Restless Legs Syndrome
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RLS - pramipexole vs Wrap

I have been suffering with RLS for several years now. Tried pramepixol for the last two years only as needed. I never took it everyday. recently I tried a wrap from testifying, which is approved by FDA and available only with prescription. OMG, this is a great solution! Such a relief! I am bought one online and going to see my GP to get a prescription.

Con: too expensive :(. I don't know if it is covered by insuarance. You have to check.

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Auto correct made some spelling mistakes :(( .

*restiffic

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So pleased the restiffic foot wrap has worked for you Richvamidl

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What is this? I've not heard of it. Please explain. I'm happy for you.

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I swear by pramepexole as if I miss it's a nightmare I'm on 0.18mg 3x a night but never heard of wrap which I will look into although I'm happy with pramepexole at Mo

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Hi Tara, I know it's officious of me and not what you want to hear, but that's a very high dose of pramipexole for rls. You should be vigilant about side effects - particularly compulsive behaviour (shopping, internet addiction, gambling) which is difficult to recognize in yourself as it feels quite natural. I would urge you not to increase the dose any further even if the pramipexole stops covering all your symptoms. You could maybe bolster it with a different med. all best

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Speaking about med. Involuntarydancer, may be you can give me your opinion on this, you seem to know. I am taking Lyrica 100mg and Pramipexole ER 0.75mg every night for my RLS. I cannot see any longer the doctor who gave it to me but when I think of it, first I don't hear any one taking Lyrica and second don't you think it's way too much. I don't know how I accepted this med. from my doctor but at that time, I thought it was good medicine like she told me but now and then I have horrible nights where my body is so agitated, I don't know what to do with myself. Can you please help me and comment on this if you can. I am going to see this week another neurologist I saw once who does not seem to know much about RLS, so I want to be prepared. I know you are not a doctor but may be you know something I don't. Thanks a lot.

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Sadly your experience of a GP who is not very conversant with the treatment of RLS is very common. It is not a very well understood condition amongst the medical profession.

.75mg is rather high - I would be slow to go above .25 or so. You would need to be aware of the possibility of compulsive behaviour and also of augmentation - it does sound like you might be experiencing this. First you should definitely get your serum ferritin levels checked asap if you haven't already - low iron levels are linked to earlier augmentation so bringing up your iron levels might help.

I would be slow to condemn mirapex completely as it is very effective against RLS - but it needs to be managed very carefully and it is not a long term solution - eventually it seems almost inevitably to lead to augmentation. It is therefore very important to keep the dose as low as possible (the higher the dose the harder it is to come off it) and not to increase it as it ceases to become effective but rather to reduce it.

100mg Lyrica is conversely a low dose. You could possibly increase your Lyrica to try to counteract the breakthrough symptoms you are experiencing. On no account would I increase the pramipexole (mirapex) dose if I were in your shoes.

If you decide to come off pramipexole - which may be your best option. You need to be aware that you will likely be in for a hard time. Titrate down very slowly. It would be optimal if you could get a prescription for tramadol to help you through the worst time. Obviously tramadol can bring its own problems but in your shoes I would prefer to deal with those after I got off the pramipexole.

Be conscious of your diet - going to bed on an empty stomach is helpful for me - and also that you are not inadvertently exacerbating your condition with counter-indicated prescription and otc remedies. You will find them listed elsewhere.

Please be aware that I am not a medical doctor (not a doctor at all) just have so much unfortunate experience with RLS and the treatments available for it.

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Thanks a lot indeed. I really appreciate that you took the time to write all the info. I am going to check my ferritin this week and when I see my doctor on Tuesday, I will mention all you told me about without telling her of course that it comes from someone else, so may be she will address all these issues, but my feeling is she is not qualified to treat RLS. I am going anyway till I find a qualified doctor in my area. I used to be on Mirapex 0.25 mg long time ago and I don't know how I ended being with Lyrica and Pramipexole ER 0.75 mg. Information (I still don't have) is power as it is said and it's so true. I just, not long ago, became a member of this site and have never had enough time or strength to read what going on but now I see that one can learn a lot and then decide what to do. So thanks a lot again and I wish you to dance to better tunes than RLS. Alia 22

p.s. English is not my primary language in case you don't understand everything I wrote. French is.

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Your English is a lot better than my French! Btw Mirapex is Pramipexole - they are the same thing by different names - one is a brand name for the other.

I would say it is essential to educate yourself about this condition as widely as you can - GPs really do not know a lot about it and often with the best will in the world they prescribe things that can actually exacerbate it or cause additional problems.

It is telling that there are hardly any people on this website who are on the identical medication regime. RLS is a very personal condition and you need to know something of the meds to achieve the optimum regime for you.

Best of luck with your doctor.

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Hello again !!

How are u doing this week ?? I kept a copy of your last correspondence with me and went to see my RLS doctor who still does not know much about RLS according to me and to what you wrote me. I told her that the medicine is not working anymore and that I had 2 terrible nights where I did not know what to do with myself. I gave her a copy explaining augmentation (from the RLS Foundation). She did not even look at it and she told me that I have to increase pramipexole ER 0.75 mg. So I told her I don't want that at all, it's already high, I was on 0.25 mg and I don't know how I got to 0.75 mg. So she told me if you don't want to increase pramipexole I cannot help you. So I told her how much you want to increase it to, so she said to 1.5mg which is not much to start with , then she said otherwise you will keep suffering if you don't increase it and I cannot help you. So she sent to my pharmacy the prescription and I am still thinking about it. I am suffering so if I am going to suffer less by taking more, may be it's not so bad and I know that you told me the contrary of what she said, to tell you how much she knows, so I don't still trust what she said and will look for another doctor. Also, she said let's get rid of Lyrica when you said to increase Lyrica rather.

Anyway, I did also a blood work for my ferritin and tomorrow I will have the result.

I hope you don't mind me telling you all this but I think I trust what you said more than I trust what she said.

Hope you are having a restful night. Alia 22

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Your doctor is so wrong, please dont listen to her and please dont increase your dosage. It will only make things worse. She is right on one thing...she cant help you. So find a doctor who will listen and help you to withdraw from the pramipexole. Everything involuntarydancer told you is correct.

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Elisse, I appreciate so much that you took the time to write to me with a valuable information and I invite you to read my comments to involuntarydancer, comments I wanted to forward to you anyway. Thanks for sharing and caring. Let's stay in touch if possible. Best regards. Alia22

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Hi Alia, Ca va? I am sorry to take so long to respond. I was away in Brittany at a family funeral. I wish you had had better success with your doctor. I am afraid I agree with Elisse. That is VERY bad advice. 1.5 mg of pramipexole is a VERY high dose. When my sleep consultant heard I was on that dose, she made me stop it immediately.

Moreover, any relief you experience while on that dose will quickly be swamped by augmentation and you will have to increase again. Eventually you will have to come off the pramipexole due to augmentation and the higher the dose you are on the harder that will be.

I would second Elisse's advice to see another doctor. Or, if that is too difficult, perhaps you could ask for a referral to a sleep consultant.

I hope you manage to find a solution.

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Bonjour !! I am glad to hear from you again. Like I said before, you can be a neurologist educated in famous school like the doctor I want to see and still don't know about the sides effect of RLS. They know the basic thing about RLS (the urge to move your legs and the fact that you cannot sleep) and when you ask them before you go to see them if they treat RLS, they tell you yes to bill a huge amount to the insurance for the visit and you realize they know zilch about RLS. I was not planning to go back and because I was suffering a lot, I wanted to ask her what to do when I have these terrible nights and she told me if you don't increase pramipexole, you will suffer even more and it was confirmed to me at that moment, that she is really ignorant about augmentation and the rest after the correspondence I had with you and what I read from other members. I still did not find a qualified doctor to see but I keep looking and I don't really see any solution to this problem that is not going away for all of us and sometimes I suffer so much and my body is so exhausted that I am tempted to take a higher dose then I stop myself. Did u hear about Pregabalin plus Pramipexole for RLS. Will be in touch again but you can keep sharing what you want to say with me. I hope to hear only good news from you and thanks again, Alia22

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The good news is that there are treatments other than dopamine agonists (pramipexole). You do need to find a good doctor who is knowledgeable and prepared to prescribe a range of medicines.

You could also consider trying kratom which is quite effective against RLS. It is illegal as a drug in the UK but according to Raffs it is not illegal as a clothes dye(!). I import it from a website based in Amsterdam.

It is very important to get your serum ferritin levels checked and to ensure that they are high.

It seems to be helpful to keep yourself very well hydrated.

Finally there are many who highly recommend lifestyle choices such as diet - the low sulfur diet and the fodmap diet to name but two which have strong adherents.

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Hi Alia, terrible situation with your doctor actively opposing you.

I was thinking.... do you have a RLS foundation in France? We have in the Netherlands and they have an advisory board of doctors/ neurologists. Through that way you may find a more knowledgeable doctor. Otherwise, could you take the route through the EARLS, the European RLS Alliance (www.earls.eu).

.....

Yes, there is one in France: asfjr.fr

Check out their website and ask them for help. You shouldn't have to fight yor doctor the way you described. And we can offer support and knowledge, but you need a doctor to examine your situation and help you find and prescribe the best treatment.

Bonne chance!

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Merci LotteM, I am in the US but believe it or not, not easy to find a neurologist who knows about RLS beside the basic knowledge we all know better than they do. I am still looking here and hope to find one who can really help me. Take care now!!

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Makes me think... why can't we get the various rls-foundations to collect and publish a list of doctors/ neurologists in their country that are more-than-average knowledgeable about rls?

Here (NL) the website is going to get an update and it is one of the things I will suggest. Making this list maybe harder than it seems, though. And will not help you right now, unfortunately.

Don't give up Alia!

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Hello again, hope you are already having a good night sleep. It is said "surround yourself with thinkers" and you are one of them. It's a very good idea and I will take it one step further. I am going to write to the Restless Legs Foundation here in New York City, asking them what you just wrote, to publish like you said a list of doctors with a specialty in RLS, doctors knowledgeable enough to guide us in our struggle with RLS, and as a member paying every year, it's their job to do such research and publish such list that will help every member and will even attract more members and I will add that a neurologist who hardly knows about RLS should not be included in that list and we all can ask the same thing according to where we reside. What do you say about taking your idea one step further, let me know when you have a chance. Merci bien. Alia22

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Thank you 😊. And for seeing what I think is my best quality. 🙏

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You could have a look at rls.org which is the US RLS foundation. I think they have a list of approved doctors. I hope you find someone knowledgeable.

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Hi,

I tried to test myself not to take pramipexole some nights but I couldn't get sleep without it.. well done you. I am off to doctors today, will check what they know about it :)

Thanks and hope it is covered by insurance. :)

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I was away from home 1 night and forgot my pramipexole my God did i suffer no sleep that night and just about climbing the walls by the time i got home.I was taking 6 tonight i know this is a high dose i have cut it to 5 still to high but i would be very interested in this wrap but i have never heard of it

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That's a lot of dose! Hope you find an alternative medicine.

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Be cautious about the dose of pramipexple and be aware of possible side effects (see my post to Tara above). If you have augmented on pramipexole it is unlikely that the foot wraps (or anything less than opiates) will be particularly effective. You may need to undergo the difficult process of withdrawing from the pramipexole if the wraps are to stand a reasonable chance of working for you. You could also look at the Relaxis pad which I find affords relief for my rls when it is not too severe.

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I never knew about them side affects which thankfully I don't do but I can't not have them I've a 9 yr old daughter and no sleep and climbing Walla isn't ideal esp when your on a school run and driving ,I'm also on gabapentin 1800mg and several other meds as I have FM it's like no win situation you have you get side effects you don't then your lifes a living hell with pain and no sleep x

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I am 79 years old and have had RLS for almost 40 years. I have severe RLS where it affects by arms and chest at times. I used to spend days without sleep and have been on many different medications. I finally found a combination of medications where I can get some sleep. I know it is a lot but when you can't get sleep you do what you have to do. I take 2 mg of Pramipexole, 300 mg of Neurontin and 1/2 of a Vicodin about 2 to 3 hours before bedtime. It is the only way I can get some sleep. I have put on weight from the Pramipexole because I am almost obsessed with eating at night.

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