Statins

[SurvivorD]

I have had RLS for close to 20 years and it has progressively got worse. I am on Pexola 1mg at night. I had heart surgery six years ago and am on 5mg of Zuvamor as a precautionary measure. Should I rather take my heart medication in the morning as I am now reading that it can affect the RLS?

[SueJohnson]

Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

[SueJohnson]

On the pexola, which is a dopamine agonist, 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. Up to 70% of people on it will suffer from augmentation and if that happens you will have to come off it. If that happens post back here and we can give you some advice. Dopamine agonists are no longer the first line treatment for RLS, gabapentin or pregabalin are. 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...

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, fast after midnight and have your test in the morning. 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. Improving your ferritin is one of the ways to help avoid or at least put off augmentation.

[SueJohnson]

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, estrogen, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any other than what you mentioned 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.

[SurvivorD in reply to SueJohnson]

Thank you Sue for your prompt reply. Yes after joining your forum I definitely have augmentation from the Pexola. I will make an appointment with my GP and have my iron tested and also discuss me coming off the pexola. I know it will be very difficult as once or twice I have forgotten my medication and it was a pleasant experience!!! I have never had high cholesterol it is genetic heart disease. I have lost four of my family members who were in there late twenties and my dad at 44 years old. I am very strict with my diet but not gone Vegan but at your suggestion it may be a good idea. Last year I had a double mastectomy due to breast cancer and since then I am climbing up the wall with my RLS. I always say it is the most debilitating syndrome that only if you suffer with it will you understand!!! I now have some extra knowledge and a plan to lessen or even cure my RLS.....thanks to you and all the helpful articles.

[SueJohnson in reply to SurvivorD]

That's interesting because the purpose of Zuvamor is to reduce cholesterol.

To come off Pexola, reduce by .125 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 a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Dopamine agonists like Pexola are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US. I don't know about South Africa) The 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. 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 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. If you take magnesium 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) daily."

[SueJohnson in reply to SurvivorD]

Unfortunately RLS can not be cured, only controlled.😩

[Joolsg]

Follow Sue's advice AND consider legal action against the doctors that put you on 1mg Pexola. The max dose in 0.5mg, but experts believe that's too high!

[Eryl]

You might feel like changing your doctor after watching this video. youtu.be/C3rsNCFNAw8(Not working as expected?)

[SurvivorD in reply to Eryl]

Thank you very interesting. Just to clarify. I have for many years had my cholesterol checked and had numerous ECG's and no problem was ever diagnosed. When I turned 60 I decided to go to a cardiologist to have a check up instead of my GP. Once I had the stress ECG they could see there was a problem and did an Angiogram only to discover I had what is commonly known as 'the widow maker" I remained in hospital and had heart surgery. Yes it was very strange that I never had high cholesterol or any other symptoms indicating I had a very serious heart condition. It was put down to genetic heart disease. I have a yearly stress ECG, Scan and blood tests and so far all is in good working order. Thank you for your response always welcome when it comes to ones health

[Eryl in reply to SurvivorD]

If you've never had high cholesterol It baffles me why you should be put on a statin given their harmful side effects.

[SurvivorD in reply to Eryl]

I'm on 5mg as a precaution. Thanks for your concern.

[SurvivorD in reply to Eryl]

I am on 5mg as a precaution. Thank you for your concern