RESTLESS LEGS SYN

[2024legs]

hello everyone I first experienced RLS 40 years ago most GPs had no idea and prescribed sedatives which were totally wrong for this condition I have managed it through other things ie walking on cold floor massage and been successful 5O % of the time until recently and the symptoms have worsened …a GP has prescribed Pramipexole.125mcg before bed. Does anyone know of this and have any advice ? I don’t like drugs but I’m getting to the stage I need help

[ChrisColumbus]

Pramipexole is a dopamine agonist (DA) - as are ropinirole and rotigotine - which used to be first line treatment for RLS. DAs are no longer prescribed by RLS experts because while they help at first for the majority they eventually lead to a worsening of the condition (a process called augmentation) as well as other issues such as impulse control disorder. Unfortunately most GPs know little to nothing about RLS - they are not taught about it - and therefore just follow out-of-date guidelines.

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

[2024legs in reply to ChrisColumbus]

Oh thank you for your reply I will ask Dr to do blood studies mind some Drs go might like to be told or suggested which is a difficulty in itself …

[ChrisColumbus in reply to 2024legs]

Indeed - some doctors are very resistant to advice from patients or indeed from experts! Are you in the UK or elsewhere? You haven't completed your profile:

healthunlocked.com/rlsuk/po...

[2024legs in reply to ChrisColumbus]

Sorry I will have to complete my profile I am in Australia

[ChrisColumbus in reply to 2024legs]

It will be interesting to hear whether Oz doctors are more willing to listen/learn than some UK doctors!

BTW, the RLS 'bible' is the Mayo Algorithm compiled by a panel of experts:

mayoclinicproceedings.org/a...

[ChrisColumbus]

Before starting ANY drug treatment for RLS you should have a fasting full panel iron blood test, to include serum ferritin and transferrin saturation (TSAT), as iron is a major factor in RLS.

This means having it done in the morning after fasting overnight, do not have a big meal the night before, and do not take any iron supplements or multivitamins containing iron for at least 48 hours before. If the test is not done in this way the results can be distorted.

The 'normal' range for serum ferritin is very wide, but experience has shown that levels over 100 - preferably nearer 200 or more - help many RLS sufferers. Most doctors are unaware of this so don't let them just tell you that your results are 'normal': get all the actual numbers and post back here for further advice.

[ChrisColumbus]

Many other prescription and OTC meds can trigger or exacerbate RLS. The following list is extracted from the RLS UK website referenced before:

"A number of medications can make RLS worse. In particular, anti-nausea drugs and sedating antihistamines can block the brain’s dopamine receptors, increasing the symptoms of restless legs. Antidepressants that increase serotonin and antipsychotic medications can also aggravate the condition. Let your doctor know if your restless legs symptoms worsen after you take a new medication. A change in dosage or a change to a different medication may help. Below we have listed a number of medications which our forum users suggested made their RLS worse. Please note that this list is not exhaustive and while we have been advised that they have made RLS symptoms worse for some people, this may not be the case for you.

In particular, anti nausea drugs and sedating anti histamines can block the brains' dopamine receptors, increasing the symptoms of restless legs. Anything containing pseudoephrine or phenylephrine should be avoided.

Cold and Flu remedies and Anti-Histamines: Common culprits include: Night Nurse, Day Nurse, Nytol, Actifed, Avamys, Benadryl (Acrivastine), Chlorphenamine ( Piriton), Contac, Coricidin, Fluticasone, Rhinolast (Azelastine hydrochloride), Sinutab, Sudafed. Note that many cough syrups may contain antihistamines, especially if they are recommended for cold or flu symptoms. Always try to choose non-drowsy options.

Anti-depressants: Many people living with RLS also live with depression and consequently are prescribed anti-depression medication. RLS is also common in two conditions that often co-occur with depression: ADHD and PTSD. However some anti-depressants can actually make RLS symptoms worse. If you are prescribed anti-depressants and live with RLS, we recommend you monitor your RLS symptoms to see if your symptoms worsen after starting anti-depressant medication. If so, speak to your medical practitioner to see if you can be prescribed an alternative medication. Trazodone and Bupropion are both RLS safe alternatives.

Anti-psychotics: Most anti psychotics worsen RLS.

Selective Serotonin-Reuptake Inhibitors (SSRIs) and Serotonin and Norepineephrine Reuptake Inhibitors (SNRIs):

Citalopram (Cipramil), Duloxetine (Cymbalta), Venlafexine (Efexor), Escitalopram (Cipralex), Paroxetine (Paxil, Seroxat), Fluoxetine (Prozac), Nefazodone (Serzone, Dutonin, Nefadar), Sertraline ( Zoloft, Lustral), Dapoxetine (Priligy), Fluvoxamine (Faverin), Vortioxetine (Brintellix).

Tricyclic medications: Amitriptyline (Tryptizol), Clomipramine (Anafranil, Imipramine (Tofranil), Lofepramine (Gamanil), Nortryptiline (Allegron), Amoxapine, Desipramine (Norpramin), Doxepin, Trimipramine, Imipramine, Mirtazapine ( Zispin), Protriptyline, as well as others, have been suggested as making the symptoms of RLS worse.

Antacids: Most Proton Pump Inhibitors worsen RLS. Omeprazole, Lansoprazole, Pantoprazole, Rabeprazole, Esomeprazole.

Anti Nauseates: Discuss any anti nauseates with your doctors before surgery as many, including prochlorperazine or metoclopramide) will trigger RLS during and after surgery. Safe alternatives include Odansetron ( Zofran), domperidone or granisetron hydrochloride."

[Ga_Oliver in reply to ChrisColumbus]

Hi Chris, thanks for your input and reference to the above drugs. I've has RLS for some 6-7 and been on a few different anti depressants in that time. I haven't noticed any obvious difference in relation to which ant-depressant has had any effect on the symptoms in that time (ie RLS neither worsened or improved). I noticed duloxatine was included in your list but couldn't quite work out if they are one of the ones that could potentially worsen systems? Thanks, Gareth

[ChrisColumbus in reply to Ga_Oliver]

Hi Gareth

The list I've quoted is from RLS-UK, the UK's restless legs support charity - rls-uk.org/ - the equivalent of EARLS in Europe - earls.eu/ - and the RLS Foundation in the US - rls.org/

All the antidepressants in the RLS-UK list are known to trigger or exacerbate RLS in *some* (although not all), *except* trazodone and bupropion (Zyban, Wellbutrin). Having said that, some have problems even with these.

However, as you can see from the list, there are so many other things that can also make RLS worse it can often be difficult to determine the cause.

I can't see which country you're in or anything about your history with RLS: please read this pinned post:

healthunlocked.com/rlsuk/po...

[Rayme]

hi, this forum is great, I read the posts almost every night. It is helpful to read what others have to say. I've had RL all my life, much worse now in my 60s. Last year tried Pregabalin, then Codeine: didn't work. Doctor prescribed .125 Premipexole. I would not take it after hearing about augmentation. But one night I did, just once! Of course it worked. Now I've asked for Methadone and it works well. It's only day 4, so far so good. I will take it for up to 3 months, then take cannabis for a few months. I wish you the best for a solution to these awful fidgets. The advise from Chris and others who regularly reply is so valuable!

[Legtorture in reply to Rayme]

I have had restless leg syndrome since I was in my 20s. It was an occasional thing. But since i turned 62 or so, i have had the problem daily.

I visited a specialist, who reduced the amount of neupro that i take, from 6 mg to 3 mg abd had me start raking 300 mg ov lyrica every night before bed.

Also, i have begun taking iron supplements.

I was, before the change, unable to sleep. Upon laying down, after a few monents, the symptoms would appear.

With the change in me, i have had only one or two episodes!

The doc wanted me to decrease neupro fron 6mg to 2 but the sumptons came back. I tried 2mg, then 3.

I will have labs done here shortke. It will be interesting to see what my iron levels are

[SueJohnson]

I agree with ChrisColumbus. On the meal before you get your full panel blood test, it's a heavy meat meal you want to avoid. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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, carbs, foods high in sodium(salt), foods that cause inflammation, foods high in glutamate, 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 (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, 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 as ChrisColumbus mentioned. 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.

Dopamine agonists (DA) like ropinirole (requip) or pramipexole (mirapex) 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. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 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 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 uptodate on it at Https://mayoclinicproceedings.org/a...

By the way, it would help if you indicated the country you live in on your profile.

[Joolsg]

I agree with SueJohnson and ChrisColumbus.Do NOT take Pramipexole.

It WILL cause drug-induced worsening.

RLS isn't taught at any stage in medical training and UK GPs know zero.

Did the GP warn you explicitly about the very high risk of Impulse ControlDisorder? Or that there is a VERY high rate of drug-induced worsening, called augmentation?

If not, your GP is acting negligently. There have been hundreds of cases against GPs and neurologists for prescribing these drugs and not warning patients of the risks involved.

Mention it to your GP. It may make them do some research.

NICE and NHS guidance state that full panel bloods should be done first and all trigger meds reviewed and replaced.

It would be helpful if you filled out your bio to let us know age, location, sex and the meds you're taking, as many cause/worsen RLS.

Raising serum ferritin above 200 resolves the majority of RLS cases without the need for meds.

[Enable]

I've been on on pramipexole 0.18mg for at least 7 years. It works for me . I am though worried about potential augmentation one day from what I've read on this forum.

[Merny5]

I completely agree with the others. Taking a dopamine agonists such as Pramipexole was the biggest mistake of my life and I have made many. Please DO NOT start pramipexole!

[HipHop1972]

Hello 2024legs, sorry your suffering but I can assure you that it will eventually get worse if you continue with Pramipexole, I was on Ropinirole for years, and like Pramipexole it was a Dopamine Agonist that makes the condition worse and it too me 13 months to come off it. May I sunset you consult the Mayo Clinic and read up about TLS and Augmentation. The recommended medication for RLS is Pregabalin so see if you can get your doctor on side. I wish you well.

HipHop1972