Have settled on Pramipexole 0.5mg aft... - Restless Legs Syn...

Restless Legs Syndrome

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Have settled on Pramipexole 0.5mg after going through a large list of drugs.

Clarence1936 profile image
29 Replies

It seems to work pretty well. It makes me a little dizzy and balance is not very good, especially in the morning.

I have been all over the spectrum of drugs and some were pretty bad. Have had RLS for about 50 years and the o.5mg works the best of anything I have taken. Take it at 8:00 PM and go to bed at about 11:00

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Clarence1936 profile image
Clarence1936
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29 Replies
SueJohnson profile image
SueJohnson

You are aware aren't you that up to 70% of people on pramipexole will suffer augmentation which believe me you don't want. It is no longer recommenced as the first line treatment for RLS as a result of this. Gabapentin is. No one should start on this drug so I hope no one reading your post will be tempted to do so.

Clarence1936 profile image
Clarence1936 in reply to SueJohnson

I don't get the augmentation. Please explain what you mean by that. Thanks

SueJohnson profile image
SueJohnson in reply to Clarence1936

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 when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

DreamerTED profile image
DreamerTED in reply to SueJohnson

Hi Sue, First of all thanks so much for your help in understanding RLS. We follow HealthUnlocked regularly. Re: Clarence's question about augmentation from Gabapentin: my husband has been taking Gabapentin since July 2021 after augmenting on Mirapex. He started taking 600 Gabapentin which helped, then went to 900 (split 300 + 600) and is now on 1200 (split 600 before dinner and 600 four hours later). His symptoms are all getting worse and unbearable. The signs of augmentation which you stated above, he has all of them: symptoms starting earlier in the day, more severe, moved from legs to include back, and symptoms now continue all night. The only relief he gets is walking in the night, hence most nights he gets 2 hours/sleep. This sounds like augmentation to us. (10 days ago he had his first iron infusion (living in Ontario, Canada) because his iron levels have been dropping with the latest being 48 - ferrous bisglycinate was not increasing his iron levels) Wondering what your thoughts are. And, hoping Clarence finds answers.

SueJohnson profile image
SueJohnson in reply to DreamerTED

You can not suffer augmentation on gabapentin. Something else must be happening to cause those symptoms. Is he taking any other medications or over the counter supplements? On the gabapentin he should take the second dose at 2 hours before the last dose not 4 hours.

DreamerTED profile image
DreamerTED in reply to SueJohnson

Thanks. Other than magnesium, calcium, vitamin C, iron Bisglycinate, aspirin (had strokes) he is only taking one other prescription drug: Trazodone. Could that be causing this problem? And sorry to be hi-jacking Clarence's feed, but hoping this will help him too.

SueJohnson profile image
SueJohnson in reply to DreamerTED

No, none of those should cause the problems. However I have found one case report where trazodone did make RLS worse so he could try stopping it for a couple of days to see if it helps. If it does there are other antidepressants that are safe for RLS. Or perhaps it is because the iron infusion wore off and his ferritin is now low. Or he might need more gabapentin. If so any additional should be taken 2 hours before his earliest dose which should be 2 hours before his last dose, not 4 hours apart. Also he should take magnesium at least 2 hours before taking gabapentin as it interferes with the absorption of gabapentin. On the calcium he should not take it at the same time as magnesium or iron. Have there been any changes to his diet? Some things that can make RLS symptoms worse for some people are alcohol, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, estrogen, dehydration, electrolyte imbalance, melatonin, and vigorous exercise.

Fingerandus profile image
Fingerandus in reply to SueJohnson

i also believe this is right augamentation comes with pramipexole not with pregabalin i am taking pregabalin to withdraw from pramipexole [sifrol] which i was on for 10 yrs along with rosuvastatin metformin i still take thyroid tablets as i do not have a thyroid gland anymore i am trying to withdraw with just paracetamol and pregabalin [ lyrica ] but sometimes they make my legs worse i am sat here 2 31 am as with most nights i cant lie down i hope Dreamer TED finds some relief soon xxfingerandus

SueJohnson profile image
SueJohnson in reply to Fingerandus

It's the withdrawal from pramipexole that is making your legs worse not pregabalin. I hope you are taking it slow - .125 every few weeks and less than that and more slowly if needed.

Fingerandus profile image
Fingerandus in reply to SueJohnson

hi i have stopped prami [sifrol] cold turkey i am taking lyrica i cant get to see a doc for seven more days if i take a sifrol my legs and arms jump squeeze whatever i cant explain it. i was given lyrica for perifial neuropathy in my toes after radiation killed the bone in my big toe .but not taking sifrol also causes rls so im here awake though so tired if i lay down my legs will start

SueJohnson profile image
SueJohnson in reply to Fingerandus

Stopping pramipexole cold turkey can cause your RLS to get much worse. I would advise you go back up to a dose where it wasn't so bad and then come down slowly. If you don't want to do that then you might want to increase your lyrica.

Fingerandus profile image
Fingerandus in reply to SueJohnson

hi i am feeling fine today but tonight will be hell how and why does it start as soon as i relax into sleep i sit in bed with my book and within 30 mins my legs start i try to ignore them but thats no good i have to get up stand for them to stop how do they know. it must be my brain will it ever stop i didnt use to have it this bad till docs gave me a pill for blood pressure then a pill metoprolol for heart, metformin for borderline sugar. rosuvastatin for preventative cholesterol, RLS got worse so then the dreaded pramipexole but it did work when i first took it .then next pregabalin. now sleep is becoming nil so tamazepam , good but he wont give me more than a month says its addictive and then a small dose codiene cant have that for long its addictive,heres some mirtazipine. ooh legs do not like that only one half and i had to walk all night and that one was supposed to help me sleep so here i am off the pills...take none come off all except pregabalin i hope everything will settle down soon i am a breast cancer survivor .21 years i am 79 this june i will be well by then just got to lose 20 kilos haha xxthankyou for listening x

SueJohnson profile image
SueJohnson in reply to Fingerandus

A safe medicine for RLS to treat high blood pressure is Clonidine. A safe beta blocker, which is what metoprolol is, is propranolol.

Fingerandus profile image
Fingerandus in reply to SueJohnson

hi i only take 0.125 mlgrs of sifrol but have been on it 10 yrs + i find as soon as i take the pill my legs start. goes right up into my bottom and tummy like some ones squeezing then my body jumps even my bowels jump its most disquieting it does even out after a couple of hrs but leaves my arms aching all night my doc says to get of lyrica first, so i am on 50 grms a nite. then he can see which one is causing my body to jump and arms to jerk but i am sure its sifrol it was still happening and i am now off lyrica and i have done hit and miss of sifrol out of 12 nights i have taken 4 nights the last one last night because of depression thru lack of sleep took me until 12.30 to calm enough to go too bed only two more nights until my docs visit.. friday

Fingerandus profile image
Fingerandus in reply to Fingerandus

hi i have such a bad headache runny nose very swollen feet and ankles i think its because i started on 150 grms of lyrica after being off them for a day or so x

SueJohnson profile image
SueJohnson in reply to Fingerandus

Also when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100 and your transferritin saturation to be over 20% but less than 45%. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months.

Fingerandus profile image
Fingerandus in reply to SueJohnson

i also have had this the spots have faded now just leaving like a pair of short socks on

my legs after small vessel vasculitis...
SueJohnson profile image
SueJohnson in reply to Fingerandus

Print out the section in the Mayo Clinic Updated Algorithm on RLS about using a low dose opioid temporarily to help with the withdrawal from Sifrol and bring it with you and show your doctor. Https://mayoclinicproceedings.org/a...

Joolsg profile image
Joolsg in reply to Clarence1936

If you are asking about augmentation it means the doctor who prescribed it has been negligent. He or she should explain clearly the risk of Impulse Control Disorders ( gambling, over shopping, over eating and hypersexuality) AND the very common and high risk of Augmentation. I suggest you read everything now and see another, knowledgeable doctor.If you were on Ropinirole ( requip) before, then Pramipexole is the worst possible drug as it's in the same category.

If you have never tried requip before or the Neupro patch be very wary of Pramipexole and as Madlegs says, you're on double the starting dose. Do not increase ever if it stops working. You get off it slowly and start other meds.

To start Pramipexole in your 80s is a little scary. When augmentation happens, going through withdrawal is hell.

Did your doctor discuss iron infusions and check your other medication?.

Madlegs1 profile image
Madlegs1

By all means go with Pramipexol, but be very aware that you are already starting on double the recommended highest dose for RLS.Also be aware of Sue's comments about potential augmentation.

Do a search on it, and take heed.

Good luck.

SueJohnson profile image
SueJohnson

Have you just started it? If so you might want to consider gabapentin instead which is the first line treatment for RLS. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and refer your doctor to it at

Https://mayoclinicproceedings.org/a...

SueJohnson profile image
SueJohnson

Have you had your ferritin checked?

Clarence1936 profile image
Clarence1936 in reply to SueJohnson

Yes mine is 25 ng/ml

SueJohnson profile image
SueJohnson in reply to Clarence1936

So I assume you are taking iron with 100 mg of vitamin C or some orange juice since that helps its absorption and taking it at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. And if you take magnesium take it at least 2 hours apart since it interferes with its absorption.

Clarence1936 profile image
Clarence1936 in reply to SueJohnson

I take (2) Iron 65 mg (325 mg FerrousSulfate tablets with orange juice. I have been taking it after breakfast but will change it to 1 hour before. I take 100 mg Magnesium Citrate at night. I have taken gabapentin in the past and will ask my doctor about changing back to it.

SueJohnson profile image
SueJohnson in reply to Clarence1936

Why did you stop the gabapentin?

DicCarlson profile image
DicCarlson

You are headed down a VERY slippery slope! All good advise here above - I would back off and consider the Mayo protocol for medication alternatives. And, most importantly - that Ferritin level is painfully low. Oral supplementation with Ferrous Bisglycinate Chelate might be all you need - it was for me - Ferritin 49. I raised it to 105 in 3 months - severe RLS reduced to almost zero!

ziggypiggy profile image
ziggypiggy

I know we are sensitive in a negative way to the use of DAs to treat RLS. Ironically, the same Mayo Clinic algorithm we have all come to hold dear still advocates that there is a place for DAs in the treatment of RLS. They got demoted down a tier but it's not like they have been completely thrown aside. We are in an echo chamber in here and when someone new pops aboard with DA issues we flood them with the information they may need to decide if an alternative is better.

But, for every hard luck story we get here I wonder how many others out there that are doing just fine with their DA treatment and have no need for an alternative.

For nearly three decades they were the go to treatment of choice.

I bet there are some here that are happy with the relief they get from DAs.

Again, why would top experts in the field still advocate their use? Maybe that's a question for Dr. B to answer. I would be curious to hear what he had to say.

LotteM profile image
LotteM in reply to ziggypiggy

I second Ziggy. I wrote a response of the same intend several days ago.

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