Drs need to stop prescribing dopamine drugs to people with RLS

[Kiram]

reading so much about Dr’s still prescribing dopamine agonists really makes me mad , I think the solution to this is ….. every Dr who prescribes these awful drugs should be tied down so they can’t move , while they get their feet tickled all night !!!! See how well they cope …. Just my thoughts 🤣🤣🤣🤣

[Madlegs1]

I hear you! 👍💚

[Joolsg]

👏👏👏👏I absolutely agree.

RLS-UK is campaigning to get dopamine agonists relegated to last position.

I'm sick of GPs knowing zero about RLS or dopamine agonists.

That's why I encourage anyone affected by ICD to sue their doctors. I know compensation comes out of our taxes, but money talks.

There are now hundreds of successful legal cases against UK doctors. They'll soon join the dots.

[SueJohnson]

My laugh of the day "get their feet tickled all night"😀

[Kakally]

The best suggestion ever made…..🤣

[Restylegs]

Works for me been on sifrol a few yrs now , we all react differently to it i suppose, my dr has been trying me on all sorts of stuff sometimes I feel like a guinea pig and sifrol and exercise are the only thing that does it😀

[Greenleaf360 in reply to Restylegs]

Max dose for sifrol is 0.5mg. Sifrol has a powerful and counterintuitive flaw called augmentation. A tiny dose will give excellent relief from RLS. After a time rls symptoms get worse. Doctor increases the dose. Repeat. Repest. The rls is not getting worse. The ropi is aggravating the rls.

[Restylegs in reply to Greenleaf360]

Yes I had augmentation about 4mths ago and it wasn't nice , my cure but not for everyone was to taper my dose and then came off for a couple of days it was quite bad I was cycling round my cycle path at 2am to burn my legs out for relief. Then started back on again, bingo that reset everything for a couple of yrs I hope now I sleep like a baby , I definitely find any leg exercises that give my legs a burn work wonders

[SueJohnson in reply to Restylegs]

It doesn't have to be bad and there are better alternatives where you don't have to worry about augmentation. You will suffer augmentation again and if will be fairly soon. No way are you set for another couple of years. Sorry. You are best off to come off it now while you aren't augmenting.

First off check if you are on the slow release pramipexole (sifrol). The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole, reduce by half of a .088 [.125] tablet) 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 so you would be wise to get that set up now before you need it. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. Again if that is your plan, get them now.

Also as you get near the end and you find that is too much to reduce, you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (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 the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After you are off pramipexole for several weeks 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? That is the first thing a doctor should have done. 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 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. 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 atHttps://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.

And if you give the city, I might be able to recommend a doctor knowledgeable about RLS.

[Restylegs in reply to SueJohnson]

I've been on everything inc anti smoking bupropion, i think if the dr hasn't got rls then they have no clue, like my dr lol and I lot of people go to Dr Google inc myself in the beginning, but what works for me might not work for everyone. If I get a couple of yrs then I'm happy with that until something else better comes a long that is👍

[Kiram in reply to Restylegs]

I tried this method not so long ago I had a few years break from pramapexole, and my hope was that u could get another few years relief before I augmented again , but argumentation wasn’t too long , but fortunately for me I hadn’t been on the pramipexole too long , withdrawal was slightly easier , although I’m sure it’s the cause of my anxiety and low mood , which is still a struggle on days for me x

[Kiram in reply to Restylegs]

I’m glad it’s working, and I do hope it continues to carry on working for many years yet

[Restylegs in reply to Kiram]

Definitely exercise on my legs has been a miracle for me I wouldn't believe that mixing the 2 would have any effect its actual become addictive 👍

[rmbroadh]

Some of us have no other choice due to other comobidites. Gabapentines, opiods are not viable options.

Keeping the dosage as low as possible is all one can do.

I find it difficult to read all the horrible things I have to look forward to if it even happens in my life time.

Even Mayo says it may be given if there is no other choice, closely monitored.

[Kiram in reply to rmbroadh]

I’m glad it works for you , and hope it continues to do so , my GP prescribed as first defence instead of trying other things , augmentation has made my RLS so much worse , and withdrawal was. Just awful, i really do hope you don’t experience this x

[rmbroadh]

What mg were you on and for how long before you started having issues? I'm taking .9 mg a night. Been about a year.

[Restylegs in reply to rmbroadh]

Started .125 then .25 , then .5 then mix with pregabalin which I have had before but didn't work , now I'm on .25mg sifrol and my bike 5days a week and I sleep like a baby sofar no doubt it won't last forever

[rmbroadh in reply to Restylegs]

Really appreciate your info. Thanks!

[Kiram]

I was only ever on low dose or pramipexole .88mg , I was taking them for 9 years , I can’t pin point when the RLS got worse or when the shopping started ,it was a gradual thing , when I did realise the RLS was starting earlier in day and much more intense I spoke to GP and he wanted to increase the meds , I did but I couldn’t walk up stairs at night , that’s when I started my research and realised I was augmenting , I had to withdraw on my own has GP didn’t see there was an issue , and Iv had sever Gp’s who has tried encouraging me to take them again since , even tho I have told them I was shopping online more than usual

[Oregonmike]

that’s about as close as one could get to RLS.

[Kiram in reply to Oregonmike]

This is how I explain RLS to people