Hi everyone, I've been suffering from RLS on & off for the past 15 years. It has recently become much worse and consistently shows up every night now. I've just learned from this site about taking iron supplement at night. 28mg seemed to work the first night but not for very long. I was encouraged that it at least gave me temporary relief. I took the second night off of the supplement and then doubled it the third night to 56mg. The effect was much the same as 28mg the first night. Short lived. I found a high dose "Feramax 150mg" which I will try next. Has anyone had any experience with higher doses like this?
Thanks.
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SergeantPepper
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Welcome to the forum. You will find lots of help, support and understanding here.
In case the iron doesn't solve your RLS let me give you my usual advice, Since you don't mention any RLS medicine on your profile, I will assume you are not taking anything.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. 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 and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...
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, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live
Thanks for all the info Sue. After a lot of research and testing, I do believe my RLS issue comes from oxalate overload. I notice oxalate dumping worsens my RLS. I read a very informative thread on here from "notnowdad" (I think) regarding oxalate and iron at night. The first night I took the iron I felt relief, so there is something to it. Thanks again.
Hi Sergeant, I'm glad you reported this to us. Many of us on here get immediate relief with iron (generally ferrous bisglycinate) by taking 28 to 56mg about 2 hours before bed, on an empty stomach. I’m beginning to see a trend that as we age the iron at night trick might need to be adjusted. I wouldn’t go much higher than 56mg. I’m not sure how you are able to take any night off since it gives relief in about one hour, for one night. The iron has to be taken on an empty stomach and then no eating whatsoever there after. Good luck!
In your experimentation, if you find something that works, please let us know. Welcome to the Ironman Club.
Btw, melatonin is a big no. Many medications, like SSRIs, calcium channel blockers and metformin, will make symptoms of RLS much worse than they have to be.
Hi like you i tried iron supplements ,magnesium,accupuncture inly for the relief to be short lived.My doctor prescribed Ropinarole wich worked for 4 months then i had to up the dose to 1.5 4 months later im on 2mg it seems all meds have a short time working and i live in dread of the day they stop but ive had 12 months of sleep (at last) so i urge you to speak to your doctor .This is the most horrendous disease only a fellow sufferer understands how awful it is i hope this gives you some hope good luck x
Please be aware that if you are having to increase your dose of Ropinirole then it’s likely you will soon suffer from augmentation which is where the drug starts to cause symptoms to spread to other parts of the body and to occur earlier and earlier in the day. This is a well understood and common outcome of taking Dopamine Agonists and can lead to a a very difficult time where symptoms become so bad that you need to stop the drug which results in a very difficult and often painful withdrawal. I would urge you to read up about augmentation and consider changing your medications before it becomes worse.
As Munroist said upping your dose leads to augmentation which since you have already increased it twice means you are already augmenting. I strongly suggest you get off it now while you are on 2 mg as the longer you are on it the harder it will be to come off it and the more likely you dopamine receptors will be damaged which means the now first line treatments and iron won't work.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. 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, Neupro 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 them 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 ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further. Https://mayoclinicproceedings.org/a...
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 don't feel it's being touted as a cure all, but along with Sue's comprehensive initial advice that is offered to every new member, it's an excellent starting point. I took it on board and within about eight weeks of taking gentle iron it worked for me along with the co-codamol I'd already been prescribed.
I'd never been on a DA and thankfully have not needed any further meds.
I'd rather try iron in the first instance to see if it helps before taking any of the medications recommended for RLS, with their various side effects both long and short term. In fact it would be remiss of anyone to not suggest it to an individual seeking guidance on treatment options. It doesn't work for everyone but in terms of doing least harm, it would have my backing, as well as that of any knowledgeable medical practitioner.
As restless leg SYNDROME is triggered/caused by different things for different people, so too is the cure different. For some, the 'cure' does really seem to be very simple and iron alone does help- at least for initial treatment. Time will tell if it continues to help long term (over a decade or so) but for those lucky enough for it to work, then good for them.
I'm not one of those people who could find a simple cure and suffer from refractory RLS and have tried almost all medication and diet regimes under the sun- to the point that I didn't feel there was much I could eat at all, and only one or two meds left to try! I was on DAs from the beginning 15 years ago and augmented for years while trying to find relief. Thanks to this forum, I've ended up on buprenorphine and very thankfully, it knocks it dead. I'm happy for some that iron alone helps and maybe one day we'll understand more why that happens for that group of sufferers. Meanwhile, maybe don't read the 'iron is the solution' posts if they annoy you too much. But let's not stop people spreading the good word if it works for them.
I'd like to try adding lactobacillus plantarum 299v to help maintain my iron levels. Can anyone who's already using it recommend a supplier in the UK? Getting my ferritin level up was successful for me but I can't take iron on an empty stomach so anything that helps absorption is worth a try. As I also have silent reflux causing throat problems, it's possible it might help with that too.
Here is a link to the product I use. BTW - severe RLS (zero sleep) was totally assuaged by iron supplements! Docs kept waving the Ropinerole at me - and I was almost ready to take it. Docs also said iron is fine. Finally reading on the Johns Hopkins Neurology website - RLS patients with Ferritin levels below 50 can benefit from iron supplements. My ferritin was 49 and supplements raised it to 100 in 3 months.
Thanks for that, I'll get some ordered and give it a go. Delighted to hear that supplementing with iron worked so well for you. I had very similar path to yourself. Having had pramipexole offered and declined, raising ferritin from 55 to 115 with iron bisglycinate in about two months dealt with the 3am RLS wake up call. I had already been taking co-codamol at night for another issue, that usually got me to sleep then RLS would break through with horrible regularity. I think that's about two years now, long may it contiue!
Thanks for the links Sue - I did try UK Amazon, lots of lactobacillus products but not the one we're after. The other links refer to Lactobacillus Plantarum but not the 299v variant and I'm not sure how important that is. I ordered the one that DicCarlson linked to (LP 299V) and it arrived this afternoon so I'll take the first one this evening (has to be taken with food). I'll report back after I've given it a go.
The second one I gave is to the Swanson one which is the 299V variant. It doesn't say that on the link but it is identical to the US one which does say it on the description. Looking at the first one I gave I am not sure about it so will delete it.
I have recently started taking this formulation. It's an Australian company so not sure if sold elsewhere (and it requires refrigeration). The company is a good one and it contains 20 billion cfu's.I have GERD /LPR but not using it for that purpose, just to improve iron absorption for RLS /PLMD. I wasn't aware it could help LPR also. Let us know how you get on with LB plantarum 299v?
Thanks for the link, unfortunately it doesn't appear to be easily available in the UK. The Plantarum 299V is due for delivery today, I'm happy to update on how I get on with it. It will hopefully help with iron absorption and any positive effect on the GERD/LPR would be very welcome.
I think the double dose nights are more restful. But it's somewhat random. Factors like occasionally walking late in the evening, which is not helpful, but stress also plays a role.
I just know that overall, I've had more success with a double dose on alternate nights than I did taking a single does each night.
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