I am under a sleep consultant where the advice is very very scant so I have undertaken a ton of research myself over the years.
My RLS has got worse but I refuse to take a 3rd tablet, it has no pattern, at times when I've been stressed I've slept like a baby. other times when I have lived like a Saint it been bad. I've noticed daytime symptoms for a long while and night time symptoms into my arms and legs.
I am a PT and women health coach and am adamant to try and wean off this drug. I have had a battle with my GP to get pregabalin but now have it so this is where I need help. I have read that dopamine agonists can contribute to bone fragility, this is something that runs in my family. So over the past 3 nights I have started to reduce my dose, I cut the 8pm pill in half (nightmare, advice on how to do this on the 0.088mg tablet also welcomed, I ground it to a powder last night). I took 1 x 25mg pregabalin an hour after my 8 pm tablet, had symptoms but fell asleep, then woke several times with powerful RLS, I massaged etc but took another pregabalin in the night which helped but generally the symptoms are alot worse in the night. I know its early days but I have a very active job and cant feel this tired, any advice? I have a blood test this week and another consultation in two.
Thanks in advance for taking the time to read this, ps// apparently I may have a family tendency to RLS as my nieces struggle and my grandma did, but that could have been low iron/lifestyle/no HRT etc.
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Shortly, Sue will come along and post her long and comprehensive list of things that can be part of the RLS treatment.
Reading your question, there are two main things. First, your pregabalin dose is low. Generally, people need at least something like 150mg to get relief. Build up slowly, but don’t get any higer until your have come off the pramipexole and the increased symptoms have settled a bit. Check out the Mayo Clinic treatment algorithm: mayoclinicproceedings.org/a...
Second, get a bloodtest for iron. Full panel comprising serum iron, iron saturation, total iron binding capacity, transferrin and -important- ferritin. After the blood test, start taking iron, double standard dose, every other day just before bed. If it helps immediately (hard to assess with unpredictable ocurrence of symptoms), take it every day. Our bodies have good feedback-loop to avoid overdosing on iron, so unless you have a genetic predisposition for iron overload disease, too high iron is unlikely. Aim for ferritin over 100.
It doesn’t seem from your question that you take other meds that may make the RLS worse, but do check things to avoid.
RLS-UK has all this info on its website. Hopefully, you can come off the pramipexole soon and your RLS will settle with more iron and if needed the pregabalin.
Yes I have regular blood tests for all those things but don't take their prescribed iron, it makes me feel crap so I take a high level supplement from a company called nutriadvanced.
I am genuinely confused though as your saying take pregabalin along with the prami as I reduce it, whereas another reply has said dont take it until I've come off pramipexole? Taking double dose iron just before bed is interesting though so I will try that. I personally don't think taking HRT makes RLS worse, there's just not enough evidence and the benefits are huge especially for osteoporosis where we have a family history.
So tyo recap, take higher pregabalin along side pramipexole, would you take this when you take your last pramipexole tablet all in one go before bed, ie with the iron tablets too?
I am not on pregabalin myself, although I tried it in the past after I reduced and stopped ropinirole. I forgot to mention that often pregabalin takes some 3 weeks to become effective, hence you start the pregabalin while still on the pramipexole.
I see that meanwhile Joolsg has given you further information. I second most of the suggestions. I only differ wrt the HRT. I take it too and have been for almost 10years now, and it actually improves my RLS. I do take a combination of estrogen with progesteron. Estrogen without the progesteron can worsen the RLS in some people. But of course people differ in their experiences.
Let me know if you would like specific information from me.
Good morning, I am meeting my sleep consultant tomorrow with my blood test results and info for hopefully coming off pramipexole from here. I have joined the RLS membership and had a load of info too which is interesting. Can I ask if get my iron to 100 (its currently 74) and wean off it, whats the best drug to take post all this for relief. I mention pregabalin but I dont want to be taking tons of the stuff, is there another you can recommend ? I am silently hoping I don't need anything, my RLS literally came on overnight in perimenopause so I am hoping once the iron is sorted it could be a question of keeping it over 100, on my last visit to the sleep person they told me to stay with iron over 50!!!!
You can only try and see. It may settle, it may reduce to a manageable without medicines level, and it may not settle. Also, you’ll have to try what medicine -if needed- works for you. Pregabalin and gabapentin are now first line medicines for RLS, but they do not always work well after you have come off a dopamine agonist like pramipexole. Pregabalin starting dose (25-)75mg, effective dose usually 125-200mg. Gabapentin starting dose (100-)300mg, effective dose usually (900-)1200-1800mg. Gabapentin doses larger than 600mg have to be split and taken 2h apart (see posts/replies by Sue).
If pregabalin or gabapentin does not work, low dose methadon or buprenorphine are the go to’s. But hopefully you won’t need them.
I presume you started HRT at the same time as you first developed RLS?The first line treatment of RLS is to raise brain iron ( by increasing serum ferritin numbers above 200ųg/L) via iron pills or iron infusions. That dramatically improves the majority of cases. At the same time, the doctor should review and safely replace trigger meds.
In your case , your GP failed to raise serum ferritin and failed to identify any meds that may have triggered RLS.
It's likely that stopping HRT ( slowly undee supervision) & raising brain iron would resolve your case.
However- now you have been on Pramipexole for over 6 years and are clearly suffering the most common complication that we ALL will suffer - augmentation.
So you have to get off it. You clearly know the schedule.
Reduce by half a 0.088 pill every 2 weeks.
Pregabalin usually doesn't help withdrawal symptoms. It doesn't start to work fully until 3 weeks on average dose.
We normally suggest starting Pregabalin around 4 weeks before last dose of Pramipexole.
A low dose opioid is better to reduce withdrawals at each dose reduction.
See the withdrawal schedule under Useful Resources on RLS-UK website.
Are you in the UK? If so did your GP warn you that taking Pramipexole had a very high rate of drug-induced worsening? And Impulse Control Disorder?
HI, thanks for your reply. SO the GP told me nothing apart from she had RLS whilst pregnant and understood how awful it was!
Another GP Prescribed has pregabalin but only as I have asked for it to come off, she provided no info on how to do it so I asked the pharmacist, he suggested reducing the second tablet and adding 25 mg pregabalin which on reading all these posts seems ridiculous. The problem is my RLS is so bad in the night I am really struggling to get ANY sleep. Unfortunately I don't have my consultation appointment for another two weeks. The medical profession seem pretty clueless here where I am, yes I am in the UK.
Here's the withdrawal schedule from RLS-UK website.You will need low dose opioids ( 30mg codeine/50mg tramadol or 10mg oxycodone) to take for 4 or 5 nights after each dose reduction.
And time off work after the last dose drop when withdrawals are too severe to be working!
And it is indeed a scandal that UK doctors and pharmacists have no idea how brutal withdrawal can be or how to do it safely.
Also please report augmentation ( severe increase in Severity of symptoms of RLS) via the Yellow Card Scheme.
Unless we all do this- another generation of thousands will be condemned to suffering augmentation.
Jools this is SO helpful and thanks for your private reply. This particular GP is lovely and extremely helpful but said nothing, when I asked to go onto a particular type of HRT 6 years ago, which is now widely known about, she knew nothing about and actually said I knew more. I will use your guidelines to start reducing my pramipexole as I knew feel informed. Will these drugs help my RLS in the night? Since reducing to half of the second tablet I dont have any withdrawal sypmtoms just really bad RLS in the night, thats what I want to stop, thanks so much
The really bad RLS IS the withdrawals.Withdrawal from Pramipexole causes very extreme RLS at all times of day and night and violent leg jerks.
And total lack of sleep. This then causes anxiety & depression.
The low dose opioid will reduce the severity of the increased RLS.
The pregabalin doesn't reduce the severe RLS withdrawal symptoms, so it's better to start pregabalin once you reach the last 0.088 pill.
Pregabalin takes 3 weeks at average dose to be effective. So increase pregabalin to around 125mg/150mg and hold at that dose until a month after your last dose of Pramipexole.
You can then slowly increase if it doesn't cover your RLS.
But- low serum ferritin levels in peri menopause is probably the main cause of your RLS.
And, sadly, HRT is a major cause of RLS.
It didn't particularly worsen my RLS, but there are many reports that it causes RLS in susceptible patients.
First get your serum ferritin levels up.
Then you can consider whether you need to get off the HRT.
I am in the UK. Targinact is a long acting opioid which is licensed for rls in this country. I take a low dose and it eliminates my symptoms. I have no side effects. I know it sounds drastic but I too suffered from augmentation on Pramipexole down to ignorance on the part of my doctor. My current doctor and pharmacist fully endorse the use of the opioid. I also emailed the top guy in America and he is totally supportive. Dr Mark Buchfeuhrer.
I will give you the " long and comprehensive list of things that can be part of the RLS treatment." that Lottie mentioned in a separate reply but it pretty much repeats what she and Joolsg said.
But I do have a few extra comments.
You are suffering from augmentation. 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.
You can use a pill cutter to cut your tablets or 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.
Pregabalin won't do you much good until you are off pramipexole. You can take your pramipexole at the same time as pregabalin.
The mention of taking iron every night was that a few people find that it completely stops RLS for that one night only. You can try it but otherwise take it every night.
There is only 26 mg of ferrous bisglycinate in your iron tablets and you need at least 65 mg to raise your ferritin if it is between 50 and 200 and you need even more if it is below 50. You can buy it separately and it probably would be cheaper than what you are using now. A good multivitamin would provide your B6.
Do see how to take your full panel iron test in my long reply.
Take your iron tablets with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout.Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
sorry Sue, I never acknowledged this. Luckily I took on a nutritional therapist last year and we went through all the supplement side of it, timings, doses etc so thats good, taking it night is a great idea though
Hi Sue, so Ive had my blood tests back and classic GP stuff with no action required so as usual I task myself with what needs bumping up for RLS, my iron ferritin is 74 so I will act on that, Am just checking your email said take at night every other night? or was that the lacto bacillus every other night? Re Vitamin D are there any guidelines re this as I have read articles supporting Vitamin D supplements, but ar there any values attached to this? Also heard this for B vitamins. Thanks Ginny
Yes every other night for the iron and you need 65 mg.
You just need the recommended daily vitamin amounts (google it) unless you have had blood tests that show you are deficient. A multivitamin usually provides this but you can check the bottle and it will tell you the % of the daily recommended amount.
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 if needed.
To come off pramipexole 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. 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,the beginning dose is usually 75 mg pregabalin. Normally you would 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 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. 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(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. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
thanks for this, a clinical pharmacist called me af ew mins ago to chat about my inhalers and I told her about all this, she's asked me to send her all the info and links and she will look into it and get a pathway to come off it with the GP, she admitted she didnt know much about it but was very welcome and keen to help, I will copy and paste part of your message with the link.
I am on HRT oestrogel 2 pumps and utrogestan - 1 tablet, have been on this for 6 years similar time as RLS but had this after my symptoms for RLS started
I am on a fostair inhaler - 1 pump am and pm
Supplements are from specialised companies where I have had advice from a qualified nutritional therapist to support my symptoms so I take vitamin D3 with K2 drops, an algae sourced calcium with Vitamin D and boron/magnesium, plus magnesium citrate 400 mg at night. I have just recently taken British supplements hydrolysed marine collagen for my bones,
Unfortunately the marine collagen will make RLS worse. I learned this the hard way as I too wanted it for my bones. That was when I researched it and learned it makes RLS worse.
I’ll add one thing to the hugely comprehensive advice so far, which is exercise and moderation. Your job seems to be pretty active which generally is good for RLS. I definitely find that 5,000 to 10,000 steps a day, ideally in the morning, helps reduce restlessness at night. However, as a keen cyclist and hill walker I frequently do more challenging activities and there is definitely a correlation between how hard I push either stamina or strength and the RLS which is frequently significantly worse the following two nights. As a general rule if I do enough to get significant muscle soreness and stiffness, then I will get worse RLS, which seems to focus on the areas which have been worked hard. I now try to keep most exercise in the 85% of maximum range which seems to help, and try to make challenging sessions e.g. intervals on hills, shorter and more focused to get the training benefit without totally trashing the muscles. As an older person I read that the advice is generally to train smarter, and with high intensity but less duration which works well to keep the RLS tolerable.
That would be very helpful, thank you. I'll try most things. It's ok for you to post here what has helped you which may also help others, or you can message me directly, up to you.
Yes please tell us what you take post exercise. I too get specific RLS in my feet after playing a few hours of active pickleball. They bother me at night hours later. Thanks and best wishes for you coming off Pramipexole. I did and with the help of a low dose of Tramadol. Now I take a combination of cannabis oil at bed, plus gabapentin and Tramadol. Each person's solution can be unique, as you'll read on this forum.
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Finally, off DA but perhaps not for much longer
Switching from Ropinirole to Mirapexin. 
Coming off Pramipexole 
Rls
Waking up with RLS (need advice—taking pregabalin)
