Christopher

[Migennes]

Hi there. Thank you for letting me join the group. 6 years ago I was diagnosed with stage 5 kidney disease and am on regular dialysis. I have since developed restless leg syndrome which has got steadily worse. Pramipexole was prescribed but honestly doesn't help much. As soon as I sit down to relax it starts. Any advice would be appreciated. Thanks Chris

[Joolsg]

Sadly, RLS is common in kidney disease.Pramipexole is no longer first line treatment because of the high rates of drug induced worsening.

Gabapentin or pregabalin are better first line treatments.

Iron therapy is first line treatment and iron infusions the quickest way to raise serum ferritin.

Can you ask your doctors to arrange an iron infusion?

I do hope you find a kidney donor. The RLS disappears after transplant.

[Migennes in reply to Joolsg]

Thank you so much for that advice. I will contact the Dr . Unfortunately I'm not eligible for transplant!

[SueJohnson]

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

I'm glad pramipexole didn't work because it and ropinirole (requip) are what are called dopamine agonists (DAs) and are no longer the first line treatment for RLS.

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 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. 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). 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...

A caveat to the above. With kidney disease gabapentin and pregabalin amounts should be kept low and you should be carefully monitored for adverse effects, such as mental confusion and falls. Doses should be adjusted for renal dysfunction. In patients older than 65 years, initial daily dose should be reduced (gabapentin, 100 mg; pregabalin, 50 mg) since they are eliminated primarily by renal excretion, adjust the dose in adult patients with reduced renal function. However mental confusion is a normal side effect so give it time to lessen or go away and stay on the low dose until it does.

Don't take magnesium.

High calcium levels which are common in kidney patients may make RLS worse.

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, 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.

[SueJohnson]

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[Migennes in reply to SueJohnson]

Thank you for the responses! I'm 78 and live in the UK

[Migennes in reply to SueJohnson]

Sorry I'm male!

[Madlegs1]

Take on board all that has been advised, especially the warning about DAs.

However-- I have my usual query-- Pramipexol is extremely good at relieving rls-- so if it didn't work, the there are 2 possibilities,.

1- you don't actually have RLS? What are your symptoms?

2- your dose wasn't high enough to be effective. Prami should be titrated up until effective. Then promptly thrown in the bin. At least it has done it's job ,within a week. If that course is followed.

Good luck.

PS - I gather you are still on Pramipexol?

[Migennes in reply to Madlegs1]

Yes prescribed by the Dr. I take 4 each night and 5 when going to dialysis...otherwise it's really bad!

[SueJohnson]

I thought since you said it didn't work that you had stopped it, but I see from your reply below that you are still taking a reasonable dose. I am also confused by your saying "and 5 when going to dialysis...otherwise it's really bad! " which implies that it does help which probably means you do have RLS. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

Assuming you do meet all of these it sounds like you are suffering from augmentation although it is also possible to experience augmentation even if you don't have RLS. 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. In your case at 4 tablets you are already at the maximum dose and 5 tablets is over the maximum dose.

Unfortunately that means you have to come off it. To come off pramipexole, reduce by half of a .088 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. Opioids and kratom may be problematic for someone with kidney disease but cannabis is safe and may actually help CKD. One source said it is best smoked. and another said it should never be smoked. In any case discuss these with your doctor.

[PaddyMac1]

my advice is to get off this platform, nobody here is qualified to give medical advice . Lots of fear mongering about worst case scenarios. Try another doctor who specialises in RLS.

[707twitcher in reply to PaddyMac1]

What is your axe to grind? Probably safe to say that most of us found our way to this site because of the frustrations we've experienced with a medical system that pays little attention to RLS, and frequently does more harm than good. Being an educated, informed patient should be everyone's goal. And this site does more to educate and inform than any RLS source I have found.

[PaddyMac1 in reply to 707twitcher]

I have no axe to grind and I apologise if my comment upset you. It seems you have an axe to grind with the “medical system”.

I was simply contacted by this platform suggesting I may be able to help with Migennes question. See below

Looks like you have experience with Pramipexole, can you help Migennes

I gave my honest opinion based on my experience here.

I know many doctors are not very familiar with RLS and that is frustrating but I sought out a specialist who was able to help me.

Seeking medical advice from people who are not qualified is not advisable. This forum should be for emotional and friendly support not as an alternative to consulting qualified physicians.

[Joolsg in reply to PaddyMac1]

That would be true if RLS were taught at any stage in medical training. It isn't. We have seen some appalling advice on here from top neurologists. One advised his patient to switch to another dopamine agonist when she told him she had lost thousands to gambling. Impulse Control Disorder is common on DAs and his advice was criminally negligent. So of course the people on her do not trust the advice of doctors or neurologists. There are only a handful of doctors I trust. Only one is in the UK. Until they learn about RLS and read as many research articles as we do, why on earth would we take their advice?

There are more experts in the USA, but this is a UK website. There are a handful of neurologists and sleep specialists who are up to date. Even the "so called" top RLS clinic refuses iron infusions because they do not think there is sufficient evidence to support it. That is patently incorrect. Hence the need for medical advice on this forum.

The Mayo Clinic algorithm contains the best treatment and most members on here follow that.