Pramipexole augmentation

Use this forum to discuss any issues associated with Augmentation
Pianomom3355
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Joined: Fri Nov 15, 2019 11:07 pm

Pramipexole augmentation

Postby Pianomom3355 » Mon Feb 10, 2020 1:13 am

Hello,

I am having some major issues with augmentation and am looking for advice on how to transition off of Pramipexole. I think I would
like to try Lyrica.....how have people dealt with that change? I'm having RLS in the mornings now, which I really don't like! Afternoon
and evening was enough, thank you. I am also interested in IV iron infusions.....how does one go about getting those? I do not live
near a RLS Quality Care Center, so I'm not sure where to go for treatment. Thanks for any input!

Rustsmith
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Re: Pramipexole augmentation

Postby Rustsmith » Mon Feb 10, 2020 2:36 am

There are basically two ways to get off of pramipexole and the choice depends upon your current dose as well as how supportive you think that your current physician will be.

The first, which is difficult, is to taper down to a dose of around 0.25mg and then simply quit cold turkey. During the taper, your sleep will suffer and your RLS will get worse. When you quit, you will not sleep at all for 5 to 7 days, your RLS will be severe and then your sleep will slowly come back and the RLS symptoms will subside back to whatever your baseline is like. You should be at your current baseline after about a month. Lyrica is not strong enough to provide cover for your RLS symptoms during the withdrawal, but should help once you are off and would probably speed the recovery time to something less than a month.

The second approach is to get your doctor to provide you with about a week's worth of a low dose of an opioid. The opioid covers the pramipexole withdrawal and then you taper the opioid to minimize the opioid withdrawal, which is much less traumatic than withdrawal from a high dose of pramipexole. You can take the Lyrica at the same time as the opioid so that it will help to minimize the problems during the transition. Of course, the problem is convincing a doctor who does not understand augmentation that you need 5 to 7 days of an opioid in the current anti-opioid climate.

You also need to think a bit about your current pramipexole dose. If you are taking something like 1mg/day, then the taper will take a while and your sleep issues will probably detract from your life for more than a week or two. To me, that would favor the opioid approach. And if you are currently only taking 0.25mg, then the "cold turkey", bite the bullet for a week approach would seem to make some sense and it avoids the complexity of convincing a doctor to write an opioid script.

Finally, you should give some thought to the severity of your RLS and whether you believe that Lyrica will actually work. If you tried gabapentin and/or Horizant and they came up seriously short of controlling your symptoms, then the chances that Lyrica will be significantly better are not really great. In that case, you may be facing having to use an opioid for your RLS after you get off of pramipexole, which makes suffering through a cold turkey withdrawal rather pointless.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: Pramipexole augmentation

Postby stjohnh » Mon Feb 10, 2020 2:59 am

Pianomom3355 wrote:Hello,

I am having some major issues with augmentation ... I am also interested in IV iron infusions.....how does one go about getting those? I do not live
near a RLS Quality Care Center, so I'm not sure where to go for treatment. Thanks for any input!


Hi Pianomom, Steve is very knowledgeable and I would pay close attention to his comments.

Mostly people get IV Iron by educating their GP or Neurologist (usually by you informing the doc that IV Iron is now considered a first priority treatment for RLS and giving the doc a copy of the guidelines). Once the GP/Neuro is considering IV Iron reasonable, you will get the needed blood tests to check if you fit the guidelines (you will need a ferritin, iron panel, and transferrin test). Then he or she refers you to a hematologist, who then must be persuaded that IV Iron is indicated. The hematologist orders the IV Iron to be given, most commonly at an IV Infusion center (where IV antibiotics and cancer drugs are the most commonly administered IV medications). Unfortunately this complex routine can be stopped by the docs at multiple stages. This is the way it is usually given in USA. If a GP was willing, any GP in USA can give it in the regular office exam room. Most won't. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

There are two ways to make it simpler. 1) Get treated at an RLS Quality Care Center. 2) Find another patient who has had IV Iron for RLS and go to that doc. If you have difficulty finding cooperative docs it may be worth while to bite the bullet and travel, even if a long distance, to an RLS Quality care center.
Blessings,
Holland

Pianomom3355
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Joined: Fri Nov 15, 2019 11:07 pm

Re: Pramipexole augmentation

Postby Pianomom3355 » Wed Feb 12, 2020 12:19 pm

Thanks for the input, stjohn........I may have a maverick GP who would administer the IV iron. I will ask him if it is possible.
Thank you!

badnights
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Re: Pramipexole augmentation

Postby badnights » Thu Feb 13, 2020 9:04 am

.I may have a maverick GP who would administer the IV iron. I will ask him if it is possible.
It will help if you can take him a printout of the paper that Holland linked to . And if you have time, give it a read yourself, whatever you can get out of it will be helpful.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Pianomom3355
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Joined: Fri Nov 15, 2019 11:07 pm

Re: Pramipexole augmentation

Postby Pianomom3355 » Sat Feb 15, 2020 1:59 pm

I have been taking 1.5 mg. of pramipexole for years......I am sort of afraid to get off of it or even lessen my dose. But I do feel I am
having augmentation issues, so something has to change. I spoke with my regular GP yesterday about iron and she was clueless.
Said I was not anemic, I don't need more iron. So I need to see the maverick GP, which is about a two hour journey from here.
I think he would be game to have me try the iron IV and I would have to pay out of pocket.....I'm sure it is expensive.

Polar Bear
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Re: Pramipexole augmentation

Postby Polar Bear » Sat Feb 15, 2020 2:57 pm

Pianomom.... I very much understand your fear about reducing your pramipexole.
Last year I weaned myself very slowly off my much too high dose of ropinerole which I'd been taking for about 15 years.
My symptoms were covered with codeine and pregabalin which I still take. I also occasionally used Kratom while weaning off.

The support and encouragement from the wonderful members here kept me going and it was the best thing I could have done. My 24/7 symptoms are now much less and under good control.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: Pramipexole augmentation

Postby Rustsmith » Sat Feb 15, 2020 4:22 pm

If you are currently taking 1.5 mg of pramipexole, then there is a very high probability that you have augmented. The FDA approved max for pramipexole for RLS is 0.5mg and most of the experts limit it to 0.25mg.

Getting off of pramipexole is going to be difficult. To quit from a dose of 1.5 mg, you will need to taper your dose down to at least 0.5mg before your stop. During the taper, your sleep will suffer and your legs will go crazy. Taking an alpha-2-delta med like gabapentin will not cover these symptoms, only an opioid will help and since your doctor appears to be clueless about RLS, then it will be difficult.

Then when it comes time to stop, you will go for 4 or 5 days with zero sleep and you will be very tempted to restart the pramipexole toward the end. After that period of no sleep, your will start to be able to sleep a little bit each night and the amount will slowly increase until your return to whatever your untreated RLS state is after about a month. During this time, another med such as gabapentin may help.

As for the iron infusion, if the maverick doctor will do it, then it will take around two weeks before you see any results. Infusions do not help everyone, but hopefully will be enough for you to be able to go without meds until it comes time for the next infusion.

I am sorry that all this cannot be more positive, but you need to have an idea of how difficult it will be to get off of pramipexole now that you are likely augmented. The only thing that I can suggest that might make all of this easier is to possibly educate your GP. There is a book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening that you can get from Amazon for about $35. The book was written for doctors but is also understandable by patients. You could get a copy and then mark relevant passages to share with your doctor. The other document that might be even more valuable is a paper published by the Mayo Clinic titled "The Appropriate use of Opioids in the Treatment of Refractory Restless Legs Syndrome". This paper describes your situation and justifies the use of opioids. Here is a link to that paper: https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Pianomom3355
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Joined: Fri Nov 15, 2019 11:07 pm

Re: Pramipexole augmentation

Postby Pianomom3355 » Mon Feb 17, 2020 2:50 pm

Wow, thank you for all of the input......it will be a tough road to go down (weaning off of Pramipexole) as I have been on it for 20 years.
I can't even think of weaning until probably summertime, when I am not so busy with work. I am a pianist and accompanist, and an
interesting thing about RLS.....I don't get it as much when I am at the piano. It must be something with how the brain is wired.

QyX
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Re: Pramipexole augmentation

Postby QyX » Mon Feb 17, 2020 3:59 pm

Pianomom3355 wrote:Wow, thank you for all of the input......it will be a tough road to go down (weaning off of Pramipexole) as I have been on it for 20 years.
I can't even think of weaning until probably summertime, when I am not so busy with work. I am a pianist and accompanist, and an
interesting thing about RLS.....I don't get it as much when I am at the piano. It must be something with how the brain is wired.


I am pretty sure that playing the piano will stimulate a dopaminergic response, elevating your dopamine levels and therefore works as a kind of natural medication.

When you are on Pramipexole for such a long time, maybe you want to take a look at Kratom. Kratom is as potent as a mild opioid like Tramadol or Codeine and can achieve even stronger effects when you take higher doses.

If I don't have access to regular opioids, Kratom is what I would use to stop Dopamine-Agonists, together with medical Marijuana, in case it is available.

However it also can be done without such helpers. It is just way more annoying.

Rustsmith
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Re: Pramipexole augmentation

Postby Rustsmith » Mon Feb 17, 2020 5:58 pm

I don't get it as much when I am at the piano. It must be something with how the brain is wired.


There are a couple of possibilities as to why you don't have as many problems while playing. The first is that many of us find that anything that requires close concentration provides a distraction that avoids problems. Working on crosswords (for those who do that), sudoku, a very good book or a movie that really holds your attention are all distractions that can help. So, concentrating on reading music while you play could be responsible.

I can also relate to the music side because I play a variety of different clarinets (3 different sizes) in a couple of different groups. Rehearsals and concerts are almost always in the evenings and I have never had problems with RLS while playing. So, maybe the music helps.

Finally, for those of us who are involved with music, you are probably correct that there is something about the way that our brains are wired. I find that just listening to music helps to calm me and to reduce my anxiety levels. Before I was diagnosed with RLS, I used to listen to quiet classical music with my Ipod when I was going to sleep. But, for anxiety and calming, it doesn't need to be something soothing, just a form of music that I enjoy listening to.

PS, my mother was a piano teacher as well as a church organist. She tried to teach my three sisters and me to play piano, but it never took. However, all four of us ended up playing various wind instruments all the way through high school, so she got involved as our accompanist at all of our competitions.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Pramipexole augmentation

Postby badnights » Wed Feb 19, 2020 8:51 am

Hmmm I started a reply to you on another Topic, I was writing it in my text editor program , but I left it because I was falling asleep at the computer . I just opened the editor to reply to this Topic, and there was my unfinished reply that I had completely forgotten about.

Playing the piano engages your brain. It's not just physical quiescence but also mental stillness that triggers the symptoms. When your mind is engaged, you're less likely to have symptoms.

As for coming off the pramipexole, don't be afraid. It's good to know how hard it can be, only because if you expect it to be easy you're more likely to give up on day 2 or 3 and start the pramipexole again. It's very ittimportant that you realize - the torture ends, and then your symptoms are way better than before you stopped. It gets worse when you stop, but only for a little while, then it's better and it;s totally worth it.

You should not expect anything of yourself for at least 5 days - nothing but getting through. If you have no other obligations, it's much easier to bear.

This is what I had unfinished (slightly edited):
Hi pianomom. As Holland said, people here have tried lots of things. Various people have found their symptoms to improve after stopping aspartame, ice cream, gluten, oxalates, sugar and processed foods, and on. The keto diet is supposed to be good for weight loss, but what I have found works best for weight loss is daily 12-15hr fasts (And a semi-keto diet. Paleo, anyway). I don't ever need to lose a lot of weight, though, just a few pounds now and then, so the fasting might not work as well if you need to lose a lot.
I also find the fasting good for eliminating bloat.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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