I'm desperately in need of help for my mum.

[Robinstan]

My mum is 89 on chemo, plus she has dialysis 3 times a week. She's also got AF and leg ulcers. She's been on pramiproxal for years and still suffers with RSL. The GP took her off that and put her on quinine but this doesn't do anything for it. They now want to take her off quinine due to the kidney failure but is not suggesting any alternative medication. She's just called me in a frantic state as she's on the dialysis machine and got the fidgets. Can anyone give me some advise please she's not sleeping at all. Thank you X

[Joolsg]

Can you confirm that she's currently not taking ANY medication? Presumably she went through a tough withdrawal when the doctor switched her to quinine?First, change doctor. Quinine causes hearg failure and as she had AF, that was a POOR decision, especially as quinine is NOT a med that treats RLS.

Your mother will need specialist advice from her kidney specialist. RLS is VERY common in kidney disease.

Your mother will need full iron panel blood tests and probably an iron infusion if her serum ferritin is below 100ųg/L, but the kidney specialist must approve/arrange that.

First line medications are now pregabalin or gabapentin but they take 3 weeks to become effective.

Low dose opioids like methadone and Buprenorphine work straight away but have to be prescribed/approved by specialists.

So, her best treatment options right now are probably an iron infusion and Buprenorphine but the kidney and heart specialists will need to confirm they are safe to take with the AF and kidney disease.

Oh and can you please tell us which country she is in and ALL current meds, including OTC meds.

[Madlegs1]

So sorry for her situation.

Her doctor must have qualified around 1950s -- quinine has been banned for ages because of danger to heart conditions.

It also has no effect for RLS.

If the doctor took her of Pramipexol cold turkey-- he should be struck off.

Certainly needs a good talking to.

Opioids would be the only quick fix for her-- if she is able to tolerate any of them.

I'll let others come in to advise better.

Wishing you all the very best.

[RiceyRiceRice]

I'm really sorry for your mother.

A study on methadone in cancer treatment was recently started in Ulm, Germany.

Unfortunately, I have only found articles and reports in German so far.

In laboratory tests, however, it was shown that the growth of the tumor was slowed down by the methadone and in some cases the tumor even shrank.

In addition, many doctors in Germany prescribe methadone for tumor pain.

You might find something if you google methadone and cancer treatment.

[SueJohnson]

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

I agree with what everyone else has said, but let me elaborate.

Has she had her ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When she sees her doctor, she should ask for a full iron panel. She should 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. She should have her test in the morning before 9 am if possible. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her 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 her transferrin saturation to be between 20% and 45%. If her ferritin is less than 100 or her transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

She should ask him/her to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 100 mg (50 mg pregabalin).] It will take 3 weeks to be fully effective.

After that she should increase it by 100 mg (25 mg pregabalin)every couple of days until she finds the dose that works for her. She should take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If she needs more than 600 mg, she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. (She doesn't need to divide the doses on 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 she takes magnesium she shouldn't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and she shouldn't take calcium within 2 hours for the same reason (not sure about pregabalin).

Have her check out the Mayo Clinic Updated Algorithm on RLS which will tell her everything she wants to know including about its treatment and refer her 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...

If she can get methadone or any opioid, she wants to be careful about taking it with gabapentin or pregabalin as both can cause breathing difficulties. Most don't have this problem but she should go slowly watching for this and take 4 hours apart.

If she has an abnormal lipid panel should be monitored while taking gabapentin as gabapentin can lead to a rise in LDL levels.

Since she has kidney problems while on gabapentin or pregabalin she should be carefully monitored for adverse effects, such as mental confusion and doses kept low.

If she takes magnesium since she has kidney problems it can cause excessive accumulation of magnesium in the blood.

High calcium levels in the blood are common in kidney patients and may make RLS worse.

Since she needs something to control her RLS Methadone, Oxycodone and hydromorphone can be safely used, but adequate dosage adjustments are required in CKD. Buprenorphine can also be used and has the advantage of lasting 24 hours like Methadone. (Morphine and codeine are not recommended).

If she is taking a beta blocker for AF it can make RLS worse. Clonidine, a blood thinner can actually help RLS.

Also instead of taking gabapentin or pregabalin, she might try dipyridamole. It helps blood clots from forming. She might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If she gets headaches they tend to disappear or lessen after around 5 days.

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, 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, 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.