PLMD and restless legs

[slim1953]

Hi. I have had plmd since i was 25. I am now 71. Before diagnosis and medication i was getting a spasm a minute for up to 8 hours. Took years to diagnose. Now on Ropinirole and oxycodon hydrochloride. It is a condition that destroys lives. Its hereditary and my daughter also suffers with it. My legs are sore and stiff. Right knee is gone. Two operations on my back and diabetes type 2 with insulin control. This condition destroys families. The constant pain gets you down. If you suffer i wish you luck.

[SueJohnson]

I am so sorry for your other problems and looking at your other posts I can sympathize with your spinal stenosis which I have recently been diagnosed as having.

I get the impression your RLS is not under control. You are probably augmenting on ropinirole. The signs of augmentation 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. This means you need to come 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 uptodate on the current treatment recommendations.

First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.

To come off ropinirole , reduce by .25 mg 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 to increase your oxycodone hydrochloride 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). Start it 3 weeks before you are off ropinirole 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 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(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.

[Joolsg]

Welcome Slim1953.This forum is run by RLS-UK. Here's a link to the website where all the up to date information on treatment is set out.

rls-uk.org/medical-treatments

As you can see from the Welcome page, visitors are warned about Ropinirole.

rls-uk.org/

Ropinirole, Pramipexole and Neupro patch are no longer prescribed by experts as they all lead to drug-induced worsening. The drugs make RLS symptoms much more severe.

So do read the website, especially the augmentation page and the list of medications to avoid.

I was on 4mg Ropinirole for 10 years. When my RLS became worse, my GP wanted to increase the dose. I asked about augmentation and the GP said 'what's that?'.

I quickly realised she knew absolutely nothing about the disease. I joined this forum and the knowledgeable members advised me how to get off Ropinirole.

So, read and learn all you can. Your GP will know very little, other than a list of drugs in the BNF which can be prescribed.

There is a withdrawal schedule on RLS-UK website under 'useful resources'. There's also an iron therapy page.

Most RLS patients need higher brain iron levels than the general population and we need serum ferritin to be above 200ųg/L ideally.

Ask your GP for full iron panel blood tests, check whether any of your other medications are listed under 'medications to Avoid'.

And then start to get off Ropinirole using the withdrawal schedule.

There are better medications out there.

[slim1953 in reply to Joolsg]

Hi. We have tried them all. For some reason they do not work on me. I wish somthing would. I am sick of this condition. Cannot sit for long or sleep. I am just glad that at my age it will be over soon.