Augmentation and how to move on.

[TonyLewry]

Hi

I have kidney failure and am on dialysis 3 times a week. I have severe RLS.

My specialist has prescribed me 100mg Pre Gablin together with 0.44mg of pramipexole daily.

I have, over a period of 3 Months been increasing my dose of pramipexole from the minimum to where we are now. The combination has worked for most of the time, but I now believe augmentation has set in, and due to my kidney failure I cannot go any higher with my tablet dose.

Does anyone have a recommendationas to what to do next?

Many thanks

[SueJohnson]

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

To come off pramipexole, reduce by half of a .125 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. Morphine and codeine are not recommended for kidney problems. Oxycodone, Hydromorphone and buprenorphine are OK. Some have used cannabis temporarily to help. I don't know if this is OK. Don't use kratom. But in the long run, you will be glad you came off it. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is.

I'm not sure when you say Pre Gablin whether you are referring to gabapentin or pregabalin so I will give you both. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). However with your kidney problems although I will give you the usual advice, it is important to keep the doses low and be monitored for adverse affects such as mental confusion and falls,

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. However again with your kidney problems you should check with your doctor about taking magnesium. You probably shouldn't take calcium and in fact should have your calcium levels checked but if you do 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 especially important for those with kidney problems. 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 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 and is important for your kidney problems. 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 uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a... It also has a section on kidney problems.

Meanwhile 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.

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

[Bumble34 in reply to SueJohnson]

Sue,

Unless I misunderstand, Tony is already on 100mg of Pregabalin, and perhaps has been for some time.

[SueJohnson in reply to Bumble34]

That was what I was unclear about as he said Pre Gablin.

[TonyLewry in reply to SueJohnson]

Thank you so much for your very full reply. Yes My current dose is 100mg Pregablin. I will print this reply off and have a "chat" with my specialist about some of the points you have raised.