I just discovered this wonderful site. I am 69, female, and live in Quebec, Canada. I have had RLS since I my youth and can identify with so many of your struggles. When officially diagnosed in my 20’s, I was prescribed clonazepam which helped for a few years. I then was referred to a neurologist and ran the gamut of gabapentine, levadopa, sinemet, etc., all which helped initially but soon resulted in rebound. A second neurologist recommended dopamine agonists and I have to say that for several years I was thrilled to have my life back. I was first prescribed pergolide which I took for 8/9 years until I discovered from my own reading that it was known to produce heart valve problems. My neurologist switched me to Pramipexole and have been taking it now for some 10 years. As so many of you have reported, my neurologist just increased my dosage over the years and I now take 1.75 mgs every evening. In addition, I am taking 1 mg of naltrexone which for about 3 years seemed to help and mean I didn’t need more Pramipexole. But as the story goes for many people, I am now in the state where I suffer from extreme augmentation and many of the symptoms that accompany it. This week I visited my GP who feels DA’s remain the best option, switching from DA addiction to opioid addiction is not acceptable, and that the addition of .5 to 1 mg of lorazepam to my drug cocktail is the best solution. He also suggested I return to my neurologist for any further counsel, even though I explained to him that his protocol has always involved increasing the Pramipexole.
Like so many of you, my wish is to try and get off the DA’s. But I have to admit I have no idea where or how to begin, and I am honestly too afraid to immediately stop my medication. I’d much prefer to attempt a slow reduction but I know I need something to supplement it with. I had severe RLS before starting DA’s. I am now taking perhaps 3 times more than I should for RLS, and I’ve been on DA’s for some 20 years.
I may have SIBO and I understand there can be a link to RLS.
My ferritin level (last taken in December 2023) was at 49 ug/L, which in my GP’s opinion is well within the normal range. I didn’t bother talking to him about the BBB level. I have never been given results for my TSAT level. I did try taking some ferrous bis-glycinate 20 (before bed, on an empty stomach) but stopped because it gave me intense stomach pain. I just read about the probiotic L-Plantarum 229v which I might try and get since it may improve iron absorption across the BBB.
I am also in the process of trying to connect myself with a neurologist in a private clinic. My hope would be that they are either already up to date on today’s recommended RLS protocol (Mayo clinic) or would at least be open to accepting it and helping me work through this. Unfortunately, I don’t even know yet if this is a possibility. I have submitted the initial forms they require but have not received any answer back.
I know so many of you have been where I am and have experienced some success in weaning off DA’s and supplementing them with either one or more medications. Although we all react differently, I would still be very grateful for any insight or advice you could offer me given my history and current position. Many thanks for reading this long post!
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Welcome to the forum. You will find lots of help, support and understanding here.
As you probably know from reading the Mayo Clinic Updated Algorithm which is what I assume you refer to - if not let me know, .5 mg is the maximum amount so you are taking 3 and a half times the maximum dose which is criminal that your doctor prescribed it,
When you say you took gabapentin for awhile and it helped and then it didn't, you probably weren't taking enough or in the right way so I will give you that in the following.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a.125 tablet (ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
The maximum amount of gabapentin is 3600 mg but anything over 1800 mg would be hard to take because of the 2 hours between doses so at that point you would switch to pregabalin where the usual maximum is 450 mg but you could go up to 600 mg, But you are a long way from there so just remember you can go to your portal to find this post when that time comes.
Do not worry about addiction to the low dose opioids that we use for RLS if that becomes necessary and they would be very helpful coming off pramipexole. People with RLS do NOT become addicted to them unless they have been shown to have an addiction personality.
Increasing the naltrexone may help you get off pramipexole but don't take it with a low dose opioid as it will block it.
Lorazepam will just help you sleep and won't help your RLS.
You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS. Since you didn't tolerate ferrous glycinate you need an iron infusion. If your doctor won't prescribe it you may have to go private. Don't worry about your TSAT as it is not common to be too high and if it is too low the iron infusion will help.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
I cannot thank you enough, Sue, for such a quick and thorough reply. I will print your response and have it with me at my next doctor's appointment. It will be of great assistance and support in making my case to wean off Pramipexole and find a substitute that at least makes my symptoms bearable and allows me some sleep. Luckily, I am already on the regular Pramipexole but I will need the prescription for the lower dosage which I will initially half. I will use your response as well as a copy of the Mayo Clinic Updated Algorithm. I will definitely check back in on this site once I have had a chance to begin this journey. Again, many thanks.
I'm so sorry that your doctors are so ill informed.How can your GP say dopamine agonists are still the best option. Clearly doesn't understand the mechanisms of augmentation.
DAs up regulate your D1 dopamine receptors. As you have spent decades on them, switching between different types, your D1 receptors will NEVER calm down unless and until you get off them completely.
Your doctors also have opioid bias and don't know the latest research and studies which show RLS patients do NOT become addicted ( unless theres a history of abuse).
You are on a criminally high dose of Pramipexole and should consider legal action for negligence.
Your serum ferritin is way too low. You need an iron infusion.
So, take legal advice, join rls.org to access Canadian help groups and to find a decent doctor.
In the meantime, follow SueJohnson withdrawal schedule.
Most of us have managed to get off dopamine agonists and are doing well on other meds.
I am so very grateful, Joolsg, for your support and advice. You and SueJohnson are both so informed on the subject of DA’s and augmentation, and your words are both validating and encouraging. This site is the first I have ever joined but I will certainly take your advice and join the RLS.org as well. You confirm my need to wean off DA’s as soon as possible, and I will also be following the schedule Sue has laid out for me. I’m anticipating it will be a rather tough journey, but as you both (and many others) have said, it is a journey worth taking. As I said to Sue, I will be back to share my experience with the doctors I have access to and the results of these new protocols as I follow them. Many thanks!
There is a fantastic website run by Dr Andy Berkowski in Ohio. He is President of the American Academy of Sleep Medicine and they have just relegatex all dopamine agonists to 'end of life scenarios'.Spend a few hours watching the webcasts and you'll see Augmentation is currently a pandemic. Hundreds of thousands of patients can't sit still and are suffering horribly.
Oh wow. I will definitely watch it. It is unbelievable that this has been allowed to happen, and that so many members of the medical profession continue to buy into the use of DA’s. I sure hope I will find someone here that will help me and that I’ll be able to get off them. Thanks Joolsg.
Try Kratom if it is legal where you live. it works very quickly and you could just use it while you are weening off something else. Unfortunately, not Legal in Australia so I am stuck with tramadol but I travel a lot and have used it myself.
Thank you Peter000. Really appreciate receiving your suggestion. I’m not familiar with Kratom. But I’ve just looked it up and it’s legal here in Canada for “research” but not personal consumption. One of those crazy rulings. I’ll look into it more. When you’ve had access to it, how did you take it and in what quantity? Did you use it to wean off DA’s or was it more just to control your RLS symptoms?
May I answer you? I used kratom during my long search for an effective medicine when I had exhausted all standard options.
Kratom works pretty fast, although single dosing doesn’t last too long (4-6h). For me the only ‘side effect’ was very mild withdrawal after daily use for several consecutive days. I think I counteracted by not using kratom for one day a week. (It has been a while). Also rotating strain helps to avoid tolerance when used longer term.
Best strain for RLS is red vein borneo, but I found other reds and greens also worked well. Start very low to get used to it and avoid as much as possible side effects. I started with 1/4 teaspoon. Mix well in some hot/warm water and gulp down. After a while I settled on 1/2 teaspoon early and late evening and sometimes another one in the night. You may need a bit more, as I usually get by with low doses (currently 5 mcg/h 7d patch buprenorphine). At some point I also took two 1/2 teaspoon doses white kratom during the day to help with my long lasting fatigue, and I found that the repeated dosing during the day and evening made nighttime dosing redundant.
Do look for older posts on kratom to get various experiences and advises.
I finally got a prescription for buprenoprine (sublingual pills 0.2-0.4 mg) and have been almost RLS free since.
Terrific details. Thanks! I wouldn’t have known where to start.
I seem to keep hitting a brick wall when it comes to finding someone here (in the medical profession) in Canada to support me and the latest clinical advice for DA augmentation. DA’s are still the most popular rls meds here so I’m on my own, so far, in trying to get off them. Greatly appreciate yours and all advice I’m receiving here.
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