MEDICATED PATCHES FOR RLS AND PLMS

[radzome]

I started with RLS as a child. At school i was always told to stop fidgeting , or sit still. When I was pregnant the RLS got much worse, and continued, th is when i sought help from my GP. I was given ropinerolr, and then mirapexin, which didn't have any effect.

as the years passed i eventually startted to suffer additionally with Periodic Limb Movement, this caused me a lot of distress. Eventually it got so bad, I could not sit through a concert or film. Then wearing tights made it much worse, wearing fluffy slippers were a no,no, and even wearing gloves agrevated the RLS and plms. Then I heard that the rotigotine patches had been tried, and had proved helpful, they werent prescribed here in the uk initially, but they were eventually, several years ago, and i was prescribed them. I have now used them over a period of several years . Some prescibed medications had an adverse reaction and caused the RLS to return, but it stopped once i was given the patches. The patches have worked for me, and still do,but my GP has monitored the effect closely. It may not be the answer for everyone, but it not only stopped the distress RLS and associated PLMS caused , it has improved the quality of my life. As I mentioned earlier RLS started for me when i was about 6 years old, I am now 84years old, and have been free of RLS and associated PLMS for several years.

It may not be the answer for everyone, and it isn't effective with some prescription medications,

[SueJohnson]

Ropinirole, Neupro (rotigotine) and pramipexole (Mirapex) are no longer the first-line treatment for RLS, since everyone will eventually suffer augmentation, 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.

You said 2 months ago you were on 6 mg. The maximum is 3 mg. You are suffering from augmentation. 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. since you just mentioned you are now on oxycodone and shortec and if you don't take them your RLS returns You were on 4 mg originally.

By the way doing a reply on on a post that is more than 3 days won't be seen by anybody but who you reply to.

You need to get off the patches because it will only get worse. You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch (get a prescription for it) cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. 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.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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 in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and 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.

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.

[MrCrow in reply to SueJohnson]

I wonder if gabapentinoids are completely free of augmentation because a few papers that I have read about them mentioned that they have significantly lower but not non existent rates of augmentation. I wonder why they cause augmentation even when they dont interfere with the dopamine system. Or do they?

[SueJohnson in reply to MrCrow]

Ir is very very rare.

[amrob123 in reply to MrCrow]

My recollection is that that research to which you refer, was conducted in the early days of gabapentinoid use for RLS, and that what was actually being observed was medication tolerance, and not augmentation. In the intervening years there has been nothing to suggest that gabapentinoids cause augmentation. Simply put, the early research was likely wrong.

[Nikos64]

Your comment brought back a memory from childhood. I cannot tell you how much trouble I got into in school for fidgeting and being unable to sit when I was a child. To deal with me, teachers would make me stand facing a corner for the remainder of class. Quite humiliating, but it at least relieved the restlessness. This started when I was in first or second grade.

I’m sixty now and praise the Lord this is under control!