On pramipexole for less than a month minimum dose went off having withdrawal symptoms

[Busyleggs77]

Hi all, so I have mild to moderate RLS, went on pramipexole (minimum .125 dose) for about 3 weeks, started causing racing heart and anxiety after 3 weeks so went off it two days ago. First night was fine, last night started up at 2pm and had a rough night. Got about 4 hours sleep. Heart is back to normal though which is the most important thing. How long do you think it will take to get back to normal considering I was on it such a short time and minimum dose? I am glad I got off it so early after reading about all the problems people have had with this drug. I considered tapering to .6 but the heart issue made me just stop altogether.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

It might take a few weeks to settle.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

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, 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. 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 your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Ask your doctor to prescribe gabapentin or pregabalin which is now the first line treatment for RLS. 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...

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, oestrogen (estrogen) including HRT, 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.

[Busyleggs77 in reply to SueJohnson]

Thanks for the quick reply and helpful information! I have had my iron checked and was told the levels are excellent, this was through a standard blood test. I hope it takes a lot less time than " a few weeks" to settle. Seems like it should go back to normal faster since I was on it such a short time and the lowest dose...

[SueJohnson in reply to Busyleggs77]

The normal blood tests may test iron but it is the ferritin the matters so ask if it was tested and what it is if it was. If not you need to have it tested as I gave you above.

I hope it does settle faster but since you came off it without tapering first which I certainly understand it probably won't.

[Busyleggs77 in reply to SueJohnson]

I was already on the lowest dose and the pharmacist said just go off it. The heart stuff freaked me out as it happened at 3am. So I will ride this out, I am just just glad to be off it 😅 Will ask about the ferritin test, thank-you again!

[SueJohnson in reply to Busyleggs77]

That is the lowest dose but the normal advice is to reduce by half of a .125 mg tablet every 2 weeks. And it was definitely right of you to just stop it with the heart racing you were having.

[Joolsg]

Pramipexole has been associated with serious Heart issues, so it's good that you stopped.However, mild to moderate RLS doesn't disappear, so you will probably need further treatment.

As SueJohnson advises, sort out low serum ferritin first, and if it doesn't improve, start pregabalin or gabapentin at night only.

[Wordsworth99 in reply to Joolsg]

Hi Joolsg, do you happen to remember where you read about Pramipexole being associated with serious heart issues. I’d like to read more about that. I was recently told that I have a leaky heart valve and I was on Pramipexole for about 9 years. I’ve not been able to find information about that link yet. Just info for the older dopamine agonists (no longer prescribed).

[Rameau in reply to Wordsworth99]

This is one reference from 2014: ncbi.nlm.nih.gov/pmc/articl...

[Joolsg in reply to Wordsworth99]

Loads of articles. Just put Pramipexole and heart issues into your search engine.

[Joolsg in reply to Wordsworth99]

ncbi.nlm.nih.gov/pmc/articl...

healthline.com/health/drugs...

rxlist.com/mirapex-drug.htm

[Wordsworth99 in reply to Joolsg]

Thanks Jools, I couldn’t open the first link, anyone else?

[Joolsg in reply to Wordsworth99]

No idea why it doesn't open. I copied link correctly.But, you get the idea.

Lots of articles on heart problems and Pramipexole.