My rls started 11 or 12 years ago and I started taking pramipexole 0.88 around 2021 at first I was only taking 1-2 tablets but my rls was getting worse. I am now taking 6 tablets at about 5pm so when I relax after work I don’t get the rls but it’s now starting to ware off in the early hours of the morning.
I’ve called the GP again today to explain this and he has prescribed me so iron tablets.
im wondering if anyone has similar symptoms as me and would share what they are doing/taking to help with this awful condition.
I have just had a knee operation so I’m supposed to be resting it but by 9am this morning my rls had started so couldn’t rest up. It’s a vicious circle, and just wished they could do more research on rls.
also I have been looking for any clinical trials but with no luck. Thanks for taking the time to read this. Jason
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Welcome to the forum. You will find lots of help, support and understanding here.
You are on 1 and a half times the maximum amount of pramipexole which is 4 tablets and are augmenting. 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.
This means you need to come off it as it will only get worse.
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 .088 tablet)(ask for a prescription of these if needed) 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.
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 but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
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 and your symptoms have settled. 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 or magnesium-rich foods, 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 nor calcium-rich foods 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
hi sue, would I still able to go onto the Gabapentin because I have been depressed in the past and I do have asthma? Just writing out a schedule on the laptop for getting off of pramipexole. Many thanks Jason
Yes. Just be alert to if you have breathing problems since you have asthma. The nice thing about gabapentin is if you find it has side effects you can't stand you can always come off it by reducing it very slowly.
On your ferritin it is important to be tested but while you are waiting since your doctor prescribed iron tablets: If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
If he prescribed ferrous fumerate 210 mg or more that is OK too.
Take it every other day as more is absorbed that way, 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 (or magnesium rich foods), calcium (or calcium rich foods) 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. 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.
By the way the knee operation will cause inflammation and inflammation can make RLS worse which is probably why your RLS is acting up right now. Also if they gave you opioids you will be withdrawing from those which also can make your RLS worse so you should probably wait until things settle down which might take a couple months before reducing the pramipexole.
Just been and picked up my prescription, they have prescribed me 200mg tablets of ferrous sulfate (each tablet contains 200mg of dried ferrous sulfate equivalent to 65mg of ferrous iron, ((Fe,11??)) that’s what’s on the box)
I am taking 100mg of sertraline a day and since my knee op last Friday I am taking 30mg/500mg co-codamol for pain relief.
The doctor did say that my iron levels were low,
My diet is rubbish and I do smoke (4-5 cigs a day and I use a vape) but I don’t drink alcohol , been clean for nearly 2 years. I do like my coffee and probably drink to much which after reading your post I will now cut down.
I will print this thread off so I can study it as I’ve just recently been diagnosed with autism and find it very hard and overwhelming to absorb information.
Many thanks again for taking the time to reply back to me really appreciate it 👍🤞
Sadly most UK GPs know zero about RLS or that Pramipexole and Ropinirole and Rotigitone actually cause severe drug induced worsening of RLS.RLS-UK is campaigning to get doctors educated but RCGPs has refused. You should NEVER have been prescribed Pramipexole in 2021. It has been known for at least 10 years that these drugs worsen the disease..Sadly you can't trust your GP and you have to research for yourself and show the research to the GP. That's the only way to resolve the RLS and get your life back.
Join RLS-UK. Read the website. Read the Mayo Algorithm and the latest guidance from the top experts at the American Academy of Sleep Medicine. The AASM has relegated ALL dopamine agonists to end of life scenarios because of the inevitable drug-induced worsening and the very high rates of Impulse Control DisorderDisorder.
Sertraline and all anti depressants cause /trigger RLS in susceptible patients.
Did you have RLS before you were prescribed Sertraline?
The new treatment is
1. Raise serum ferritin above 100ųg, preferably 200ųg/L via iron pills every other day.
2. Safely replace trigger meds. ( in your case discuss switching from Sertraline to Trazodone or Bupropion).
3. If 2 & 3 don't help, start pregabalin or gabapentin.
4. If 3 doesn't help, start low dose opioids.
In your case, switching Sertraline may have stopped all symptoms.
But NOW - follow SueJohnson advice and get off Pramipexole with the help of opioids and follow her schedule.
Show your GP the AASM guidance and the 'useful resources printable pages on RLS-UK website. They set out Pramipexole withdrawal schedule and iron therapy.
Take the iron pills every OTHER day as it raises brain iron more quickly. But it won't stop the severe RLS which is caused by up regulated D1 dopamine receptors. You MUST get off Pramipexole. Your RLS will remain severe until you do and until you switch to a safe anti depressant.
Thank you for your input I will definitely be doing all of these steps and report back to you all. For once in a long time I can see light at the end of the tunnel, and very grateful for all of your advice.
Thank you for your reply. I don‘t know if I have severe RLS but with no medication at all I tend to wake up every 2 hours…sometimes with self made acupuncture, cold showers I can prolong it and sleep 3 hours. During the day I have almost no RLS just at night only the soles of my feet give me a weird feeling. It seems that the muscle fibers underneath my soles get tense so I wake up but no cramps. I am thinking now of taking medication maybe start with L-Dopa but I am unsure. What do you think?
Absolutely NOT!!! L dopa is a dopamine agonist.The top experts have just released the American Academy of Sleep Medicine Guidance. This relegates ALL dopaminergic drugs to end of life scenarios. They cause RLS to become much, much more severe. It's called Augmentation.
RLS is not taught at ANY stage in medical education so treatment is very poor.
Start with RLS-UK website. Read all you can.
Treatment is as follows:
1. Full iron panel blood tests. Raise serum ferritin above 200ųg/L via iron pills/infusions.
2 Review and safely replace ALL trigger meds( anti depressants, sedating anti histamines, anti nausea meds, statins, beta blockers, diuretics).
3. If 1 & 2 do not resolve RLS, start pregabalin or gabapentin at NIGHT only.
4. If 3 doesn't help, start low dose opioids.
Do NOT agree to L dopa, Ropinirole, Pramipexole or Rotigitone patch. They all cause severe augmentation at a rate of 8% per annum cumulatively. So in 10 years, 80% of patients will be climbing the walls.
Do your own research. Knowledge is power and I guarantee your doctor will not be up to date on the latest research and treatment.
Spend a few hours reading this forum, especially posts headed Ropinirole or Pramipexole.
Hi Joolsg, thanks! I still had pregabalin in my desk but never used it until last week. My doctor gave it to me 1.5 years ago but after reading about all the side effects I put it back where it was. So as mentioned, last week I used it and had mixed results. At 50mg/night I had one good night but the next night same dosage was with several wake ups. Then I upped to 100 mg/night and again a bit better, then again going down again the following nights. I hesitate a bit because I think that I have now symptoms during the day which I hadn‘t. I don‘t like that. Maybe I can cover the RLS or uncomfy feeling in my soles with higher doses but I feel like I blast my whole body with that GABA but I only need to take care of the lowest part of my body. I tried procaine injections before. Procaine is free here. I injected in the hollow of the knee with very good results but the drawback of Procaine is that it only numbs the nerves for 2 hours max.. I just wish they would prescribe something with a longer halftime just so I could sleep longer. It would only locally block the nerves and my sleep would be uninterrupted. Taking pills and shutting the whole body down feels just too much.
My UK GP is very good, Targinact is licensed in this country for rls. It's an opiod and it helps me. tremendously at a low dose. Your GP is negligent to let you take so much pramipexole.
I also take pramaprexle which usually works well I drink a lot water which helps take iron get your iron count up but not to high or it will upset your stomach. I also take magnesium tablet once a day hoping this helps RLS is a nightmare
There is light at the end of the tunnel. My story:
My RLS symptoms began in the 1980s when I was in my 20s. These symptoms became more severe over time. In 2002, I was diagnosed with RLS by a consultant. He put me on a very low dose of Mirapexin (Pramepexole), which I thought was a 'wonder drug' as it stopped all symptoms in their tracks, and I could live a 'normal' life. Of course, I had to increase my dosage over the years until I reached the maximum. Augmentation made my symptoms much worse, and life was awful.
I started taking pregabalin late evening in 2019. It helped me reduce my Mirapexin dose down to one tablet (from five), but it took over three years. I did not suffer any side effects from pregabalin. However, despite increasing pregabalin to way over the maximum dose (575 mg vs 450 mg) I could not reduce my Mirapexin to less than one tablet.
Based on advice from people on this forum I used the Mayo Clinic Algorithm to help convince my GP to prescribe opioids. They worked like a dream! I took my last Mirapexin on 7th July 2024 and returned all my unused tablets to my local chemist – I will never take that dreadful drug again!
As of October 2024, I am taking 25 mg of a morphine sulphate medication (brand name MST Continus 5 mg and Zomorph 10 mg) when I go to bed and have reduced my pregabalin to 275 mg, which I now also take when I go to bed. My plan is to adjust the dose of each medication every 2-3 weeks to see if I can reduce or eliminate one.
In 2017, my ferritin levels were 98 ug/L, which is marginally below the recommended level for us RLS sufferers. I started taking iron supplements every other day after that test. In March 2024, my ferritin was measured to be 160 ug/L.
My quality of life is so much better to how it was up until a few years ago. I can sit and read a book for hours on end - I have not been able to do that for decades. I can watch TV in the evening without having to pace around the sitting room. I still get some mild symptoms. Most nights my RLS wakes me about 1 am and I must pace around for a few minutes. But once I return to bed, I fall asleep with no more symptoms.
I live in the UK and the above was all via my NHS GP.
Just so others reading this won't think of taking so much pregabalin while on a DA - pregabalin won't help much while one is on a DA and really shouldn't be increased while on a DA above 150 mg.
Such a brutal condition, and you’re at a pretty low point with it. I wish you all the very best for a much more peaceful time ahead. Please, stay with this excellent site and don’t give up hope.
Either you have eaten or drunk or you haven't, "not realy" isn't an answer. You say that your RLS comes on by 9 AM. Is that before breakfast or after breakfast?
so, I went to the doctors yesterday and give them some of the literature that I’ve read on here ,she straight away dismissed it and said that it’s a unreliable source and that she wouldn’t be using it! 😭
She admitted she wasn’t a specialist so couldn’t really comment on RLS but she did call the neurologist and explained to him what was happening. In which he replied give him pramipexole 😂😂. She went onto say that this is no longer working for me and I’m taking the maximum dose plus more. Basically they have prescribed me Gabapentin 300mg caps, and they have referred me to the neurology dept at our local hospital which could take months if not years to get an appointment. (Also never said anything about the 100mg of sertraline I’m on!)
I’ve started taking my ferritin tablets this morning with some orange juice. But still unsure now what to do with the whole coming off of pramipexole and started the Gabapentin?
I still have 1 half weeks off of work with light duties for 4 weeks when I return. I’m aware that this isn’t going to be a quick fix. But fingers crossed I can start today with the guidance of you all.
Congrats. My RLS went raging when I went off of suboxone. It has now been managed perfectly for 6 years by my taking 50 mg of tramadol each evening. Something about opiate receptors affects RLS. Hence the successfully use of methadone. The medications typically prescribed for RLS (e.g. Requip) made me sick.
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RLS TEMPORARY STOPPED. 
RLS for life
Can anyone offer some help regarding my Ferritin levels for my RLS please.
Daytime RLS
RLS controls my life
