Iron Infusion for RLS in England - need recommendation

[tarrynws]

Hi, has anyone had a good experience with a doctor based in England (preferably in the south or London) for an iron infusion for RLS. Am wanting to make enquiries and will need to go private. Thanks

[Joolsg]

Prof Toby Richards at the Iron Clinic in Harley Street. He will do infusion for £800..But first get your NHS full iron panel, morning, fasting blood tests and forward to him.

theironclinic.com/

[Dotmowatee]

I live in the South West and my haematologist is excellent. After referral he arranged an iron infusion. I insisted when I saw my GP and it was arranged.

[tarrynws in reply to Dotmowatee]

That’s interesting, where do you live? I am also in the area close to Bournemouth. What was the name of the haematologist?

[Dotmowatee in reply to tarrynws]

I am in Plymouth, his name is Doctor Wayne Thomas. He was very knowledgeable about rls. My GP referred me after I insisted.

[El-Farash]

Hi I’m waiting to speak to my consultant about having iron infusion it’s meant to work

[Bantamdyno]

Why do you think iron will help? It's not, try wearing tubular support bandages from boots at night you will most probably get different sensation but not as bad as rls, your legs may feel much better in the morning but do not wear all day.Could you run far in your teens🤔

[SueJohnson in reply to Bantamdyno]

See the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... for how iron infusions and iron tablets will help or were you just being funny

[El-Farash in reply to SueJohnson]

Hi Sue you could also try RelaxLegs Restless Legs Relief - Ideal Magnesium Spray for Restless Legs & Cramp Relief for Legs, it helps me a bit not much

[SueJohnson in reply to El-Farash]

My RLS is completely under control with gabapentin.

[El-Farash in reply to SueJohnson]

Is that all you take is gabapentin,

[SueJohnson in reply to El-Farash]

Yep 1500 mg in divided doses.

Welcome to the forum by the way. You will find lots of help, support and understanding here.

You are trying to get an infusion but have you had your ferritin checked? If so what is it. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them 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). 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 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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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 as you are already doing, 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.

[El-Farash in reply to Bantamdyno]

Everybody is different, my legs constantly feel like they got creepy crawls in all day long there is no rest from Rest Leg Syndrome I have started RelaxLegs Restless Legs Relief - Ideal Magnesium Spray for Restless Legs & Cramp Relief for Legs it’s ok, I’m having more blood tests done full vitamins check full blood count to see if I’m lacking of any vitamins

[Cathm1]

the iron clinic in Cambridge which Dr Klein runs is excellent and I’ve had two infusions there now

[El-Farash in reply to Cathm1]

Hi how did iron infusion go did or does it help