maxima dopa

[JojoWalker]

has anyone tried Macuna Dopa in place of ropinirole for RLS? I bought some at my local health food store, but can’t find any information on how to dose it. I hate taking drugs, and was hoping for a more “natural” solution.

[SueJohnson]

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

It boosts dopamine but can also lead to augmentation. It contains L-dopa. It won't lead to augmentation as quickly as ropinirole, but you still don't want to take it.

Are you taking ropinirole? And if so, how much?

I am going to assume you are and give you my advice. So forgive me and ignore what I am about to say except for the part about ferritin which is a natural way to possibly improve your RLS.

Up to 70% of people will eventually suffer augmentation on ropinirole 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 nor might iron. And one expert believes everyone will eventually suffer 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.

Ropinirole and pramipexole used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

My advice is to get off it before you suffer from augmentation because it will be a lot easier.

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.

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 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.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 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)."

Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. 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 including in a multivitamin 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.

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...

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, C, 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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[JojoWalker in reply to SueJohnson]

Thank you for all of this info. I am a 57 year old female living in the US.

The only meds I take are progesterone, estradiol, ropinirole, and indomethacin. Supplements: magnesium glycinate, fiber, krill oil, D3, E, turmeric, glucosamine condroitin, collagen, Prilosec, and an ionic multiple mineral liquid concentrate (recently added, and it has improved my sleep dramatically)

My ferritin levels are at 140. My doctor asked me to stop iron supplements a while ago because my iron stores were too high.

My RLS journey really began when I was a child. I would have what my mom called “growing pains”. As an adult, I had trouble with “nighttime leg cramps” during my last 2 pregnancies. I know recognize that it was RLS. Mine is definitely triggered by any hormonal changes, and menopause has been terrible in that regard. I have tried to keep track of foods, drinks and meds that trigger my RLS, and have a decent list: red wine, tequila, dark chocolate, benedryl are all on my list. I she found cannibis to be very helpful, but I do take ropinirole 1.75 mg ( not slow release), and have recently noticed that I need to take a small dose early in the evening while sitting and watching tv. I had knee surgery in 2020, and slept great while taking the opioid pain killers, but my doctor will not prescribe them because of the addictive properties. Hot Epsom salt baths before bed has been helpful.

I will start decreasing the ropinirole, and send the Mayo Clinic article to my PCP.

[SueJohnson in reply to JojoWalker]

As you said hormonal changes which increase estrogen like pregnancies can make RLS worse as your estradiol which is estrogen will. Unfortunately there is no safe substitute.

Collagen as I mentioned makes RLS worse for most.

Prilosec, an antacid is a proton pump inhibitor. RLS-UK says most proton pump Inhibitors worsen RLS and several people on the forum have said it made their RLS worse. I would suggest gaviscon advance instead.

[Joolsg]

I did look into it & tried it around 9 years ago when I was augmenting on Ropinirole.It didn't help me at all. It probably made it worse.

But I did get off Ropinirole.

If you have RLS and it was bad enough to require Ropinirole, it's unlikely that you can be med free, unless the main cause of your RLS is low iron and you are one of the 60% who respond very well to iron infusions.

So, follow SueJohnson advice, raise your serum ferritin by IV iron infusion or iron pills.

I do know 3 or 4 people who managed to get off dopamine agonists and get an iron infusion and they're now med free.

[ChrisColumbus]

Mentioned here a few times in posts and replies 5-10 years ago, some enthusiasm but mostly negatively. Follow advice from Sue and Jools.

[RCHD]

it’s highly addictive

[teakabeagle]

Macuna Purens is essentially LevoDopa and you will augment on it. Not the best idea. I have an acquaintance that rotates Macuna, Kratom and THC. It works for him, but I think he’s playing with fire and would not recommend it.