I am currently completely off Pramipexole for 7 months, after being on it for 6 years. It was the only medication that gave me excellent relief and no side effects, except one sudden episode of augmentation . All the augmentation symptoms have resolved, but the symptoms of course are daily and last for hours every night.
I have tried pregabalin and Gabapentin, which helped, but not as much as Pramipexole and I never accommodated to the side effects. It was stop them or stop working. CBD with 5 mg of THC works great, but I can’t do that and continue in my line of work. That is my go to once I retire. In the meantime I use TNS, hot baths, supplements, iron all the usual tricks that only give me temporary relief.
My question is cam one manage augmentation with occasional “vacations” from the Prami?
Has anyone out there gone back on a dopamine agonist after resolution of augmentation with intermittent drug” vacations?
Have you tried opioids? Kratom? or another one to try is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...movementdisorders.onlinelib...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
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.
know my triggers pretty well after 50 years. I never add anything new without isolated it for several days first to see the response. Learned that lesson the hard way!
Unfortunately, I don’t tolerate opioids as I have a paradoxical reaction to them- I get hype up and then the RLS kicks in, plus the nausea and itching. I have tried gaba pentimento and Pregabalin for three months each and the side effects never decreased, and the relief was obly partial. It was either stop them or stop working since I couldn’t think straight, was dizzy and nauseous most of the time. I fon’t think a playlet inhibitor like dipyridamole is worth the risk to me. U fortunately, Pramipexole was the only drug that gave me excellent relief eithout discernible side effects. No problems for 6 years, then rapid increase in symptoms that resolved within a few days of cold turkey discontinuation. My neurologist isn’t sure it was augmentation or a reaction to something else( I did have pyelonephritis during the time of increased symptoms) He thinks I should try Prami again as I don’t have a terribly rough time with cold turkey withdrawal. I’m holding off on that and trying non medicine approaches like TENS and biofeedback. I do however, take .125 mg of Prami if I have to travel by air( once in a blue moon) and haven’t had any issues with that. Air travel is a major trigger for me, as is any car trip greater than 3 hours.
I will be starting phase 2 of the RLS study after Christmas, which will e tail 3 sleep studies with and without the e-stim device. It will be interesting to see how these studies compare to the ones I had done 10 years ago before I was on the Pramipexole.
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Hi Jen, it sounds like you have the ok to take iron. I recommend using ferrous bisglycinate (on Amazon called Gentle Iron). Take it about an hour before bed on an empty stomach. Several people on here get immediate relief by doing this.
Most of the people who get immediate relief have never been on a DA. However if you look up RKM 7 you will see that between iron and Gabapentin she has relief from post DA RLS.
That's a real shame that nothing except pramipexole has worked for you. Hopefully it was the pyelonephritis that was the problem if you end up starting them again.
I would never consider going back on a DA as once you've experienced augmentation, it tends to happen again very quickly.I think drug holidays from opioids work well as the opioid receptors reset. However, there are some experts in the USA who believe DAs cause permanent damage to the dopamine receptors so a 'reset' isn't possible.
You don't mention opioids. Have you tried any? They're very effective for RLS, particularly when gabapentin and pregabalin haven't worked.
Hi Joolsg. That was really interesting. I had augmentation on Pramipexole for years and had to keep switching to Codeine for a week then back to Pramipexole for 2 months. Then switch again. Finally I ditched it - and suffered horrendous DAWS - and now I'm on Tramadol - have been on it for 6 months. But it now looks like I am developing tolerance to it and needing more to be effective. I'm curious to learn that Prami may permanently damage dopamine receptors. Could that be why I am unable to find any drug able to work long term without augmentation or tolerance occurring? I have just received the Kratom and Im going to try that. All the best.
Tramadol is the worst opioid to switch to after augmentation on dopaminergic drugs because it's the ONLY opioid that also 'feeds' the disease and makes the symptoms worse ( augmentation). Again, Dr. Buchfuhrer think it's because the D1 dopamine receptors are permanently damaged for some of us. Tramadol also over stimulates the D1 receptors, so what you are experiencing is probably augmentation rather than tolerance.You say you can't find any other drug to help. Have you tried pregabalin or gabapentin? They take 3 to 4 weeks to become fully effective and do work for many.
If you have severe, refractory RLS ( it sounds like you do) the best options are Oxycodone, methadone or Buprenorphine.
Also ensure your serum ferritin is above 100, preferably 200 as keeping levels up helps.
Kratom definitely helps many but it's illegal here in the UK so I switched to Buprenorphine and it has been brilliant for me.
Have a look at the Massachussetts RLS Opioid study by Dr. Winkelman. Most people stay on the same low dose for many years without developing tolerance and increasing the dose.
Thank you - I really am grateful. Having struggled for decades and only just joined this group, the help has been immense. I will get on to my Doc and have my ferritin levels checked. Also speak to him about Buprenorphine. If my ferritin levels are low, how do you get them up? I'm also in the UK - but got some Kratom in OK. I'm desperate for an alternative if I need to come off Tramadol. Yes I tried Gabapentin and Pregabalin. I was on Gabapentin for 6 months and kept increasing the dose but it just never worked. I was constantly supplementing with Codeine. Tried a bunch of anti-anxiety meds too as my rls seems to have been triggered by trauma, but none worked. Opiates definitely are the most effective. Even when rls kicks off on Tramadol, it is minor compared to being on Pramipexole. When it kicked off on Pramipexole it was horrendous.
Get a full panel fasting blood test and stop supplements 48 hours before morning test.Print off the Mayo algorithm and ask your GP to read through it and explain that the NHS and NICE CKS guidance are both outdated. RLS isn't taught in the UK at medical school or during GP or neurological training, which is why treatment is so poor. GPs have 10 minutes to discuss, research and prescribe so are totally unaware of the common complication of augmentation or that pregabalin& gabapentin often don't work when the patient has been on dopaminergic drugs for years.
Hopefully your GP will be willing to learn about this common disease.
The Mayo algorithm now puts raising iron as the first step in treatment.
Most experts prescribe iv iron infusions of Injectafer as it raises levels more quickly and is less cruel than waiting months/years for serum ferritin levels to rise by oral pills.
The majority of RLS patients show improvement by raising ferritin levels.
Some UK hospitals will give infusions but it's best to write direct to local haematology department with evidence. I had an infusion but am in the 20% who don't show improvement.
You can raise levels by taking ferrous bisglycinate every other night before bed.
You mention anxiety meds. Most SSRI and SNRI and tricyclical anti depressants trigger or worsen RLS and the safe options are trazodone and Bupropion.
So if you're on any exacerbating meds, replace with benzodiazepenes or trazodone/Bupropion.
If raising ferritin and stopping anti depressants doesn't help, discuss fully with GP and ask for a different opioid.
Your GP will tell you opioids cause addiction and tolerance but that is rare for RLS and you can show the Massachussetts Opioid Study. It proves low dose opioids are safe, effective and do not cause addiction unless there's a history of abuse. Tolerance is also unusual and most people stay on the same low dose for decades.
Thank you so much. I really appreciate your advice and will make a not of all this. Would you mind giving me your opinion on Tramadol? I have been on 3 x 50mg tablets a day. Morning, lunch and night. Recently 1 tablet at night wasnt enough so I've had to take 2. This makes it 4 tablets per day. Is this a low or hight dose? You mentioned many people take a low dose of tramadol for years. I'm not sure what low dose is?
The Mayo algorithm states that 50mg is the starting dose and 150 -200mg is the effective dose.When do you get breakthrough RLS?It may be worth changing the timing of the meds so you take late afternoon, early evening and before bed.
Once you're through augmentation and off dopamine agonists, the RLS reverts to what it was before any meds and follows the dopamine cycle which is lowest between 4pm and 6am and that's when RLS is at its worst.
Hi Sue. I tried up to 900mg - the 900mg made me really ill. I tried several times but each time the same result. And yes I did read about splitting doses which I did.
To add to what Joolsg said Increasing your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Fast after midnight before the test. You also want your transferrin saturation (TSAT) to be between 20 and 45. As far as how to increase it, there is more to add to what Joolsg said, so once you know your results, post them here.
I know many in the USA on opioids for RLS. Join rls.org and they have a list of Centres of Excellence where opioids are prescribed where required. All the top RLS experts are in the USA.(Drs. Buchfuhrer, Ondo, Winkelman, Earley, Clemens. )
Most sleep Centres also follow the Mayo Algorithm and will prescribe opioids for refractory RLS.The CDC has just issued new guidance on opioids.
You may have more difficulty in the mid West but otherwise the RLS foundation has lists of physicians who are knowledgeable about RLS.
Dr Winkelman's opioid registry at Massachussetts General hospital is very useful to show that opioids do not lead to addiction or tolerance.
I get panic attacks / anxiety on any opioids but Buprenorphine was my 'last chance saloon.'It stopped all RLS but the panic was unbearable. Luckily, adding a small dose of pregabalin, on the advice of Dr. Buchfuhrer, completely settled all anxiety & panic attacks.
there will always be issues with tolerance with opioids, which is another reason I won’t take them. Ididn’t experience DAWS, but did have some rebound symptoms for a few weeks., which is why my neurologist feels something else may have been in play when I had augmentation that quickly resolved. With TLS who knows?
Good day haandyjen. Having earlier this year discontinued pramipexole after over 20 years of daily use, I never ever would consider going back to pramipexole or any other dopamine agonist or dopamine type (e.g., Sinemet) RLS medication.
Separate from augmentation, following my discontinuance of pramipexole, I experienced months of torment in what I believe to have been "Dopamine Agonist Withdrawal Syndrome" (DAWS). When I brought with me to my last doctor's appointment a week ago a list of RLS medications that I have tried over the last several decades, the list was annotated in boldfaced, italic, red font with the word "Avoid" next to pramipexole and its ilk.
I understand that some advocate "holidays" from dopamine agonists and that, thereafter, the further use somehow will rejunvenate its supposed therapeutic benefits as to RLS. In my opinion, that is akin to a reformed alcoholic who experiences drunkeness after a single shot of whiskey following 20 years of abstinence. Further--and in my own experience--once having augmented on a dopamine agonist, the efficacy of certain other RLS medications (e.g., pregabalin, hydrocodone, tramadol among them) may for compromised at least temporarily.
What to do? In my case, after about nine months of "being clean" from pramipexole, my new physician last week began a conservative dose of pregabalin (1 x 50 mg each evening). Meanwhile, I am titrating my remaining supply of tramadol from over 20 years of 2 x 50 mg AM, and 2 x 50 mg PM, to where I now am down to 1 x 25 mg tramadol three times daily.
Conceding for the sake of argument that the pregabalin hasn't yet "kicked-in," my daytime RLS--without the cursed pramapexole but while still taking some tramadol--is substantially less than it has been in years.
My tramadol reserve is limited because it cannot be renewed. Hopefully, by the time the supply of tramadol is exhausted, the full benefits of pregabalin will have kicked in.
In a separate post--perhaps later today--I will post a comment in which I express in further detail my thoughts on what I believe to be medication-induced idiopathic RLS v primary RLS,
Hope you favorably resolve whichever way you go. Be well.
How long you were on Pramaprexol? How long was the vacation away from it? What dose are you taking?
I was on Pramaprexol for 17 years and augmented last March, so I have been off for 9 months. Tried many other drugs, but Tramadol was the most effective with least side effects. I still hate the side affects and would love another 17 years with Pramaprexol. At this point, I am too afraid to return to Pramaprexol because withdrawal was too severe.
I have RLS all the time, take an opiate 3 times a day 10 milligrams and 2 Pramipexole at about 2:00 in the morning. I will do that for a week the I take the 10 milligrams break them in half so there are 6 times a day I can use them and I will stop pramipexole for several days the use them the rest of the week in the afternoon. Breaking everything up and moving it around fools my body. I still get it and it is hard but the alternative is walking straight 24 hrs a day for days till my body goes into a light coma and I sleep for 24 hrs then wake to that wonderful squirming of the legs.
I have been on both Ropinirole and Pramipexole (not at the same time obviously) and had Augmentation with the Ropinirole. I've been off the DAs for about a year now and am on 300mg Pregabalin and 400ugm Temgesic. However this does give me a full night's sleep and I'm typically getting 3-4 hours a night. So when I know I need a good sleep for the next day then I will take a Pramipexole forupto 3 night's max. And no more than once a week. The other medication that can help is Zopiclone but again only for occasional use. I would never go back to a DA for full-time use but I think the occasional Pramipexole seems to work.I'd welcome the thoughts of others.
Hiya. I am going through Pram weaning. Similar story to yourself. It’s been hell on steroids and the last medication change by a doctor, who is not my GP, sent the RLS into orbit. However, I have started drinking one cup of Kratom tea before bedtime. I have not slept this well in I don’t know how long, AND, I have had virtually NO RLS, since I started drinking it. Do your research and make an informed choice but for me, Kratom is my new best friend and saviour. It’s only been a week but, man, what a blissful week after years of hell.
Thanks for this. I have just bought some Kratom powder. I have been on Tramadol for 6 months but I am experiencing tolerance and need to up the dose. So I bought Kratom to see if that could work in case I have to come off Tramadol. Can I make tea from the Kratom powder and do what you have done? How do you do that? I tried 1/4 teaspoon of Kratom in juice this morning - just to see if I can tolerate it and apart from feeling a bit spaced out I was fine. Is it normal to feel spaced out? I would appreciate any info you have which could help.
I augmented on 2mg of mirapx for 11 years. Ive been on methadon therapy for 6 years.- i use 0.125mg of mirapx before any forced confinement., car, plane, movie and find this works excellent.
- after using mirapx in this way i noticed that i can get a few hours sleep with a 0.125mg dose of mirapx.
- i will take 0.125mg of mirapx 4 days in a row then three or more day holiday.
- after 2 years of intermittant use i do not experience any signs of augmentation or loss of impluse control
- there is no science that says a person can live with as little sleep as i get. I suspect the 'hyperarousal' reported by RLS patients on methadone.
- the sleep justifies the risk
- we traditionally use the dopamine agonist with the philosophy 'if a little is good then more is better.'
- this philosophy is false
- less is more. Find a minimal maintenance dose . Never increase.
- any signal to increase dose should be considered as augmentation.
- if RLS symptoms increase it is prudent to take a 7-10day holiday
- never increase the dose beyond minimal maintenance dose
- i think intermittant use may be workable. Minimum dose. 7 days on. 3-4 days off. Or some variation on intrrmittant use. There is no science to guide intermittant use. Experimentation is called for. Maybe 6-7-8 weeks on. 7 days off.
- if augmentation or loss of impulse control arises it will be necessary to quit the experiment.
Ihad a rapid augmentation episode which included spread to my right arm, right leg and daytime episode. I stopped the Prami cold turkey and the augmentation symptoms resolved within a week, but the overall symptoms were increased for 6 weeks. Now at my usual level.
Hi, I found your post to be really interesting. I am on pregabalin at a dose of 300mg per day. Whilst it works 90% of the time for RLS I feel like I am in a coma. Was this your experience. Thanks Jacqueline
my experience exactly. I was slogging through the day, making a lot of mistakes in my reports, needing to takes naps. After 3 months of this it was either stop the med or stop working. I stopped the med. Same thing happened with Gabapentin.
You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses with gabapentin, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The equivalent gabapentin dose to 300 mg pf pregabalin is 1800 mg of gabapentin. Since you need more than 600 mg take 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. And then take 600 mg 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption of gabapentin.
Also, have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice.
Hopefully it will help. When you have completed the study take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
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