Needing to get OFF Pramipexole

[lbrosa]

Hi all...I am new and suffer from severe RLS as well as augmentation from Pramipexole...I will follow closely as am VERY interested in the best suggestions for getting off the Pramipexole. I was put on Ropinerole and augmented on it and the Neuro switched me to Pramipexole...I now know I should have been researching these meds myself rather than trusting that the Dr. knew best! I no longer see that Dr. and only have my GP and usually see a nurse practitioner and she is very interested in learning more about RLS and she does research and suggests to me different things I might want to try. I really need to get off this Pramipexole as my RLS is raging day and night and I am not sleeping and have many other symptoms of augmentation. I have been reading many of the entries about RLS and meds and am looking forward to learning more about both. I am so happy to have found this group as no one else understands!

[Hidden]

Hi and welcome!

I can help with natural advice. Would you be willing to hear that? I’m glad to hear that you have a doctor who is willing to learn about this hellish syndrome and try you on new things!

I augmented on Pramipexole in 2015, so I really empathize with what you’re going through! It’s hell on Earth, isn’t it?

[lbrosa in reply to Hidden]

Yes, I welcome any and all advice...sometimes things that work for others do not work for me! Thanks Jess

[Hidden in reply to lbrosa]

Ok, here is a list of what I have done in the past/still do when I have a bad leg (s) night.

Not everything works all the time.

-Magnesium oil

-Magnesium tablets

-Epsom salt bath

-Heated massage (hand-held device)

-knee-high compression stockings. The tightness these provide help calm my movements

-Jet spray massage. (I have a jet spray option on my shower head that I put right up to every inch of my legs)

-hot tub at local pool (the pounding water felt wonderful!). Unfortunately, I had a bad reaction to either the chlorine or the amount they used, so I had to stop this one.

-«Relaxing Leg Cream» by Magnilife. (If in the US, you can get this at Walgreens. If in UK, not sure. It is also available on Amazon)

-3 exercises in particular. (Found halfway down this website:

healthline.com/health/restl...)

-pineapple juice (pineapple acts as an anti-infammatory)

Take care,

Jessica

[lbrosa in reply to Hidden]

Thank YOU Jess...I shall try the ones that I can right away! I have Magnesium oil spray that I tried a year or so ago that did not help...but will get it out and try again! I have the use of a hot tub at our rec hall and I do use it and it is wonderful but the relief is very short lived! I love Pineapple and have some in natural juice but for some reason do not eat it often and will start that right away! Will let you know how I am making out! Thanks again for your support!

[Hidden in reply to lbrosa]

You’re welcome! I hope at least one of these makes a difference! It’s hell having the legs act up (and then having to spend all night getting them to be still).

[Joolsg]

Hi Ibrosa,

Welcome. We know what you’re going through. Augmentation is awful and withdrawal from Dopamine Agonists is hellish.

Maybe we should all consider a class action against the drug manufacturers for what we’re all having to go through.

Anyway, you’ve come to the right place as so many have had to get off these drugs.

You’ll need to reduce the pramipexole slowly and as the withdrawal starts you will need the help of a strong painkiller like tramadol or OxyContin. These can be reduced once through withdrawal.

You also need to consider which meds to take for your RLS once off Pramipexole. Pregabalin or Gabapentin are commonly used and take around 3 weeks to be fully effective.

Your nurse practioner should read the RLS UK info for professionals and the links on Augmentation.

With her onside, you will get the help you need to get off pramipexole.

Wishing you strength.

Take care

Jools

[lbrosa in reply to Joolsg]

Thank YOU SO MUCH Jools ... I started last night to cut my Pramipexole so only took 3/4 of the .25 tablet and it seemed to work OK during the night but still could not sleep more than a few minutes at a time. This morning my legs are raging! I have Tramadol on hand but it has never seemed to do much for me...I will discuss with Dr. at my next appointment as well as take her the links that have been provided here. I am dreading this experience but every day and night are nearly unbearable so the sooner I get rid of the Pramipexole, maybe I can find something more bearable...I prefer something natural versus prescriptions drugs but that may not be possible...time will tell! Thanks again for your words of encouragement and plan of action.

[Denisefs in reply to lbrosa]

I use an herbal cream which I rub on my knees while I wait for the pramapexerole to kick in. My daughter had it made for me. It's lavender and rosemary, I believe. If you are interested I can check the exact mix when I get back home.

[Denisefs in reply to Joolsg]

They've had very successful class action lawsuits against these two drug manufacturers in the past. Not for augmentation reasons but for side effects these drugs have caused. I'm hoping anyone that ever hears of a class action suit, please post it on our forum.

[Kaarina Administrator]

Here are some links that you/your nurse practitioner may find helpful:

rls-uk.org/

rls-uk.org/professional-res...

sleepreviewmag.com/2015/02/...

rls-uk.org/augmentation-reb...

[lbrosa in reply to Kaarina]

Thank YOU SO MUCH Kaarina...I will take these links to my next Dr. appt.

[Kaarina Administrator in reply to lbrosa]

You are very welcome, Ibrosa.

[SteveT]

Please may I ask what max dose you were taking Ibrosa. Steve T

[332linda in reply to SteveT]

.25 is the highest, I had already augmented on ropinerole and it only took a few weeks before pramipaxole made rls much worse

[332linda in reply to 332linda]

Sorry for confusion...i am lbrosa but using phone rather than laptop and it signed me in as 332linda

[SteveT]

I take 5 x 0.18 tablets and I thought I was augmenting but if I split them 3 at 4 ish and 2 at 7 pm I am managing. I also cut down alcohol, went to decaf coffee and take iron, magnesium and multi vitamins which all seem to help.

[lbrosa in reply to SteveT]

Hi SteveT...I take my (now 3/4 of a tablet) Pramipexole around 6 pm - it was prescribed as "before bed" but that did not work for me so I kept moving it back until it works fairly well for me around 6ish! I have to go to bed early ... around 8:30 because I can not stay in bed past 4 AM due to leg activity and all over uncomfortable restlessness. Did you cut alcohol out all together? I like to have a glass of wine in the afternoon with my husband occasionally but never thought that it affected the RLS.

[helpsie in reply to lbrosa]

Hi white wine seems to effect me . I am trying to come off Pramipexole with the help of co-codoamol. Its a slow job. But can anyone tell me what to do when I am free of it. Another drug ???

[Kayakcarole]

Hello all,

I am new here but have had RLS for 40 years; such a lovely gift from both my parents. I have been on Pramipexole for 10 years now beginning with 1/4 tablet but now need 1/2 that I take at 5 pm each day. My Functional Medicine physician suggested LDN ( low dose naltrexone) that I will begin soon after weaning off Pramipexole. I will keep you posted if it’s efficacy.

2 Things that I also use and could not live without:

1. Night Time Leg Calm essential oil from Nature’s Inventory. 3 squirts massaged onto low back area or even on legs and soles of feet.

2. Restful Legs homeopathic sublingual tablets. I Place 3 under my tongue and let them dissolve- very helpful when forced to sit in a movie theatre or car. There have been times I take these every 30 minutes. I buy in bulk on Amazon.

Good luck!

[ahome4u]

When I got off the dopamine drugs, I started by breaking the pill in half for a few weeks, and then quarters, and then down to just a kernel. Some nights I'd have to take a little more if I was having a real bad night. I still have some pretty bad nights but nothing like when I was on pramipexole. I just thought my RLS was getting worse, and here it was all along that the dopamine drugs were making it so bad.

[welschrispy]

Hello Ibrosa. You poor thing! Please see my recent post "So far so Good" There is hope. Best of luck