Premaprexole

[Piecrusl1]

I suffer RSL terribly I need help badly although it restless legs I suffer with my arms as well I am taking Premaprexole tramadol and quinine.nothing seems to work when I get the restless i have to get out of bed and walk around I can't sit and I can't lay down it's a continuous struggle it is affecting my mental health.I have had nights where I've walked around all night with no rest and it carries on all the next day an I have ha whole week with just cat naps .When I have these symptoms i think is it worthwhile going through this and other things as well I wonder if someone can suggest something

[ChrisColumbus]

Sorry to hear this. Can I first ask how long you have been taking pramipexole and tramadol? If you've been taking them for some time, both pramipexole and also sometimes tramadol can cause augmentation, which can mean that initially they help RLS but that eventually they effectively make things worse.Read the following about augmentation:

rls-uk.org/augmentation-reb...

Whether augmentation is the problem or not, others on here can guide you to better treatments for RLS.

[SueJohnson]

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

You are suffering from augmentation. Pramipexole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.

Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate 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. If you can't get an infusion, let us know and we can advise you further.

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. 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.

On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US - I don't know where you live and it would be helpful if you indicate your country and gender in your profile.) 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 divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 of pregabalin)." 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).

Have you had your ferritin checked? If so what was it? 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. 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...

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.

[Joolsg]

Welcome to the forum.We get one or two people EVERY day in your situation.

Pramipexole and other dopamine agonists cause RLS to worsen severely over time. It's called augmentation.

Follow SueJohnson advice and get off Pramipexole.

Read all you can, read all the posts headed Pramipexole or Ropinirole, and you'll see everyone is suffering an increase in severity of RLS.

Sadly, most doctors have no idea of the scale or how to help you get off Pramipexole.

Once through the difficult withdrawal, your RLS will be far less severe and you can then see which meds help.

Iron is first line treatment and a lucky few are med free after iron infusions.

Good luck.

[Elisse3]

Just to add quinine is used for cramps not RLS Did your doctor prescribe the quinine for you. ? It has a warning against it due to heart problems if my memory is correct. In the USA it’s banned from use apart to use for malaria.

[Piecrusl1 in reply to Elisse3]

Yes gp did prescribe it but not using after 2 weeks

[DicCarlson]

Augmentation is so counterintuitive - what, the drug that absolutely eliminated my RLS is now making it worse? Well, it is! This is a long video that might explain augmentation and it's relation to RLS. Good luck - there is light at the end of the tunnel!

youtube.com/watch?v=hkTP9fN...(Not working as expected?)

[Bieler]

I have suffered with RLS (undiagnosed for decades) and have tried it all. Horrific side effects from most. The only thing that helps me is tramadol HCL.

I take 50 mg morning noon dinner and before bed. Sometimes I need to take an extra one.

I initially was on 400 mg per day (max dose) but found I didn’t need that much. Made me tired. This dose spread throughout day keeps my RLS at bay and only get a glare up if I’m happen to eat something like Sucralose that aggravates it.

Since I was a child I suffered greatly. Later in life it went to my arms and it was brutal every night. Dreaded going to bed.

Everyone is different but I’m working seeing if you really need all those other drugs. I stumbled on tramadol and RLS in another forum and never looked back.

My dr gladly writes me a 6 month script as she knows how much I suffered. For me; it’s a Godsend. I truly hope you find relief. Please keep us posted.

[wildlegs]

I've had RLS for 25+ years and have tried many different drugs over the years. Tramadol has worked the best for me. I started with 100 mg 20 years ago and that worked great for about 7 years but then I started having leg problems again so my doctor increased the dosage to 200 mg and I've been good until I moved and had a hard time getting a doctor to prescribe 200 mg of Tramadol. The best I could get is 100 mg of Tramadol and 1 mg of Pramipexole. I would say it works 90% of the time. I'm still looking for a doctor who will prescribe 200 mg of Tramadol as that worked the best for me. Good luck !

[Maureen133]

I'm so sorry about your suffering,but i can relate to that.I take 2 tramadol and 1 Ropinirole @10am,1 Ropinirole @2pm,1 Ropinirole @ 6pm and 1 Ropinirole and 2 Tramadol @10pm.Iv'e not had much trouble for ages.

[SueJohnson in reply to Maureen133]

Ropinirole has worked for you for 7 years, but do be aware of the signs of augmentation which 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.

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[Ducatidave]

hi. Please, please look at your diet. Cut out salt, caffeine and alcohol. Ref back to my posts. Salt has a massive effect and it’s in processed foods, cereal etc.