Restless legs

[Mankoom]

Can Pexola 3.5 mg be harmful to my body on the long term?

[ChrisColumbus]

I note that you first posted here 3 years ago so are presumably not new to RLS...

Pramipexole (Mirapex, Sifrol, Pexola etc) is - like ropinirole (Requip) and rotigotine (Neupro) - a dopamine agonist. These used to be first line treatments for RLS but no longer are amongst experts because of problems with augmentation (where you have to keep taking more, yet symptoms can start earlier in the day and spread to other parts of the body) and impulse control disorders (behavioural conditions that make it difficult to control your actions or reactions - this can lead to compulsive eating, gambling, spending etc.) These problems can take weeks, months or years to manifest, but most if not all eventually suffer these problems.

Are you already taking Pexola, or is your doctor about to prescribe it for RLS? In the first case, you'll need guidance here on how to withdraw (very slowly!) and what to take instead. In the second case, you don't want to start on it: again you'll get guidance here on alternative treatments.

Few doctors know much if anything about RLS, so look for guidance from experienced and knowledgeable people here like Joolsg SueJohnson Madlegs1 and LotteM

[SueJohnson]

As Chris says it is a dopamine agonist (DA). Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment discusses augmentation 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. Https://mayoclinicproceedings.org/a...

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 that has iron in it 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.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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.

[SueJohnson]

I just noticed you said 3.5 mg pexola. The maximum dose for RLS is .5 mg which means you are taking seven times the maximum dose. Obviously then you are not just starting it and it also means 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. This means you need to come off it.

First off check if you are on the slow release Pexola. The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off Pexola 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.

Dopamine agonists like ropinirole and Pexola are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) Since you are over 65 if you are susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off Pexola 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 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, 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

[ChrisColumbus]

I see that Sue has picked up on the amount of Pexola: 3.5mg may be an appropriate dose for Parkinson's but not for RLS.

That made me look back to your Profile where I see you also mention depression: are you taking antidepressants, because most make RLS worse for many. Only a couple - bupropion (Wellbutrin) and trazodone - are generally considered safe for RLS. Various other medications also make RLS worse for many: if you list anything else you are taking - on prescription or over-the-counter - we can offer advice.

[Joolsg]

Yes. It can cause severe increase in the symptoms of RLS and experts believe it can cause permanent damage to your dopamine receptors, which can lead to depression and also prevent other treatments working.As SueJohnson and Chris advise, 3.5mg of pexola is criminally high for RLS.

Follow SueJohnson advice.

You need to get off it, very slowly.

It will take at least a year to get off such a high dose.

[SueJohnson in reply to Joolsg]

Why was your recent post about gabapentin deleted? Did you do it or Katrina?

[Joolsg in reply to SueJohnson]

I deleted it after reading the references. It seemed to indicate that new International RLS taskforce guidelines had been issued, but when I read the footnotes, the article was referring to the Mayo algorithm and research articles by the usual experts. I attach it so you can read. I couldn't find a reference to a new International RLS task force or group, so deleted it.tandfonline.com/doi/citedby...