I am 78 and have decided to come off my daily Pramipexole tablet of 0.088mg. Diagnosed with RLS one year ago but it would seem that I may, in the past few weeks, be experiencing some form of augmentation taking place.
I do realise how fortunate I am to have a diagnosis so late in life when reading some of your experiences with RLS and how long you have suffered with it.
Just discovered this website which is great. I wonder if anyone can explain the following to me? I have read that RLS is caused by a lack of Dopamine in the brain. Is this now 'old hat' thinking, as it seems that dopamine agonist medications are now not advised.
The new thinking seems to be that low levels of iron in the brain are causing RLS - I am rather confused and would appreciate any advice or explanation anyone can offer. Many thanks, Barbara
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Welcome to the forum. You will find lots of help, support and understanding here.
Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch 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 them but they are not uptodate on the current treatment recommendations. NICE in February changed their recommendation to say gabapentin/pregabalin should be prescribed and not DAs so print that out and take to your doctor
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[.125] 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 gabapentin or pregabalin, 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 withdrawal symptoms have settled. 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 divide the doses on 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."
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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. 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 ferritin and transferrin saturation (TSAT) numbers and reply back here with them. 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...
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 without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, 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.
It is not new thinking that low levels if iron in the brain may cause RLS and that is only true for some not all as they are many causes of RLS.
It is not old hat thinking that RLS is caused by a lack of Dopamine in the brain but dopamine agonists are now avoided by knowledgeable doctors because of the danger of augmentation and ICDs and the danger that dopamine receptors can be damaged so that gabapentin/pregabalin and iron won't work.
I am on such a low dose of Pramipexole at present - one 0.088 tablet daily . GP suggested I stop a daily tablet the first week, cut two days tablets out the next week, three the next week and so on.
I begun yesterday, didn't have a good night, but did get some dream ridden sleep and had some cramping pains. So, will continue usual dose nightly until next Sunday, then cut two nights and so on.
I would value your opinion as to whether you think this is too fast, or just grit my teeth and get on with it
I am not on a slow release Pramipexole. So looking at your first piece of advice on reduction I think it makes more sense to cut the tablet in half and continue on half a tablet until symptons settle down - however long that takes, then stop it completely.
I see some things in your profile that make RLS worse.
All statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce it as fast as the statins, however don't take it if you have diabetes and then there is Bezafibrate (Bezalip) if you are not is the US. Nexlizet combines ezetimibe with bempedoic acid so is better than exetimibe alone. And there is Fenofibrate (Triglide in the US) which seems safe. Berberine may help if it is mildly elevated. 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
Lansoprazole is a proton pump inhibitor and can make RLS worse for many. RLS-UK says PPIs make RLS worse. I suggest instead Gaviscon Advance be sure it is the Advance unless you are bothered by aspartame in the tablets or saccharin in the liquid. Take it 30 minutes after eating and 4 hours before or 2 hours after taking iron. Don't take it within 2 hours of taking gabapentin or antihistamines.
Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods). DAs like ropinirole and pramipexole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism can make RLS worse so want to bring it up
My goodness Sue, thank you so, so much for yourcomprehensive reply. I have been searching for information out there and in one afternoon it has flooded in from you. I will need to read it carefully a few times to start to take this information in.
One thing stood out for me, and that was the information about Lansoprazole. I have been taking that for 20years or more and read recently that it can inhibit the uptake of B12/folate. On my request a blood test was taken and showed low levels of folate. I have since taken daily folic acid tablets, although my GP said she has never heard of this problem with Lansoprazole.
I will definitely investigate the option of Gavisgon Advance which I presume is an over the counter buy. Sorry Sue, this has nothing to do with RLS but all these different medications I take worry me as everything has side effects.
I will also be looking at my Statin medication too
The latest theories are that RLS is caused by dopaminergic dysfunction AND low brain iron.We have enough dopamine but our dopamine receptors cannot uptake the dopamine. And damaged/poorly functioning dopamine receptors cannot uptake iron into the brai.
But these are all theories and much more research is needed.
I find it appalling that you were put on Pramipexole a year ago.
At least NICE cks guidance now places gabapentinoids as first line treatment and instructs doctors to raise serum ferritin via iron therapy.
Useful Resources on RLS-UK website sets out Iron therapy and a safe withdrawal schedule to get off poisonous Pramipexole.
Show your GP and ask for help.
What happened a year ago to cause RLS?
Did you have an operation? Did you catch Covid?
Did you start new medications that trigger RLS?
The RLSUK website has a list of medications to avoid.
Thank you so much for your input Joolsg. I have had evening 'twitches' for a number of years, family joke - 'Mum needs to go to bed!' But it culminated a year ago with two nights of extreme pain and spasms. After the first night I was slurring my words and was unbalanced when walking. Visit to A&E (although I didn't think I had had a stroke) CT and MRI scans clear so discharged by hospital. Scans were checked at a later date by my GP (who thought she might find something they had missed) Symptons gradually went and my GP had put the episode down to a neurological 'glitch', although advised I stay on the statins as my cholesterol was quite high.
On a separate visit around the same time I explained to a nurse practitioner my strange weekend and on hearing about my previous record of 'evening twitching' diagnosed RLS and put me on minimum dose of Pramipexole and told me I could double the dose if needed. I 'googled' Pramipexole and didn't like what I read about it - but it seemed to be doing the trick, and like so like many other people, it seems, just got on with it for the next year - when my RLS symptons increased and I became highly suspicious of it (rightly so, it seems). So here I am - determined to get off it.
Sorry about the long drawn out story - hope you are still awake!!
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