Medication

[Keith1231]

Has anyone heard of Carbidopa and Levidopa and what type of drug are they, this is what my GP has suggested I try. Any advice would be appriciated. Keith

[Gmc54]

these drugs are dopamine agonists. As such best avoided.

[Joolsg]

Please, please, please refuse.Levodopa hasn't been prescribed for RLS for over a decade. It has the highest rate of drug induced worsening. It's a dopaminergic drug. AVOID.

This is VERY concerning.

Ask your GP to read RLS-UK website to learn about the disease and treatments.

[Keith1231 in reply to Joolsg]

I suspected this, they are very ignorant. I will speak to my GP on thursday. Thank you.

[Covenant1962 in reply to Joolsg]

Hi Jools, this has got me concerned. I have severe RLS for which I take Oxycodone. Recently I was diagnosed with Parkinson's and prescribed Levodopa to keep it under control. I have raised the DA and augmentation issue with my Consultant and nurse practitioner who played it down either saying that they had not come across this or it was low risk. I plan to raise this more forcefully at our next meeting and talk to my GP. Any advice on how I should proceed from here? Should I stop taking the Levodopa?

[Joolsg in reply to Covenant1962]

Oh dear. I hear over and over on this forum about 'low risk' of augmentation from UK doctors and neurologists.Are you a member of a PD help group? Many PD patients also have RLS. It may be useful to post there and ask how they avoid drug-induced worsening of their RLS.

If you have RLS and Parkinson's , levodopa will increase the severity of RLS symptoms.

I spoke to Professor Alistair Noyce, a top neurologist at Bart's Hospital, via zoom a few months ago to discuss trials of Buprenorphine. He's a nice guy.

He told me his speciality is PD but he no longer uses dopaminergic drugs to treat Parkinson's.

I suggest you discuss other treatments as levodopa WILL cause drug-induced worsening of your RLS.

Older studies showed high rates of Augmentation. This 2023 study shows 73% developed Augmentation. Show it to your team.

frontiersin.org/journals/ne...

Some non dopaminergic treatments are mentioned here. But perhaps ask for referral/second opinion from Bart's.

link.springer.com/article/1....

It's a difficult situation and you need to have a full, detailed discussion.

[SueJohnson in reply to Covenant1962]

Ask for Rasagiline (Azilect) instead of levodopa.

[Joolsg]

And Keith, tell your consultant what the GP suggested. They will be as shocked as the members of this forum.If Buprenorphine caused shortness of breath, another opioid may not.

Codeine 60mg or Oxycontin 5 or 10mg every 6 hours may be helpful.

I really hope that the consultant at Cambridge will help

Be very wary if he suggests the Neupro/Rotigitone Patch. That is another dopamine agonist and WILL quickly cause drug-induced worsening, like Pramipexole. UK neurologists are about a decade behind the top US specialists on this. There's a useful video by Dr Berkowski explaining why Neupro/Rotigitone is BAD.

Show it to the neurologist if he tries to prescribe Neupro. You don't want to suffer augmentation and withdrawal again.

youtu.be/Tz7g9sxS0_I?si=-2f...(Not working as expected?)

[Keith1231 in reply to Joolsg]

Thank you. As I have been subjected to augmentation do you think my symtoms are to do with nerve damage as they are different to arms and legs flying about mostly at night. Its now like a pressure, cold senation in my lower leg but normal to touch and 24/7. Where as before it was mostly at night?

[Joolsg in reply to Keith1231]

The cold, pressure sensation does not sound like RLS or damage caused by dopamine agonists. Look at diagnosis on the RLS-UK website. The strong URGE to move is the key criteria. So if the pressure/cold causes you to move and movement relieves the sensation, then it could possibly be RLS. Particularly as you are currently not taking any meds.

It sounds more like peripheral neuropathy, but your neurologist can confirm that.

[Madlegs1 in reply to Keith1231]

That sounds very much like a nerve issue.I would certainly take it up with a knowledgeable medical person.

[Sinor]

They are Parkinson drugs. My mum was on Levidopa, Ropinirol and Clonazopam for RLS. She had the worst RLS doctors had ever seen. She couldn't control her leg jumping and it was so painful. Slowly the drugs lost their effectiveness. She was miserable and always concerned the day would come when there were no drugs left to try. The Parkinson drugs also disrupt red cell production and can cause low iron which in turn worsens RLS. I'm now starting to have issues with RLS over the last 12 months and I don't want to go down the path that she did. I'm trying NAC at the moment and liver capsuals for lowish iron. I have a history of hypothyroidism and discovered there's a connection.

[Joolsg in reply to Sinor]

Did your mother have Parkinson's?What you are describing is drug-induced worsening of RLS( augmentation) caused by dopaminergic medications. EVERY person with augmentation has the worst RLS doctors have ever seen. Mainly because they aren't taught RLS or that dopaminergic drugs drive the disease and make it 1000% worse.

My legs jerked violently non stop during augmentation.

But now, with the right treatment, guess what? Zero RLS.

Most doctors are completely ignorant and don't know anything about RLS.

As Dr Buchfuhrer, a top RLS expert, says - 95-98% patients can be symptom free with the RIGHT doctor using the right tools.

I'm so sorry your mother had to go through that.

[Sinor in reply to Joolsg]

No, Mum was prescribed the parkinson drugs for RLS. She passed away in Oct at 92 but has had RLS since she was in her 60s. She was originally started on Ropinirole and when that no longer gave relief she was sent to a neurologist who started her on parkinson meds. When that had limited effect we discovered that Palexia, a narcotic, helped quite well. She was on it for pain with a venous ulcer on her leg. If all else failed she began to resort to Clonazapam at night to get relief so she could sleep. I'm horrified to find out what I have from this group and now understand why her condition worsened on these medications. She suffered greatly and I'm trying hard to learn from it and avoid the same pitfalls now that I'm getting RSL symptoms.

[Joolsg in reply to Sinor]

Oh I'm so sorry. She spent those last years suffering horribly because of medical ignorance.The palexia and clonazepam will have helped, but not very well if she was still on levodopa. The up regulated D1 dopamine receptors will have been screaming out for their dopamine hit, causing the violent all over RLS and jerking.

RLS-UK has been trying, without success,for years to get GPs AND neurologists properly trained in RLS.

Sadly, the UK is at least a decade behind on best treatment.

The top RLS experts are in the USA where they released the Mayo Clinic Algorithm in 2021 relegating all dopaminergic drugs and the new AASM guidance in September 2024 went further and relegated them to 'end of life scenarios'. That's how bad these drugs are.

Start by joining RLS-UK and read the website fully. It has links to the Mayo Clinic Algorithm and the new AASM guidance and printable pages on how to get off dopamine agonists and how to get iron treatment.

Whatever you do, refuse ALL dopamine agonists - Pramipexole, Ropinirole, Rotigitone or levodopa. Insist on iron therapy first and ask for trigger meds to be replaced.

If raising serum ferritin above 200ųg and avoiding trigger meds doesn't resolve symptoms- you start on gabapentin or pregabalin.

If they don't work after 3 months- you then switch to low dose opioids.

There are very few knowledgeable doctors.

We can recommend around 7 or 8 maximum in the entire UK.

[Sinor in reply to Joolsg]

Thankyou. I wish I had known all this when she was a live. Her legs jerks were so intense as was her suffering. We just didn't understand what was going on.

[SueJohnson in reply to Sinor]

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

First lets be sure you have RLS. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

I will assume you have it and are not taking anything other than what you said.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

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, 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead ask your doctor to prescribe gabapentin or pregabalin. 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).] It will take 3 weeks before it is fully effective. 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 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). 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 up-to-date on it 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, 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, low potassium. 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 other than NAC and liver pills I may be able to provide a safe alternative.

Since you have hypothyroidism, Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods).

[Sinor in reply to SueJohnson]

Yes I have all those RLS symptoms. Sometimes I get like a whole body restlessness where I just can't stay still in bed and have to get up and walk. It's very distressing. It usually then progresses to arms or legs. I have blood test to have done after Christmas as my functional GP is away at present. She is checking my general thyroid function that she usually does as well as iron studies, copper, LFTs and FBC. I have been on Pregabalin before and really don't want to go there again due to side effects. I have trouble voiding when on it and from what I understand interferes with calcium absorption. I have had issues with osteoporosis recently. It was diagnosed after a bad fractured ankle 12 months ago. After watching Mum go through what she did with drug side effects I want to try a more natural approach. This is why I'm trying NAC and liver capsules. My last blood test showed my iron was still within normal range but lower than it had been. That was over 6 months ago so have decided now I'm getting worse RLS to supplement iron. Mums legs improved considerably after an iron infusion. I also find moderate exercise through the day helps. I walk dogs and do pilates. If I sit around it seems to be really bad at night. So as you can see I'm looking for patterns that may help improve things but sometimes nothing helps and I get so sleep deprived I can barely function.

[SueJohnson in reply to Sinor]

Do ask for the full iron panel and follow my directions for it so you get your ferritin number as that is the most important for RLS and don't let your doctor say it is normal because what is normal for others is not normal for those of us with RLS.

If you are taking beef liver capsules and you need more iron, you probably aren't getting enough. For example 3 tablets of Solgar desiccated beef liver has only 2 mg of elemental iron and if your ferritin is below 100 you need at least 65 mg. If it is below 50 you need even more. Also too much heme iron which is what it is can increase cancer rates and heart disease.

Instead: If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.

Take it every other day as more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. Since you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

I'm sorry about your experience with pregabalin. If your symptoms get worse you might want to consider gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. If you do post back here as it is taken differently.

By the way neither pregabalin nor gabapentin interfere with calcium absorption although they do need to be taken 2 hours apart.

And if your symptoms get worse there are other medicines you can try, so if that happens post back here and we can advise you.

[Sinor in reply to SueJohnson]

Thankyou I really appreciate this. I'm in Australia. What would my ideal feritin level be? I know pathology can read differently in different countries.

[SueJohnson in reply to Sinor]

It should be the same in Australia. You want it to be at least 100 and some say 200 or 300.

[Sinor in reply to SueJohnson]

Thanks. I've taken a screen shot so I can check this against my pathology I'm have after Christmas.

[amrob123 in reply to Sinor]

You're thinking of the reference range which differs from country to country. In the context of RLS, the reference range doesn't apply, it's just a threshold which I understand is serum ferritin above 75ug/L.

[Sinor in reply to amrob123]

Ok thanks. Good to know

[amrob123 in reply to Sinor]

Also, there are some knowledgeable specialists here in Australia. If you ever need a recommendation, let me know what state you're in (direct message me if you prefer). There's also an RLS Australia and NZ facebook group.

[Sinor in reply to amrob123]

I'm in NSW about 2 hrs north of Sydney....in Newcastle

[JustVisiting23]

I augmented terribly on Carbidopa. I understand that it has one of the highest rates of augmentation as well.

[BettyRae]

Both drugs have a high chance of augmentation!

[Midnight-Blue]

Hi Keith, not knowing your diagnosis, I have MS & have spastic legs (& RLS) & take Carbidopa-Levi ER 25-10 in the morning. My neurologist prescribed it for me. I had researched the medication prior taking it (I do this with all medication. You have to be your own advocate.) I hope this relieves your anxiety a bit. Also, any time you have questions about your medications or anything your physicians tell you, ask them to explain further. They are your first line of defense.

[SueJohnson in reply to Midnight-Blue]

You said at one time when you were on ropinirole that you didn't care about augmentation. That's a good thing since people on carbidopa/levodopa augment more quickly than on DAs.