Janice: I have been on pramiprexol for... - Restless Legs Syn...

Restless Legs Syndrome

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Janice

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I have been on pramiprexol for 10 years and have tried to stop taking this medication but have failed 3 times it was so painful and very frightening ,due to the fact that I didnt sleep for night after night and couldnt keep still, has anybody any gone through this and suceeded in the withdrawal, I would be very gratefull for your help .

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SueJohnson profile image
SueJohnson

Many people have done it. It isn't easy but you can do it too. To come off pramipexole, reduce by .125 mg (.088 in the UK) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. You can cut the tablet in 2 with a pill cutter if needed. If even this is too much you can buy a jewelers scale and shave off a little weighing it. 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. But in the long run, you will be glad you came off it. Dopamine agonists like pramipexole and ropinirole 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). 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. 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 of gabapentin or pregabalin 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 take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily."

If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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. 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 atHttps://mayoclinicproceedings.org/a...

SueJohnson profile image
SueJohnson

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, 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.

By the way it would be helpful if you indicated your sex and the country where you live on your profile so we can better tailor our answers to you.

Madlegs1 profile image
Madlegs1

Many people have successfully got of Pramipexol and other DAs.It is no different to getting off any addiction. Smoking, gambling, drugs or sex.

The secret to success is to send me your bank details and permission to drain your account 😆. (Only joking)

Seriously , the secret is to do it as slowly and by as small increments as your body will tolerate.

I'll say that again

SMALL AND SLOW.

Listen to your body and don't be afraid to tell everyone you are going to be going through a rough time and need consideration.

For Pramipexol, you cut the smallest tablet into 1/4 or 1/3s and reduce the daily dose by that amount. After a week continue downwards . Allow your body and determination to set the pace.

Depending on the dose you are starting at, and for how long you've been on it, it may take a long time.

Months probably.

You could search for Nick the Turks journey on this site.

I also found " Matt Finch" site very helpful , but not for everyone.

Others will come on with advice.

Just don't give them my money!!!😆😆😆😍

Keep in touch and good luck.

Nanpat profile image
Nanpat in reply to Madlegs1

nice to have a LAUGH on this site 😅

Joolsg profile image
Joolsg

Yes. Many people have managed to get off Pramipexole and Ropinirole. Withdrawal is hellish, and involves 2 to 3 weeks of very little sleep and increased, severe RLS.However, if you can stick with it, the RLS reduces in severity once you're off Pramipexole.

As Sue advises, reduce slowly, raise serum ferritin. Ask GP for help.

Low dose opioids and medical cannabis can reduce the severity of the withdrawal symptoms.

Good luck.

Fingerandus profile image
Fingerandus in reply to Joolsg

well well guess who it is fingerandus awake again i upped my dose of sifrol no relief absolute rubbish i thought i was doing the right thing being 80 and maybe not having much time left just take the pills and not care but my RLS are worse and my whole body jumps my arms are now restless i stopped taking lyrica for a month or two but doc gave me a script today for 75 mg nothing works at all x

Joolsg profile image
Joolsg in reply to Fingerandus

I am sorry to hear that. There is relief if you can get off Sifrol/Pramipexole.Yes it's hellish, but RLS settles once off it.

75mg pregabalin ( lyrica) won't do anything until you're off sifrol.

Did you ask your GP for a low dose opioid or medical cannabis to help you through withdrawal?

Fingerandus profile image
Fingerandus in reply to Joolsg

i guess i will try again to come off sifrol the doc asked me if i wanted to stop i have to see her again soon for results of a celiac test i will talk to her to get her help i will cut the tablet im taking now in half thank you x

SueJohnson profile image
SueJohnson in reply to Fingerandus

I gave you this advice once, but as you mentioned you wanted to stay on it, so now that you are receptive, here it is again: To come off sifrol, reduce by .088 mg 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. But in the long run, you will be glad you came off it.

Fingerandus profile image
Fingerandus in reply to SueJohnson

hi yes you did and i was down to a 1/4 pill but as i was trying to come off lyrica too it was quite un bearable and i thought what the heck an d took a higher dose instead but i have had to eat high doses of gluten to do the test for gluten intolerance thats when my legs got worse i will start again and try to get off sifrol heres a little bit of sunshine i am taking delivery of a puppy so will be awake nites for a while anyway xx good luck to me thanks for being there xxx

SueJohnson profile image
SueJohnson in reply to Fingerandus

The puppy will certainly keep you happy 😀😀, busy and distracted so that will actually help your RLS, If that last quarter of a pill is too hard some people get a jewelry scale which is inexpensive so they can shave just a small part of the tablet and measure it, thus reducing even more slowly.

Fingerandus profile image
Fingerandus in reply to SueJohnson

sue if i am taking half of a 0.25 what amount am i taking that is the new dose doc gave me but it makes my whole body jump arms legs everything ....

SueJohnson profile image
SueJohnson in reply to Fingerandus

I'm confused. Are you saying the doctor gave you .25 mg of sifrol and you are taking half of that and you are wondering how that compares to the ,088 mg I mentioned?

Fingerandus profile image
Fingerandus in reply to SueJohnson

i dont know, i went to the doc because my RLS were worse and she gave me a script for sifrol 0.25mg when i was taking 0.125mg is it more or less i dont know what .088mg would be x

SueJohnson profile image
SueJohnson in reply to Fingerandus

.25 is twice the .125 mg. I used .088 because that is the dose used in the UK. However .088 is the same as .125 mg. Since you are trying to come off it, you don't want .25 mg, you want the .125 mg. so ask for that. Since you are having a hard time coming off it I suggest you get a jewelry scale that measures by ,01 gram. They are inexpensive. Only $11 in the US. That way you can shave a little bit off a tablet, measure it and take what's left for 2 weeks or until your symptoms settle and then reduce by the same amount for the next 2 weeks and etc.

Fingerandus profile image
Fingerandus in reply to SueJohnson

thank you Sue i am aiming to see the doctor again this week i will ask for lower dose and some help x

Birdland profile image
Birdland

It is very difficult but can be done. I had been on Ropinirole for 16 years at a very high dose. I tried and failed a few times. But after 3 years of ups and downs I finally succeeded. It was the most difficult thing I’ve ever done. My augmentation was so bad that I felt I had no choice but to persevere. I agree that the slower the better. A low dose opiate can help although I have a difficult time tolerating them.

Hoochybaby profile image
Hoochybaby

hi I went through Pramipexole withdrawal augmentation with Pramipexole and it wasn’t easy to come off it you need to come off the drug very very slowly and use opioids like codeine and a sleeping tablet like zopiclone but like Pramipexole you need to use that drug with care but at least you will get some sleep

Follow the guidance the good people on this site like Sue far more knowledgeable than me

Truthsword profile image
Truthsword

Yes, I know how you feel. Not sleeping night after night. I got help from the Mayo clinic sleep studies Doctors. Combination of Tramadol 50mg and slow weaning did it. Took about 2 months. Was also put in Gabapentin...it has its own set of problems....but augmentation is no longer a problem.

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