I said I'd update the forum with my efforts to get an iron infusion. I'll start with the bad news which is that the neurologist at Newcastle has said they won't do an infusion for a patient who doesn't live in the Northern region which is sort of understandable but frustrating because infusions are not currently a commissioned service in the Midlands where I live. This is also similar to other hospitals e.g. St Georges in Tooting who I understand will only do infusions for local patients. I'll now be following up a private infusion.
The good news is that I still have a supportive GP who referred me and that Newcastle did get back to me with a considered response although they said they didn't think it was clear an infusion would help and instead suggested some low dose gabapentin 100mg just before bed could help and should avoid daytime side effects. However having been on 300mg pregbalin with no noticeable improvement and in light of the normal recommended gabapentin doses for RLS being much higher I suspect this wouldn't work. Many other consultants are quite clear that raising iron levels significantly can help so I will continue to pursue this route.
The other takeout is that Newcastle do seem to at least be reasonably aware of RLS so if you are in that catchment it gives a way forward although in this case I think the advice was probably ineffective.
Part of me thinks I have very little to lose by trying gabapentin, but even if it did work, I'd still rather be fixed by an infusion which sorts out an underlying iron problem than by taking a drug for ever which compensates for not fixing the iron problem and could have side effects. I'm aware that iron infusions only have a 60% success rate so I may be on the gabapentin one day ...
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Munroist
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I am not on pregabalin now but have taken that amount in the past with no perceptible improvement, although my RLS was at an earlier stage and I wasn't aware of it in the same way. I agree we need to standardise the approaches and iron seems such a simple first step as it directly addresses one of the major causes of RLS and can avoid embarking on multiple drug therapies which will probably have to be there for life and which frequently have unpleasant side effects.
I also live in the Midlands & am on the 1st rung on the ladder with regard to RL treatment & prescribed so thankyou for outlining the catchment area restrictions re iron fusions & the gabapentin debate which I will be monitoring closely.
You may have seen this on other posts so forgive me for repeating it in that case but just in case you haven't:
You don't want to ask for an iron infusion unless you need it. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 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) or pramipexole (mirapex) unless there is some special reason s/he feels you need it. 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. Beginning dose is usually 300 mg gabapentin (75 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 of gabapentin and pregabalin 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 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 uptodate on it at Https://mayoclinicproceedings.org/a...
The reason some people find that gabapentin or pregabalin doesn't help is they have been on dopamine agonists for many years and their dopamine receptors have been damaged so that gabapentin and pregabalin don't work. Another reason is that they don't take enough of it.
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, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, 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, 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.
Hi Sue, thanks for the reply. My ferritin after a recent fasting blood test was 141. I’ve gradually raised it by taking iron bisglycinate and have seen some improvement in my symptoms, less intense sensations and waking fewer times. I want I get my ferritin up significantly to around 300 ish to see if that benefits me and it will become increasingly difficult through oral supplementation due to the action of hepcidin. If i am one of the 60% for whom it works then correcting an iron deficiency is a lot better than taking drugs for the rest of my life which try to compensate for that deficiency and have side effects. My TSAT% was 38% which doesn’t give me a huge amount of headroom but that will be validated in the initial consultation. There is a problem with the Mayo Algorithm where it doesn’t recommend infusions for people with ferritin over 100 but if you are between 75 and 100 it’s fine to have an infusion which may take you up to 300 or over. Doesn’t make sense does it? I’ve emailed Dr Buchfuhrer about this and he has said it’s not a hard and fast rule. I also listened to a talk by Professor Matthew Walker of University College Hospital where he explained iron’s crucial role in RLS and emphasised the need to put iron therapy first. I also had a private consultation with a UK neurologist who agreed that raising my iron to supra-normal levels could lead to improvement.
If I turn out to be one of the 40% for whom infusions are not effective then when my RLS gets sufficiently bad I’ll consider alpha-2-delta Ligands but previous experience seemed to show no benefit. Dopamine Agonists are not something I intend to try.
Actually my reply was to SwimLyn. Yes you definitely want to try an infusion since you saw improvement from raising your ferritin so there is hope that getting it up to 300 or more will help significantly and I will cross my fingers for you that it does work. It's a shame you can't get it through the NHS.
I think the reason they recommend infusions between 75 and 100 is they are so fixated on 100 and after 75 iron isn't absorbed as well from tablets but obviously that applies after 100 too. And as Dr Buchfuhrer said it is not a hard and fast rule. I don't see anything where they don't recommend infusions if one's ferritin is over 100 other than they don't seem to feel it is necessary to raise one's ferritin over 100. Ridiculous.
If 300 mg of pregabalin didn't help you it is unlikely gabapentin will as that is equal to 1800 mg of gabapentin and increasing above 1800 mg would mean taking it in no more than 600 mg doses 2 hours apart four times which would be ridiculous. You would be taking your first dose 7 hours before bedtime. I wouldn't even bother trying.
Wow Sue now that's what you call a reply ! Thank you so much for all the information & advice & will certainly keep it as reference & show my consultant.@ next appointment.
Sue- Ihaven’t had a chance to read up much on this, but there is some evidence the higher levels of iron in the brain are associated with increased risk for dementia.
I read the article on this and admit to not understanding most of it, but the key takeaway I got was that it was a disorder in iron metabolism that caused this. Obviously much more research needs to be done.
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