Changes

[Cruiseships]

I have been on ropinirole for years but every so often Augmentation settled in and I stopped ropinirole and started pramipexole the next night with pramipexole 1tablet but never slept and had a terrible night, so tonight I took 2 pramipexole and instead of taking another pramipexole I took a ropinirole which hasn't made any difference and it's 4 o'clock in the morning and my legs are worse what can i do.Im in torture

[Madlegs1]

A bit like alternating your alcoholic drinks.

Those two meds are brother and sister.

You are being incestuous with your medicines.

Not good.🎇🎇🎇🎇🎇

You are augmenting.

Look up most any Sue Johnson's replies to many posts on this site --( my auto cue has this phrase on autopilot!)🙄

You are in for a rough new year -- so I won't wish you a Happy one, but do wish you all the strength and fortitude required for what you are about to experience.

All the best. ☘️

[SueJohnson]

You need to come off pramipexole and ropinirole.

Since you are suffering now I suggest you add half of a .088 [.125] tablet of pramipexole and wait until your symptoms settle. However don't be tempted to stay on it as you will augment quickly again

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. (Pregabalin is more expensive than gabapentin in the US.) 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 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the 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 and your symptoms have settled. 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 or magnesium-rich foods, 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 nor calcium-rich foods 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? 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 on the best iron tablets to take and how to take it.

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...

If you prefer to use ropinirole to come off it instead, add 25 mg 1st to let your symptoms settle and then reduce by 25 mg every 2 weeks.

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, low potassium. 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.

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.

[Joolsg]

As they're both dopamine agonists - they both up regulate D1 receptors and cause augmentation. You are just prolonging your suffering by switching between them pointlessly.The only solution is to get off both of them and never touch another DA.

[Bugsycat in reply to Joolsg]

After being on D A’s for years I’m now working towards coming off ropinarole. I was on 4mg. It’s taken me many months to reduce down to my present dose of 1.5 mg daily. My doctor has given me oxycodone to help this process. I’m already on gabapentin for neuropathy 1200mg 3 x daily. At present I take them a.m, 2pm and 9pm. Would I benefit from what you suggest Sue? My worse withdrawal symptoms are in the morning until I take my 2pm dose. I take 1mg of ropinarole at 2pm and .5 mg an hour before bed.

I’m determined to do this as I failed in the past

[Joolsg in reply to Bugsycat]

As you are already on gabapentin, and a very high dose, there's no point adding more gabapentin.The oxycodone will help- but you want to keep the dose as low as possible until you are completely off Ropinirole.

Well done for getting down to 1.5mg.

Once you are through withdrawal, hopefully the high doses of gabapentin will cover the RLS.

[Bugsycat in reply to Joolsg]

Thanks Jools. I didn’t mean to add more Gabapentin but to change the times I take it

[Joolsg in reply to Bugsycat]

That depends. You are prescribed those high doses for your neuropathy.But- do you Definitely have neuropathy?

Often doctors unfamiliar with severe RLS will diagnosis neuropathy.

When were you dx with neuropathy?.

How are the symptoms different to severe RLS?

If you have neuropathy, taking gabapentin 3 times a day is routine.

For RLS, you split the dose and take 600mg doses 2 hours apart.

As you're on 3600mg gabapentin you couldn't take that high a dose effectively for RLS.

So if you have neuropathy- you should continue to take gabapentin as directed.

If your doctor has mistakenly dx neuropathy instead of severe, worsened RLS because of Ropinirole- then you could switch to 600mg pregabalin taken at night only.

Once you've given more info, we can hopefully direct you better.

[Bugsycat in reply to Joolsg]

I was diagnosed after an abdominal operation trapped a nerve and despite them trying to put that right I was left with numbness on left leg and pain going down to my foot which felt like I’d been plugged into a socket. The pain was very bad

Totally different from my RLS symptoms. This is an uncontrollable urge to move or get up and walk or move my legs by stretching etc. some relief when my husband massages them hard and hot/cold showers helps also.

I get relief from RLS if I do a short walk. Anything too long makes symptoms worse.

[Joolsg in reply to Bugsycat]

Then you should stick to the advice of the doctor treating the neuropathy.However- gabapentin is poorly absorbed if you take doses higher than 600mg. So taking 1200mg in one dose is counter productive.

Dr Winkelman has done a video in which he says if you take more than 600mg in one dose, you may as well flush it down the loo.

Mention it to your doctor and pharmacist.

[Bugsycat in reply to Joolsg]

I will talk to him about it, thanks

[SueJohnson in reply to Bugsycat]

For RLS you would take take 600 mg 1 to 2 hours before bed and the second 600 mg 2 hours before that. Since that is not controlling your RLS you might want to try taking 100 mg from one of your doses for neuropathy and taking it 4 hours before that and if after a couple of days that still does not control it try 200 .

Even for neuropathy doses above 600 mg are not absorbed as well.

[art37]

I find elastic stockings very helpful. I wear a pair to the knee. Also have a peddle machine to peddle legs and keep moving.I take Sifrol but want to come off it as it makes me drop to sleep suddenly and i cannot drive and now need to. Cannabis oil and magnesium tablets. I suffer badly on the machine and even worse if it runs above 280.