Restless Legs Syndrome
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Newbie. Am I taking too much Pramipexole?

Hello! I am 74. I experienced some RLS during my pregnancies and then it started again in 1997 and has been a full time companion ever since. I was prescribed a low dose of Mirapex around 2001 and the doctor promised no side effects. Since thenl, I have moved and have a new doctor. My prescription now reads 3 X 0.5mg/day. I chew the first one around 5pm and the other two (one broken up and one whole) before I go to bed around 10. I have been on this dosage for at least 4 years. If I follow this regimen everything is fine. If I forget to take the pills on time, I not only have unbearable restless legs, but often experience the same symptoms in my arms.

I wish I wasn't dependent on this medicine. I tried magnesium spray as a substitute, but it had absolutely no effect. When I asked my doctor if I should follow any kind of protocol to stop Pramipexole I understood her to say I should be able to stop it any time I want cold turkey.

I have just discovered this community and read the sugested minimum/maximum dosage of Pramipexole. I am a little freaked out to be taking three times the maximum! I would stop it if there was anything else that worked as well and am interested in the promise of Low Dose Naltrexone but have no idea how to effectively change from one to another.

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Hi libraryannie and welcome on here.

I was on a similar dose of pramipexole to yours when I was finally ordered to come off it (My dose increased gradually over 10 years or so). At that dose my symptoms were under control but like you they were dreadful if I forgot to take a pill.

Sadly, it is a WAY too high dose for Rls - I forget the highest recommended by RLS experts now but i think it is about 0.25mg - it may be even lower - they lowered it recently. Do you have any impulse control issues? I had no idea about this side effect and only realized after I came off it that I had - most uncharacteristically - become addicted to internet shopping. This ceased as soon as I came off the drug.

There is no easy way to get off pramipexole. Your doctor is completely wrong. It is very difficult to get off. You should not discontinue cold turkey but reduce gradually. Symptoms get a lot worse - a lot worse - and typically there is a period of a week to 10 days when it is not possible to sleep at all. The only thing that helps in this acute phase is an opioid such as tramadol or OxyContin. Rls responds really well to these drugs even when very augmented.

Once the drug is completely eliminated from your system, the rls symptoms should settle down to around the level they were at before you started taking pramipexole. They should then respond to a different form of treatment such as gabapentin/pregabalin or an opioid which many people tolerate very well as a treatment for their RLS.

For the majority of RLS sufferers it is important to get serum ferritin levels high (over 100 is recommended by US experts) so it is important to get your levels tested and get the actual figure (not just that you are ‘normal’). Normal for rls is different from normal for the general public. There is a theory that having levels high can help during the withdrawal from pramipexole.

I know this is the last thing you want to hear. There are numerous people on here who have or have had the same problem (though not many on such a high dose). I don’t think there is anyone who regrets discontinuing pramipexole once they finally get off it.

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I should have said, I’m not sure how effective low dose naltrexone will be against Rls. I think it is very individual. I think it is unlikely to work while withdrawing from pramipexole.

However, I did read of one person who was prescribed naltrexone (not in a low dose - he was taking at least 12mg) for a separate condition when he was very augmented on pramipexole. He found that the naltrexone reversed the augmentation so that he was able to lower his dose of pramipexole considerably and it also reversed impulse control problems he was having.

I don’t know what side effects naltrexone has at that dose - I think I read it can cause nausea - but subject to side effects and any other counter-indications, I think I would try the naltrexone if I had to come off such a high dose of pramipexole again on the basis that if it didn’t work it would be nothing lost.

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I can't find the thank you note I thought I sent you...About being able to build a house out of the amazon boxes I have received over the years!! Yes!!! I definately have an impulse control issue! I also wanted you to know how much I appreciate you taking the time to write 2 detailed and very helpful letters.

OK. I just got the bloodwork results back. I don't see "Ferritin". There are three tests.

Iron 42 reference range 50-170 mcg/dL

Total Iron Binding Capacity 255 range: 250-450 mcg/dL

Iron Saturation 16 range: 15-50%

Are those the tests I need?

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Hi Libraryannie,

I don't have the qualification to determine if those are the right results. I usually get my result over the phone from my gp and it is simoly a number. It could be the first one in which case you have a serum ferritin of 42 which is not bad but should be much higher for rls. Maybe you should re-confirm with your health care provider.

I love your quip about the amazon box house. I amassed an enormous collection of shoes and handbags during my primapexole days. I don't even have much of an interest in them usually and it ceased immediately when I eliminated primapexole. I found I had more time also as I didn't 'have' to spend my evenings browsing the web for non-essential stuff. Am just grateful it didn't take the form of gambling. There are horrendous stories out there of people losing everything through this dopamine agonist induced compulsion.

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Sorry for the long posts.

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Keep talkin Lady! Keep talkin!

One whole lot of sense and wisdom there!

😎

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Perfect response ID. You’ve said everything!

Good luck reducing the Pramipexole. We’ll all be with you to help get through withdrawal.

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Don't listen to your doctor they haven't got a clue, before I started coming on here, when I was on the pramipexole, when I told my GP I wanted to stop taking it as it was giving me compulsive tendancies I was buying all the internet even though I did not want anything,

My gp told me to stop one a day until I was on nothing I was on 6 tablets a day so within a week I was on nothing, it was a nightmare, basically i went for Turkey not recommended, it's been 18 months since I came off it, I'm still finding difficult not to press the order button when I go on line when these adverts come up.

As for the. LDN I've been on it since 2010 I use it as I've got MS I'm on the highest dose for my condition 4.5ml at night I've still got the Rls but everyone is different, I take iron tablet and magnesium citrate everyday, if I still get the uncomfortable feeling I have a vibrio plate and that stops it immediately, but only for a few hours, sometimes I have to get out of bed to go on my plate just so I can get to sleep with my legs kicking out

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Thank you for your response Welshone. Hmmmm. I have never heard of a vibrio plate or that kind of technology!! Of course, I immediately consulted Amazon!! What brand do you use and do you like it? How long do you have to be on it to get relief?

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I originally bought my vibrio plate when I was diagnosed with MS just lucky for me it works for my restless legs as well, I've got one you can stand on it it has a bar all the way around so you've got something to hold onto, I only go onto it for about 1 minute, it has the settings on it I find the higher setting is best for me, I'm used to it now I've had the page for over 10 years, when others come here and ask what's that? pointing to the vidro plate they ask can they have a go, the soon jump off as it's a very wierd feeling. I started on the low setting and built it up. Looks a bit like this one

argos.co.uk/product/1073483

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The fact that you had RLS during earlier pregnancies would put low iron levels as suspect. Get iron levels (Ferritin and % saturation) done - Ferritin should be 100 or more, and % saturation should be over 20%. Pretty good (but lengthy write-up)...

movementdisorders.org/MDS/J...

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Thank you DicCarlson. I just had annual bloodwork done. Would the ferritin numbers be included? I haven't gotten the results back yet.

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OK. I just got the bloodwork results back. I don't see "Ferritin". There are three tests.

Iron 42 range: 50-170 mcg/dL

Total Iron Binding Capacity 255 range: 250-450 mcg/dL

Iron Saturation 16 range: 15-50%

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It looks like low Iron to me. Ferrous bis glycinate chelate is the supplement you want. This form is available is 18mg or 25mg. Just do a search on Amazon. You can also get a patch from PatchMD which eliminates the digestive tract entirely. The chief concern with Iron supplements is constipation - The Ferrous bis glycinate does not have that effect and supposedly it passes the blood/brain barrier more readily. My symptoms subsided in a week with daily supplementation (empty stomach). I then went to every other day, then 3x week, then just once a week then eliminated it. You can put Ferrous bis glycinate in the search box here for additional information. The question I have always had is why? Why was I deficient in Iron? What caused that? Good luck.

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you can't just stop these drugs you have to reduce them, at the same time perhaps introducing something else. I am lucky I have an amazing consultant neorologist who has a special interest in RLS. I hope this information helps you cheers shakey

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Thank you Shaft1952! I will try to find a specialist.

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The FDA has approved the dosage of Pramipexole (generic name- Mirapex ) up to 1.5mg/day. That is what I take. I am also 74 and have had RLS since 2000. Mirapex , to be effective should be taken 2-3 hours before bedtime per BI,one of the manufacturers of this drug. Also it should be taken all at once not spread out. Additionally, since I have reduced my intake of sugar (I love sweets) and more recently eliminated artificial sweeteners, I have noticed a significant impact on the effectiveness of Mirapex.

I am new to this site and will shortly be posting my experiences with RLS and Mirapex.

Hope this is helpful.

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That dose is the old approved dosage for Mirapex (pramipexole) Now the RLS experts are recommending to take no higher than 0.25mgs because of augmentation being a BIG problem. If you are not experiencing yet then you could at some time.

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Hello xjohnnym, If I am doing my math right, we are taking the same dosage of Pramipexole. I think I came up with the idea to take one at a time to spread out the length of sleep time they would be effective! I will try taking them all at once but I am trying to cut back at the same time. For the next two weeks, I will be taking 2 3/4 of the .5 pills. I look forward to reading about your experiences with Mirapex.

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Hi libraryannie, glad to have you on here. Hope you gain some helpful information, as I did. Invoularantarydancer's reply about sums it up. I don't know where you live, but hopefully it is is somewhere that you can get access to a RLS clinic. Check on RLS.org. They provide the location of RLS Clinics and Dr.'s who treat RLS around the US. Not sure, about outside the US. Think of you history, with Primary Care, Neurologists, and other doctors who are really not knowledgeable about RLS, as a bad nightmare! Find a Clinic if possible. Consistent with ID's description, I was taking 1 mg pramipexole 3 to 4 times a day and decided I had to stop. I went "cold-turkey" because I didn't know any better and had no one to consult. I got about 8 hours sleep in the first 8 days. Had I known better, I would have phased down on the pramipexole and used low dose, oxycodon to get thru the miserable nights. I have, since withdrawal, used Horizant to control, pretty well, my symptoms at night. Unfortunately, I understand it is not available outside the US at this time.

I hope you find a Clinic and have access to it.

Best of luck and keep us informed on how you are doing.

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Dear Billdel, Thank you for the link to how to find a RLS clinic. I do live in the US and will check into Horizant.

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be careful with the mirapex the side effects can be shocking. while I have managed to get on to post has anyone tried the pain pen plus? I have one and when the legs are particularly bad and not responding to medication I have used it with some success. Have not had any result with it on its own.

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