I previously asked on this forum for advice for my husband in relation to a rls specialist in Ireland. This led to loads of great advice and knowledge in relation to the management of his severe rls as per Mayo Clinic Algorithm. He started taking magnesium glycinate 400 mg, Vitamin B12 and Vitamin D3 2000u daily and ferrous sulphate 375mg at night on an empty stomach 5 weeks ago. I am pleased to say for the first time in a year or so he is going to sleep and staying asleep all night. He still has PLMD and Rls but it’s way calmer and not waking him. We don’t dread the night anymore. I just wanted to thank the people on this forum who helped us, took the time to give very detailed information and advice, it is very much appreciated. He finished the ferrous sulphate so we bought ferrous glycinate and he’s taking 60 g of that at night since yesterday . I think he needs to go to every other night with the iron as Sue suggested on a previous post, he started probiotics L plantum V 299 today also to help absorb the iron. I know his condition could exacerbate again but we will take the sleep for now! I hope this post gives hope to others to keep trying and asking and seeking help. Thanks so much again.
Positive Update : I previously asked on... - Restless Legs Syn...
Positive Update
That's great--- long may it continue!☘️
That's great! So pleased for him.
Tnx Sue, he is taking the ferrous glycinate every night as with the ferrous sulphate before, should he do it alternate nights as previously suggested in relation to absorption? I think the recommendation is every other night but can’t find it! Tnx a mil.
Yes more is absorbed if taken every other day.
If your husband is getting any type of immediate relief with the iron then switching to every other night means he will get relief every other night. Should be an interesting experiment?
I'm certain Sue is correct, but like DesertOasis, my brain/body needs iron every night. I tried alternating, and every night I skipped iron, my RLS flared up and woke me between 3-5AM. After months of experimentation, I now alternate between one and two iron tablets. Taking less than that, I get RLS at night. Taking more than that seems to trigger hepcidin production, which flares my RLS for days. It feels like a delicate balance.
Hi Jerry, you and I have chatted before. I’m thrilled you are still getting relief all these years with your combo of drugs, including the iron. I think Mini will realize just how helpful the iron is to her husband when they experiment with every other night, as you have done.
Jerry, do you know what your ferritin is?
Sorry, I just saw your question. My ferritin level was 233.9 back in August 2023.
Yet you still need nightly iron. The reason is, RLS has little to nothing to do with ferritin and every thing to do with serum iron. Thank you for responding.
Great news! Thanks for the update. I have just bought a bottle of lactobacillus plantarum 299v probiotic so will be interesting to see how it goes for us both.
Hi Mini. Based on my hypothesis about RLS and iron, your husband should have had his best night’s sleep last night? What say you?
He’s still asleep, I’ll let you know!!!
Hmmm, he should have had a great night’s sleep that very first night of the ferrous glycinate. Wildly great… per my theory. 100% no RLS.
Fingers crossed it continues
Great news.
To solve the question of every other night iron or every night iron. Try both ways. Does he get definitely more relief from taking it every night? If so then take it every night. Otherwise take it every other night. Let us know.
Tnx Sue, that’s seems like a good suggestion, he is nearly afraid to change anything cause he’s getting sleep but he still has rls while sleeping so maybe every other night could improve things more. It’s very individual! Il keep you all posted.
The every other night will help raise his ferritin which in the long run could improve his RLS but won't improve anything that night. The reason I suggested to try both is that DesertOasis has found that for some people taking iron every night improves RLS that night immediately.
Yes, definitely try every other night. Tell your husband not to be afraid. If the 60mg of iron glycinate, he has taken the last two nights, has not given him at least near complete relief, then I don’t consider him an immediate responder. Ferrous sulfate never provided me with adequate immediate relief, so I could see why he wouldn’t get complete relief with the sulfate, but he should have with the ferrous bisglycinate.
Hi. I am very pleased for you that you seem to be on a positive road in dealing with your RLS. I am also from Ireland and have been suffering with RLS for many years. You mentioned that you had a consultation with an RLS specialist in Ireland. I would be grateful if you could name the specialist. I have recently been put on Pramipexole at a rate of 0.176mg two to three hour before bedtime. While the initial response was miraculous, I am beginning to feel some symptoms starting earlier in the day than was the case prior to starting the pramipexole. So I hope to have a discussion with my GP shortly and would like to go in armed with enough information.Best of luck with your new-found regime
🍀👍
You are suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. This means you need to come off it because will only get worse.
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.) 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)."
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.
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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist 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, 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.
If you tell me where in Ireland you live I might be able to give you the name of a knowlegeable doctor.
Thanks Sue for all that information. I live in the south east of Ireland but distance is not an issue. As regards my meds, I am already taking 2 x 75mg of Pregabalin, one in the morning and one at night. I also take 2 Ixprim at night. This is a combination of 37.5mg Tramadol and 325mg Paracetamol. I was prescribed both of those about two years ago for very bad knee pain at night. Even though I have had RLS for probably 20 years or more, my immediate concern two years ago was my knee pain as I wasn't aware of anything to treat RLS. They worked straight away and may have dampened down my RLS in the process because I was so delighted to get a full night's sleep. However the RLS symptoms started to increase again about a year ago hense my visit to the doctor two months ago. I have only recently had a full blood count done but when I asked about the ferritin level and the transferrin saturation I was told by the nurse that the ferritin level would be given but if I wanted more detailed results I would have to talk to the doctor. My feeling is that a discussion in this regard will be necessary. Again Sue thanks for taking the time to respond to my query.
Professor Bradley neurologist and his team at St James Hospital in Dublin - He is knowledgeable of Mayo Clinic RLS guidelines
Dr Timothy Lynch- associated with Dublin Neurological Institute. Prescribes opioids. He is knowledgeable of Mayo Clinic RLS guidelines
Many thanks for that. It's encouraging to know that such people are available in Ireland.
Sorry. I should have referred to your husband's treatment and appointment. My apologies. 🙏
Hi there, I wrote previously looking for a specialist in Ireland but unfortunately there does not seem to be one as such and we have not seen one. My husband does see a neurologist but she is not rls up to date. Like you, my husband was previously on pramipexole and while he initially had good relief he developed augmentation from it. This meant he had to come off it and it was very difficult as we had no medical support initially doing it and he had a very rough time. He is now off the pramipexole with the help of high doses of gabapentin but he eventually weaned off that due to daytime sleepiness and brain fog. He is off pramipexole nearly 18 months but his rls has been severe up to 6 weeks ago. I got advice from this forum about magnesium citrate, and oral iron supplementation and read all the resources on rls.org.uk. I added in vitb12 and vit d3 also and probiotics l planetarum v299 and he seems to be sleeping much better. It’s early days and we know that this condition can change for lots of different reasons. I do wonder if he is doing better now with the iron and supplements because his neurological system has recovered from the augmentation. He had tried oral iron, magnesium previously. It would probably be better for you in the long run to get off the pramipexole and try other meds such as gabapentin but someone more qualified than me could advise you on that process. Y best advice is to follow the pramipexole wean as described here previously as it is a difficult drug to get off. Wishing you the best of luck and sleep and I will let you know if I find a specialist in Ireland!
Thank you Minijackrussel. I will certainly take your husband's experience on board and wish him all the best and I hope he finds the holy grail in relation to his RLS.
He probably needs a low dose opioid.
If you live in the Republic of Ireland see my answer to Invegg.
If you are in Northern Ireland Dr Jamie Campbell, is in Kingsbridge private hospital, Belfast and does prescribe buprenorphine.
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