RLSXX76

[RLSxx76]

Anyone any tips on dealing with RLS had it for years but with underlying health problems sooooo weary with it now.. tried Ropinerol ended up with Odema on Pramiprexole now but making me feel sick so have to see what else the Dr can advise. Have tried Tonic water. All sorts really it's very bad now any tips

[SueJohnson]

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

You need to get off the pramipexole.

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) 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.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls 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. 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 1-2 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, 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 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? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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(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.

[RLSxx76 in reply to SueJohnson]

Taking Co codemol for arthritic pain and thyroxine 150ml daily thats it will contact dr next week

[SueJohnson in reply to RLSxx76]

Take your thyroid medicine at least 4 hours away from any medicines that contain aluminum, calcium, iron, magnesium, simethicone, or sucralfate even in a multivitamin.

If you find you also have edema on either gabapentin or pregabalin try the other one. Although they are basically the same drug and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.

[RLSxx76 in reply to SueJohnson]

Thanks I take my thyroxine In the morning I'm just weary with this now I will definitely contact the dr next week I have had a couple of really bad nights this week but good to know about this site which I came across by chance

[Joolsg]

I second SueJohnson advice.Don't waste your time on tonic water. It won't do anything for RLS.

Get off Pramipexole very slowly.

Raise serum ferritin and possibly start pregabalin or gabapentin, BUT they also cause oedema, so a long half life opioid may be preferable. But first get serum ferritin levels above 200ųg, as that can resolve the majority of RLS cases.

Your GP will not know anything about RLS because it isn't taught in the UK.

[RLSxx76 in reply to Joolsg]

Thank u both for the advice will contact Dr next week this is such a wearying condition I get quite depressed with it and you cannot explain it to someone who doesn't have it