Carbidopa/Levodopa??

[Duke1318]

I have always taken Carbidopa/Levodopa for my RLS. I have always been told it is usually given to Parkinson’s patients but I don’t have Parkinson’s. Anyone else take it?

[Joolsg]

Levodopa hasn't been prescribed in the USA or UK for RLS for decades because of the VERY high risk of drug induced worsening.It's still first line treatment in Germany, but the German RLS group are trying to change that.

It can be prescribed for occasional, one off use. For example if someone with occasional RLS is going on a long flight.

If you're on it nightly, your RLS will be likely be getting worse, starting earlier in the day and moving to your arms or hands.

What dose are you taking, where do you live?

Did your doctor warn you about augmentation?

Please look at the RLSUK website.

rls-uk.org/augmentation-reb...

[Duke1318 in reply to Joolsg]

I am in the US. My original doctor recommended Carbidopa/Levodopa many years ago (over 20). Augmentation was never discussed. He tried a different med about 10 yrs ago but it made me very nauseous and messed with my equilibrium. Switched back to Carbidopa/Levodopa and when it seemed ineffective he increased how many I take at night. I take (3 ) 25/100mg each night.

I now am getting symptoms earlier in day. Current Dr suggested Magnesium and is checking iron levels.

[Joolsg in reply to Duke1318]

You are suffering Drug induced worsening and you need to find a new doctor asap. Your doctor has increased your dose instead of advising you to get off it slowly. Quite frankly, I'm appalled. Augmentation has been known about for decades and your doctor has acted negligently. Did he take full panel iron blood tests? Did he advise you about the high risk of drug induced worsening and Impulse control Disorder.

Join rls.org, the US foundation for RLS. They have centres of excellence for RLS and support groups in the USA.

He should be following the Mayo Clinic Algorithm, written by the top RLS experts.

You need to see a knowledgeable doctor. Show the current doctor the Mayo Clinic algorithm.

You will not stop your severe RLS until you get off levodopa. Reduce very slowly, over 4 to 6 months and ensure your doctor helps by prescribing low dose opioids to help you settle the severe withdrawal symptoms.

Dr Berkowski operates out of Ohio and Florida and would prescribe appropriate meds to help you through withdrawal and control your RLS. He would also prescribe an iron infusion if your serum ferritin is below 200.

The med that was prescribed 10 years ago was probably pregabalin or gabapentin which cause dizziness. Most side effects do settle after 2 months. Pregabalin and gabapentin are now first line meds to treat RLS and work well for most people once through withdrawal from dopaminergic meds.

[Duke1318 in reply to Joolsg]

Thank you so much for your advice! My first Dr who prescribed it has retired but I suspect it was a forced retirement. My current Dr just never changed since I thought it was working. I will definitely reach out and see about changes. Thank you again!!

[SR223 in reply to Joolsg]

What if you have Parkinson’s disease and RLS, like my mum?.and have to take Levodopa /Cardopa in the form of Madopar and Siminet to combat the Parkinson’s as well as Gabapentin for RLS [300 mg] nocte.

Unfortunately their are limited to no options to stopping Levodopa/Cardopa for Parkinson’s.

Comments welcome from those in the same position.

Thanks

[SueJohnson in reply to SR223]

Patients with both RLS and Parkinson's do not typically get augmentation on daily levodopa. Rasagiline (Azilect) is used for Parkinson's and helps RLS.

[SR223 in reply to SueJohnson]

Hello Sue, thanks for the reply.

Is Rasagiline available on prescription in the UK ?

[SueJohnson in reply to SR223]

Yes

[SR223 in reply to SueJohnson]

Thanks👍

[Joolsg in reply to SR223]

I was talking about RLS. If you have PD AND RLS, there are alternatives to levodopa. The team at Bart's London do not prescribe dopaminergic drugs for PD. They say the prevalence of ICD and side effects are too high.It may be worth asking for a referral to Bart's. They seem to be very forward thinking in MS and PD.

[SR223 in reply to Joolsg]

Thanks joolsg for the quick reply.

good to know that some experts in the medical field are looking at alternatives rather than the old favourites prescribed on rote.

👍

[SueJohnson in reply to Duke1318]

What city and state do you live in. I may be able to give you the name of a doctor that knows a lot more about RLS than your doctor does.

[Duke1318 in reply to SueJohnson]

I live in a small town in TN, just above the AL border. But I can easily go to Nashville or Huntsville, AL.

[SueJohnson in reply to Duke1318]

You are in luck. A quality care Center which is among the best in the world is at Vanderbilt. Dr. Arthur S. Walters [phone] is one of them. But if you can't get an appointment with him any of them are excellent.

[Duke1318 in reply to SueJohnson]

Sue, Your the best!!! Thank you, I’ll see if I can get in!

[SueJohnson in reply to Duke1318]

Since your post I did more investigating and discovered that the capsules can be opened up and sprinkled on applesauce which tells me that for the tablets you can use the jewelry scale so if your appointment is aways off and you want to start reducing, you can.

[Opie__ in reply to Duke1318]

I live in AL and started going to Vanderbilt for RLS a year or so ago. I came off DA meds and now take Gabapentin. My neurologist works well with my primary care physician with blood work. Some of the neurologists see patients in Franklin TN, which is closer for me than Nashville. Good luck

[Duke1318 in reply to Opie__]

Can you tell me who your Neurologist is? I have to get a referral to see Dr in Nashville.

[Opie__ in reply to Duke1318]

I initially saw Kaung Htet San at Vanderbilt. Once my RLS were solved, I now see his NP Nicole A Poirier, APRN. They are both very good and easy to talk to. I mostly see Nicole about my sleep apnea now.

[McClintok in reply to SueJohnson]

Do you know any good doctors in Las Vegas?

[SueJohnson in reply to McClintok]

I'm afraid not.

[SueJohnson]

Joolsg is 100% correct. You are suffering from augmentation and need to come off it. Unfortunately that is going to be hard to do as one tablet is equivalent to roughly 5 mg of ropinirole and to come off that you reduce by .25 mg every 2 weeks. I know they can be cut in half especially if they are scored, but I don't know if the two medicines are distributed evenly throughout the tablet. Ask your pharmacist that. If so you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US). Measure the tablet and and shave off a bit of the tablet and measure it so you are reducing by about 1/20 of the tablet every 2 weeks. You may be able to reduce by more. Judge that by how much your symptoms increase each time you reduce. 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.

Reply here and let us know what the pharmacist says and how much you are able to reduce so we will know for the next person.

Gabapentin or pregabalin are the first line medicines for RLS (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off Carbidopa / Levodopa 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? 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. Be sure that is what you ask for ask just checking your iron might not check your ferritin. 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.

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]

The more I think about it, I would start by reducing a by a higher amount and if you find your symptoms don't settle within 2 weeks than wait longer until they do and reduce by a lower amount next time, or go back up for a day or 2 and start over by reducing by a smaller amount.