I have been on pramipexole 0.18 mg for about 8 years same dose, never changed. Obviously I've read about all the horrors of augmentation on here but I haven't experienced any issues to date, it's working for me the same as it's always done. My question is should I wean myself off it because augmentation is inevitable ( or is it) or stay as I am. I'm a 63 yr old male if that has any relevance. Thanks for reading.
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The answers that you were given when you asked this question 2 years ago were that since you were on a low dose and recognised the possibility and symptoms of augmentation that you might as well stay as you are:
healthunlocked.com/rlsuk/po...
More has come out about DAs and augmentation since your last post, so it will be interesting to see if advice is different now!
I just asked again for more opinions , I guess the more I read on here the more I worry about it. Thanks for your reply.
Yes, it's possible that people may have a different view now: certainly at least one expert believes that augmentation is inevitable rather than just likely...
Have you ever tried missing a dose or two? Have you had a recent test for serum ferritin? Have you eliminated the possible triggers like those listed in the Medications to Avoid section part way down this link?
Know the common dietary triggers?
Thanks I appreciate you taking the time to respond.
(Sorry - was just in the process of adding to my last reply when you saw it...)
Since you are aware of the potential dangers, and on low dose, I would keep going.
Just don't increase the dose if the RLS increases.
As Chris says-- look at all the other causes of rls-- low ferritin, triggers of all kinds, lifestyle etc etc.
Good luck.
I agree with the others. However 3 years ago you mentioned you occasionally got it in the afternoons an in your arms. Did that continue or was it temporary? And the risk for augmentation continues for at least up to 10 years.
The advantage of coming off it now is that you won't have to worry about augmentation and coming off it in the future when you are older. You aren't on the lowest dose although on half of the maximum dose.
You have probably seen this but just in case you haven't: 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.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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 in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and 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.
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, 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.
Yes I did feel it was affecting my arms slightly back then but it seemed to be temporary, I'd even forgotten about it. Occasionally it can start late afternoon/ early evening but as a rule it's pretty much under control as long as I take my pill 3 hours before bedtime. On the odd occasion I have forgotten through being out or something and taken it late as in at bedtime I've suffered badly until it's eventually got into my system after being up pacing around for a couple of hours. Thanks for your valuable info.
Hi there... I should create my own post but wanted to respond to this detailed comment and ask more about iron levels.
I am 33 female and just start 0.25mg of pramipexole two weeks ago. It is working for me but the first week it made me feel pretty awful.
I have had RLS (in my shins) since I was a teen-early 20s, but it was usually a sign of being tired and going to bed was enough.
Eventually it got worse, moved up to my thighs and would not go away with sleep and some of the things you mentioned helped (exercise, diet, baths).
But the last 3 years it has increasingly become unbearable. I have it deep in my hips, up my spine and in my arms. It starts up whenever I am remotely at rest -- at my desk, watching TV, reading, meditating, during massages, in the dentist chair!
I've tried everything you listed -- many types of magnesium, I am fairly active (walks/pilates), I practice yoga and meditation regularly. I do cold plunges and hot baths with salts. I use massage tools, weighted blankets, compression socks. I found antihistamines and melatonin make it worse so I avoid those and other triggers I've identified. I think electrolytes help some, but not enough. CBD does nothing, actual THC / getting high takes the edge off but not for long.
I've been told my iron is fine, but I took a high quality supplement for 3 months earlier this year with no relief either. I just had my bloodwork done again 3 weeks ago and it doesn't look like they tested my ferritin but my transferrin was 2.03 g/L, Transferrin Saturation 0.42, Iron 21.2 umol/L ??? My B12 was fine, but D was low so taking a supplement now. Didnt test the others you mentioned..
Welcome to the forum. You will find lots of help, support and understanding here
First off since you just started .25 mg of pramipexole 2 weeks ago, stop it now. Taking it much longer will cause withdrawal symptoms. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation.
Pramipexole and ropinirole used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. 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).] It will take 3 weeks before it is fully effective. 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 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 at Https://mayoclinicproceedings.org/a...
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Since they didn't test your ferritin when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and 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.
You said your Transferrin Saturation was 0.42. Does that mean 42%?
I'm not sure if 0.42 means 42%, the results chart I have didn't indicate a unit of measure on that one.
I was on pregabalin a couple years ago for anxiety and I didn't like it, I took it for 8 months and the withdrawals were horrible for 3 months as I tapered.
Is gabapentin different that pregabalin?
Thanks for your detailed responses!
You probably came off the pregabalin too quickly. If you come off if slowly enough you wouldn't have had any withdrawal symptoms.
What was it about pregabalin you didn't like?
Let me revise what I said. It is probably best not to just stop taking the pramipexole. Instead cut it in half and take that for a week and then stop taking it. Otherwise you may have withdrawal symptoms.
Also there are safe antihistamines - it is the sedating ones that make RLS worse. Claritin, allegra and zyrtec are safe as is the prescription one clarinex.
I was taking 300mg of pregablin and lowered by 75mg every 10-15 days.
I was struggling with anxiety/depression back then (much better now) and found it wasn't helping and didn't want to be on unnecessary medication. I was thinking it was making me feel foggy brained but that might not have been true. I think my RLS wasn't as bad then.. but hard to remember now.
Thanks for the advice on safe antihistamines. I think some cold medicine makes it worse too so that makes sense its the sedating medication... I bet anti nausea meds do it too.
Ill take half dose of the pramipexole tonight.
I am still not convinced I want to go back on the pregablin route... from the communities I connected with back then, even with slow tapers it is very difficult to get off of it.. but maybe I need to be on it life long anyway.
You should have reduced by 25 mg every 2 weeks which is a lot slower than you did.
You could also try gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.
Got it ya, my psychiatrist at the time told me I didn't need to taper at all but I didn't listen and made up my own taper schedule.
I'll think more on this, thanks again.
If you still have zero RLS night or day, then you can wait until it does start to happen earlier in the day AND THEN get off it.
I agree with the other posters - if it is working it's probably not necessary to introduce changes - except that I'm not sure 0.18mg is actually a low dose. I understood that O.088mg pramipexole (ie half your daily dose) is the recommended maximum daily dose for RLS. for this reason, I would echo the advice to keep your serum ferritin high. I recall reading a study some years ago that found a link between low ferritin serum and augmentation - though have not been able to find it recently.
You should also be vigilant as to the possibility of impulse control issues which can present in unexpected ways (eg internet shopping for second hand goods) and also for sudden sleep onset.
Good advice many thanks
No .088 is not the maximum dose. Four of them would be the maximum dose. So Enable is on half of the maximum dose.
Enable is on 50% (as corrected by 707twitcher below) of the acceptable max dose for most, unchanged in approaching 10 years now.
From the Mayo Algorithm: "Pramipexole is usually commenced as 0.125 mg once daily, taken 2 hours before major RLS symptoms start. The dose is increased by 0.125 mg every 2 to 3 days until relief is obtained. The acceptable maximum daily dose is 0.5 mg in most patients."
0.088 mg pramipexole (UK) = 0.125 mg pramipexole salt (US)
I've been puzzled by the different pramipexole dosage amounts that I read about here. I finally looked for the explanation: .088mg of pramipexole (pramipexole base) is equivalent to .125mg of pramipexole dihydrochloride (aka pramipexole salt). I believe this is a US vs UK teerminlogy difference - US (including Mayo clinic)seems to universally refer to pramipexole salt form, while UK mainly uses the P base form. So Enable's .18mg is equivalent to .25mg P salt - half of the max dosage.
Good catch, thanks! I just found the following in the British National Formulary:
Dose equivalence and conversion for pramipexole:
Doses and strengths are stated in terms of pramipexole (base).
Equivalent strengths of pramipexole (base) in terms of pramipexole dihydrochloride monohydrate (salt) for immediate-release preparations are as follows:
88 micrograms base ≡ 125 micrograms salt;
180 micrograms base ≡ 250 micrograms salt;
350 micrograms base ≡ 500 micrograms salt;
700 micrograms base ≡ 1 mg salt.
Equivalent strengths of pramipexole (base) in terms of pramipexole dihydrochloride monohydrate (salt) for modified-release preparations are as follows:
260 micrograms base ≡ 375 micrograms salt;
520 micrograms base ≡ 750 micrograms salt;
1.05 mg base ≡ 1.5 mg salt;
1.57 mg base ≡ 2.25 mg salt;
2.1 mg base ≡ 3 mg salt;
2.62 mg base ≡ 3.75 mg salt;
3.15 mg base ≡ 4.5 mg salt.
Incidentally, Dr. Buchfuhrer (rls expert and saint) expresses the view that rls symptoms tend to respond better when treated with more than one pharmaceutical treatment, with each med at a low dose, than to a single medication at a higher dose. You could consider introducing a different medication such as an alpha 2 delta ligand and looking at what happens if you reduce your pramipexole dose when treatment is bolstered by another med.
You would need to consider carefully the how to titrate down on the mirapexin and up on the alternative med - especially as alpha 2 deltas can take a while to make an impact and the reduction in dopamine agonist could result in a temporary significant increase in symptoms.
If it works it works
I was diagnosed mild RLS and mild peripheral neuropathy +/- 15 years ago. I had no symptoms of peripheral neuropathy and if I kept on top of my sleep regime the RLS was managed by just the occasional half 0.088mg pramipexole tab. Over recent years I’ve developed a palpitations sensation in my throat that’s worse when I’m tired. I read somewhere pramipexole has been associated with heart issues but I was told at the dose I was taking it’s unlikely to be the pramipexole. Over the past two years suddenly or so it seems the RLS in my arms and legs is an issue in the evening and when I’m tired. I now take half a 0.088mg tablet every tea time and it keeps the RLS in check. At the same time the peripheral neuropathy has gone from just once or twice a year pins and needles / cold hands and feet to a general decrease in sensitivity all over but in particular my right ankle. Over the past month I’ve noticed decreased sensation in my bowel and bladder and I’m getting hip and and neck numbness and a burning sensation. Outwardly I look fine so it’s no surprise my GP frankly palmed me off as it’s nothing don’t worry. I’ve thought about changing from pram people to pregabalin but with these other out of the blue symptoms that are probably unrelated becoming a feature I’m hesitant to do anything. I thought about asking for a head, neck and spine MRI to rule out MS or the remote chance a pinched nerve but I’m claustrophobic and couldn’t cope being in a regular MRI for more than just seconds. I note the NHS don’t offer general anaesthetic for scans but privately I could if I had a referral get an upright open MRI scan for about £2000. Can I seek your thoughts on staying on pramipexole and if there might be any connection to why I’m suddenly getting the numbness / loss of sensation.
I haven’t seen any posts that I recall connecting dopamine agonists with peripheral neuropathy and as someone who suffers from a degree of neuropathy after a spinal issue I do tend to pay close attention. I can’t help thinking that you might benefit from an MRI to check if you have any spinal stenosis (narrowing of the spinal cord channel) which can increase gradually over time and produce symptoms like yours. I’be had an MRI and it was mainly very noisy but I’m not generally claustrophobic. Pregabalin is often given for neuropathic pain and having tried it myself I decided to cope without as it didn’t entirely remove the sensations and I didn’t like the brain fog (which not everyone gets). My neuropathy wasn’t that bad either. I’d speculate that your RLS is getting worse either because it tends to progress with age or because the neuropathy is getting worse. Either way the pramipexole will help initially unless you keep having to raise the dose which means that augmentation is likely. Personally I wouldn’t be comfortable with the thought that pramipexole was damaging my dopamine receptors and I wouldn’t take it regularly unless I had absolutely no choice and my RLS was unbearable.
Hi VictorMel, that’s interesting that you wrote “…read somewhere pramipexole has been associated with heart issues” because I have recently been told I have a leaky aortic heart valve (mild to moderate). This was most unexpected and I have no idea how this has come about. I have however been on Pramipexol (up to 0.25 mg) for about 9 years. Can you perhaps remember where you read about this?
Enable, my 83 Year old sister-in-law has been taking Pramipexol for 20 years without any augmentation. I don’t know her dose but I am certainly amazed that she has been so lucky! I went through terrible augmentation with ropinirole.
I personally think pramipexole still works for me but I’ve just been googling the NHS website and see RLS can make peripheral neuropathy worse and vice versa. I wonder if my sudden onset of neuropathy is RLS related and if a change from pramipexole might help. I spoke with my gp last year who suggested I try pregabalin but at the time I thought don’t upset things given things were mainly stable. Somethings changed.
The advantage of coming off pramipexole and switching to pregabalin is that pregabalin is used for both RLS and for neuropathy so you are killing 2 birds with one stone. I don't know about all your other symptoms and you might want to try and get them sorted out first. However here is the advice I have for when you are ready to switch.
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 [.125] 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.
Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) 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 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 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)."
Have you had your ferritin checked? If so what was it? This is the first thing that should be done 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 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(salt), foods that cause inflammation, ice cream, eating late at night, 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
A question for the experts. While many are saying that Enable can stay on his Pramipexole dose as long as it is working, shouldn't he be concerned about damage to his dopamine receptors? After all, down the line, damage to dopamine receptors by a dopamine agonist could increase the possibility that pregabalin or gabapentin will not be effective.
Good point!
Is damage to dopamine receptors by a dopamine agonist really a thing? I would like to read a study about it if anyone has a link.
It's real. Dr Buchfuhrer who is a world renowned expert has said that and it is mentioned in Fall 2021 Nightwalkers the RLS Foundation monthly magazine. And it has certainly been the experience of many on this forum. I don't have any studies on it.
If pain and misery are the likely outcomes of present actions then the rational thing to do is to change your present actions. Everyone here can tell you about the pain of augmentation and the misery associated with DAWS. I suffered the pain of augmentation as a result of pramipexole and now am dealing with the misery associated with DAWS. If I had known four years ago what I know today, I would have micro tapered from pramipexole back then.
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