First post from a 40 year RLS sufferer

[Julesjewels]

I am a 69 year old woman struggling mightily to stop taking DAs. I am quite active and fit despite years of insufficient sleep. My life for the past 15 months has been defined by withdrawal from pramipexole.

I have been reducing my use of DAs (had been up to 3.5 mg pramipexole 15 months ago) due to augmentation and what I now realize was horrific care by an arrogant neurologist. I am now down to .50 mg and the journey is getting increasingly difficult. New neurologist (sleep specialist Weill Cornell NYC and much more competent than previous neurologist) has me reducing .0625mg at a time but even that is life altering requiring 2 weeks to adjust to this small taper. Symptoms break through earlier in the day, I can't sit for dinner, ride in the car for more than 1/2 hour, watch a movie, etc.., and additionally during the night, legs are aggressively activated and uncontrollable.

Currently take 300 mg Pregablin (split dose starting at 6 pm) and have tried to break up pramipexole dose to control symptoms starting at 3 pm. Totally exhausted. Opioids seem like another scary drug that will then require a difficult withdrawal regimen. Do they in fact stop the leg movements ? Aren’t they tremendously sedating? Quite reluctant to take opioids having seen 2 family members abuse them over the years and display disturbing mood/affect.

New Neurologist added the pregablin to help with leg movements as I taper down . Started taking 1/2 of a .25mg xanax when absolutely beside myself and/or small dose of THC gummy.

At this rate it will take another 6-8 months to get off the DA completely. That seems so long and has anyone taking .5 mg Pramipexole simply stopped the medication? Maybe a few days of deep distress would be better than this protracted schedule.

I have read suggestions to taper slowly but curious if others have adopted a different strategy to curtail the lengthy process. Many thanks.

[Madlegs1]

There are people who stopped cold turkey.

Not a nice experience.

But possible- if you do it in a medical facility with knowledgeable support. But they can be expensive.

Unless you are of an addictive personality, then you should not fear using low dose opioids to help with the agony of withdrawals.

They are really the only way to save your personality and life.

Benzodiazepines and Clonidine are alternatives, but I would reckon they are just as potentially dangerous.

Pregabalin will not help with the withdrawals, but may be a decent cover for when you have got off the DAs.

A lot will depend on how badly your receptors have been affected by the overuse of DAs.

All the best.

[SueJohnson]

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

The maximum dose of pramipexole is .5 mg so you were on 7 times the maximum and that was extremely cruel of your doctor.

You are reducing too fast. And the pregabalin won't help you while you are on pramipexole. Plus you may not need that much.

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 if needed.

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. 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, pramipexole and requip are no longer the first line treatment for RLS.

On the pregabalin, the beginning dose is usually 75 mg pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Normally you would 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 normally you would increase it by 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 of 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(salt), 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. It is a good idea to keep a food diary to see if any food make your RLS worse.

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.

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.

[Julesjewels in reply to SueJohnson]

Thanks Sue. I have read your recommendations and find them quite helpful. I am actually reducing by .0625 mg pyramipexole every 2-3 weeks and symptoms have worsened with each reduction. How do opioids work in aiding the reduction of DA dosage? Do they stop the leg movements or simply reduce the leg pain? While I do not have any concerns about becoming addicted to them, I have only observed friends/family using them post surgery. Seem to cause so much lethargy.

[SueJohnson in reply to Julesjewels]

That's 10 times too much to reduce by. Up to you but you will suffer more than you need to.

Opioid help both the increased RLS and the pain. Opioids can cause drowsiness but are more likely to cause insomnia.

[Joolsg]

There is a really helpful Opioid study by Dr Winkelman at Massachusetts General Hospital. It is proving that low dose opioids for RLS are safe and highly effective. Unlike when used for pain relief, tolerance doesn't happen and nor does addiction ( unless history of abuse).Most patients with severe RLS will need meds for life. Studies show opioids are effective for RLS even after decades of use. Of course we're dependent. But so are MS and Parkinson's patients.

So do consider using a low dose opioid to get you off Pramipexole.

How appalling that your previous negligent doctor prescribed 3.5mg Pramipexole! The maximum dose is 0.5mg.

Keep chipping away.

You will get through this.

[SueJohnson]

Is Dr. Daniel Barone your doctor at Weill Cornell?