58 year old male. I have an appointment with my primary care physician to discuss alternatives to pramipexole. I've taken it nightly for 15 years, probably the last 10 at 0.5 mg. I believe I have the symptoms of augmentation: earlier onset, spreading to arms, decreasing efficacy. Occasionally I have forgotten to take it or been without it, tossing and turning all night with only brief minutes of sleep. When I complained about it to a previous PCP in 2021, he prescribed gabapentin but with no instructions on how to make the transition. I was taking both for a while but couldn't tell the difference so stopped the gabapentin after maybe a month? (I also had a bradycardia episode around that time requiring a pacemaker and thought it might have contributed but have found no evidence of that). I also take levothyroxine for hypothyroidism. Ferritin level is 44.
My plan is to share the recommended treatment protocol from the Mayo clinic that has been widely shared here. Is there anything else I should ask or bring up to my doctor? My current PCP has been very helpful with my other health issues and seems to treat the whole person rather than just the symptoms, so I am hopeful.
New to the forum and thankful that I stumbled across it. Had a similar experience with pacemakerclub.com which was very helpful with my questions about that issue. Grateful for all the knowledge and experience shared here.
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As you are in the US, I think you are more likely to have a PCP that is willing to prescribe opioids. The standard advice about weaning off pramipexole generally says that opioids are a last resort to help wean off DAs. My personal experience is that using buprenorphine immediately (when first starting to taper down) helped speed up my transition off pramipexole to two weeks, and didn't have me in misery during that time. I understand a general reluctance to take opioids, and a desire to find a non-pharmacological RLS treatment. But I'm also a believer in minimizing suffering. Most of us who were on pramipexole a long time are not going to respond to gabapentin or pregabalin due to damaged dopamine receptors anyway. So unless your RLS magically disappears after tapering off pramipexole (it does apparently happen for some people...), you are likely to need to use opioids long-term to keep RLS at bay.
As others will tell you, your ferritin level is low, and iron supplementation is likely in order. But you need a complete iron panel showing saturation % to see if supplementation is appropriate. I am one of the unlucky few who has a saturation % close to recommended maximum (45% - ish), so I cannot supplement iron even with low ferritin.
Levothyroxine is a RLS trigger for many, so you might see if there are alternatives.
Welcome to the forum. You will find lots of help, support and understanding here.
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 .088 [.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.)
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. 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, 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 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 reason the gabapentin didn't work before was because it doesn't help much when you are on a DA.
Do you have your TSAT (transferrin saturation percent) that 707twitcher mentioned? If not I wouldn't worry much about it as it is not common to have too high a TSAT. Next time ask for a full iron panel which will give you that.
For your ferritin: Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. And it will help in getting off pramipexole.
If you can get an iron infusion that would be the quickest way to increase your ferritin.
If you can't get an infusion, then if you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours.
It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible.
Levothyroxine is not a RLS trigger but many people have both RLS and hypothyroidism.
Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron, magnesium. DAs like mirapex inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism (high TSH) can make RLS worse so want to bring it up. Individuals with hypothyroidism may have prolonged and exaggerated responses to opioids.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, 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, fennel, 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
Thanks for the in-depth responses. I have not had a full iron panel--I will ask about that and supplementation. I am not on the extended release pramipexole. I do take magnesium along with fish oil, vitamin D3/K2, and a multi-vitamin with dinner. Magnesium cream can take the edge off RLS if we attend a concert or other activity involving sitting in the evening. I run 2-3 miles 3-4 times per week, do stretching/yoga, weight training with dumbells, and walk at least a mile most days. I have a standing desk that I use frequently in the afternoons. I am generally on a low carb diet, limited sugar, and don't drink coffee after about 10 am, and almost never drink soda, but I do have a glass of wine or two on weekends. All of the above seems to help some but is not enough by itself for sleep.
I do wonder about the link with hypothyroidism. I have never noticed any symptoms related to that and was diagnosed solely from a blood test a few years after I started taking pramipexole. I take the levothyroxine in the morning and usually exercise in the morning.
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UPDATE: RLS, magnesium, calcium and hard water
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