augmentation

[Sunlizard]

I am now taking Mirapex as well as Pregabalin for my severe RLS. I had to stop using Sinemet because of the augmentation and now I am beginning to suffer the same with Mirapex. I am having occasional outbreaks of RLS in the afternoons and early evening . I cannot predict when this might occur. It is very frustrating. Any suggestions ?

[SueJohnson]

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

Yes - it is not surprising as they are both DAs and as you correctly figured you are suffering augmentation and need to come off it.

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)(ask for a prescription of these if needed) 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.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

The beginning dose is usually 75 mg pregabalin [If you are over 65 and susceptible to falls the beginning dose is 50 mg .Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks 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.

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 200 to 300 mg pregabalin."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 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 one dopamine agonist after you augmented on the first 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, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

If your doctor won't listen to you let me know where you live in Canada and I may be able to provide you with the name of one who is knowledgeable about RLS.

[Sunlizard in reply to SueJohnson]

Thanks for the information. I am currently out of my home base ( and my doctor) until April. I have meds with to cover the six months and I currently take 450 mgs of Pregabalin daily plus .25 mgs of Mirapex. I will request a full iron panel when I return and I will slowly eliminate the Mirapex. Hopefully the Pregabalin alone will allow me to sleep.. I very pleased to have found this page which so helpful as RLS information I have read previously haven’t answered my questions. I haven’t found that any diet changes or exercise (or none) have made an iota of difference. I have had this since my teen years but after menopause, it became much worse. I finally found relief with Sinemet (only 1/4 of the dose was enough to let me finally sleep after years of insomnia and walking the floor all night) but of course I soon needed more and then the augmentation began. So goes the tale.

[Sunlizard in reply to Sunlizard]

also I live in the Winnipeg area of Manitoba and see my gp regularly.

[SueJohnson in reply to Sunlizard]

Wow you are on the usual maximum amount of pregabalin although one can go up to 600 mg. I suspect after you are off Mirapex you will find the pregabalin controls your RLS. If so you will want to reduce it by 25 mg every couple of weeks (to avoid withdrawal effects) to find the lowest dose that will control your RLS. If it doesn't make a new post as there are other possibilities.

[SueJohnson]

Notice that the pregabalin won't help you much until you are off pramipexole and your withdrawal symptoms have settled. How much pregabalin are you taking?

[Joolsg]

Welcome Sunlizard.If you augmented on Sinemet, it's inevitable that you will suffer the same issue on any other dopamine agonist.

SueJohnson has given you excellent advice.

Unless and until you get off Mirapex completely, RLS will get worse & worse.

I wish you strength.

Please stick with the withdrawal, even when you think you can't go on.

Life after dopamine agonists is so much better and you'll realise how severe they made your symptoms.

[Sunlizard in reply to Joolsg]

thanks for the encouragement!