Suffering with restless leg syndrome

[Restlesscub]

I’ve had restless leg syndrome since I was a teenager and I’ve been suffering since 2011 and tried all sorts of diets / supplements and medications for relief. I’m currently taking 3x 500mg of ropinirole tablets at night. I’ve been taking this for around 3/4 years now and they don’t seem to be working no more. I’ve tried various other medications from the doctors and they don’t seem to work and I always resort back to the ropinirole as a last ditch hope. Is there any help I can get as it’s getting very bad recently and the doctors just don’t seem interested to help and just give me other tablets to try and no actual help 😩

[SueJohnson]

What medicine is it that you are taking 3 times 500 mg.?

[Restlesscub in reply to SueJohnson]

sorry I missed that bit out Sue. I’m currently taking ropinirole

[SueJohnson in reply to Restlesscub]

I assume you meant 3 times 5 mg of ropinirole. That is almost 4 times the maximum amount and you are augmenting and need to come off it. 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 is no longer the first-line treatment for RLS, gabapentin or pregabalin is. Up to 70% of patients will suffer from augmentation which believe me you don't want. It 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. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and 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. 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. 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. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin (75 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. 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 divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 of pregabalin) daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.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...

[Restlesscub in reply to SueJohnson]

Thankyou sue that was very helpful. I’ll get in contact with my doctors and see if they can help with the information you’ve gave me

[Joolsg]

I hope that's an error. Do you mean 3 x 0.5mg? Do not increase the dose. As it's no longer working, it's best to get off now slowly by 0.25mg every 2 weeks and concentrate on raising your serum.ferritin. Raising brain iron by increasing serum ferritin resolves the majority of RLS. Doctors will say your levels are fine but some with RLS need levels above 300.

Read the pinned post on augmentation. What other meds are you taking including OTC meds?

Did your GP warn about augmentation? It extremely common, probably far higher than official statistics because most patients and doctors don't report it via the Yellow Card Reporting sytem.

UK doctors are very behind on teaching and treatment so are unaware of the link to low brain iron, the fact many meds cause or trigger RLS and that Ropinirole and Pramipexole actually cause more severe RLS and therefore are no longer first line treatment.

There is hope.

First raise iron levels and ensure you're not on meds that trigger RLS.

[Restlesscub]

sorry yes I mean 3x 0.5mg of ropinirole per night. I’ve had this dose now for almost 3 years and it’s what the doctors put me on. Ive just got in contact with them and they’re going to make me an appointment and I’ll raise these issues with them. Thankyou

[SueJohnson in reply to Restlesscub]

That's a relief - I was afraid you meant 5 mg. Still my advice holds.

[Joolsg in reply to Restlesscub]

Bear in mind RLS is not taught at medical school in the UK so your doctor will be looking at outdated prescribing guidelines which say 4mg is the max dose of Ropinirole. So they will suggest increasing the dose. That is a really BAD move.

RLS experts in the USA used to limit Ropinirole to 1mg. Any increase raises risk augmentation and when that hits your RLS becomes much worse, starts earlier in the day, moves to hands, arms, back and face and withdrawal from higher doses is far more difficult. Worse than getting off crack cocaine!

Educate yourself so you can argue your case. Raising serum ferritin above 100 is the first thing that should be done, then replacing any anti Depressants, sedating anti histamines, beta blockers, statins or PPI meds.

I suggest you print off the Mayo Clinic Algorithm and also this short teaching post from the main GP teaching company in the UK. You will see that they also warn about dopamine agonists.

nbmedical.com/kiss/kiss-res...

[SueJohnson in reply to Joolsg]

I don't know about "used to" but they don't limit it to 1 mg these days in the US. They limit it to 4 mg. According to the Mayo Clinic Algorithm "Most patients require 2 mg but total daily doses up to 4 mg are FDA approved." That is what my doctor eventually stopped me at when I was augmenting.

[Joolsg in reply to SueJohnson]

Dr Buchfuhrer mentioned to me that he and others ( Winkelman etc) have tried to convince other RLS doctors to reduce the max from 4mg to 1mg but met such resistance that they agreed to 4mg in the algorithm. It's quite frightening and you wonder whether big pharma is applying pressure behind the scenes.

But you're right, the max is 4mg on all the med leaflets here in the UK and doctors follow the pharmaceutical guidelines and the limits set out by FDA in US and in NHS guidelines here in UK.

As we know, it's very difficult to get down from 4mg.

[Steveo2]

Hi restlesscub

I have been taking ropinirol fo a number of years i take 3.5 mg split in to two doses 2.5 at

8 oclock 1mg at 10 oclock i find by splitting the dose it keeps any side effect to the minimum and gives the body time to absorb the drugs

i have not had any augmentation after 20 years of taking ropinirol fingers crossed

When you say 500mg do you mean 500 mocrogrammes

[Salisbury71]

I would recommend you talk to your GP about changing to Pregabalin. I had been taking Pramipexole for many years but ultimately the tablets were actually making it worse (augmentation).

[Doings]

i think change your doctor and tell them why. Some (mostly all) GP’s dont get training for RLS and are not interested in learning.

Im on Pregabalin now for over a year which seems to help me. Before that i was 26 years on Pramipexole before reading on this forum that my worsening problems were augmentation. My GP was totally shocked that they hadn’t noticed id even been on it. I moved house recently and am terrified my new GP will be indifferent.

Im managing ok right now but previously i have been suicidal some nights.

Good luck and im sure someone on this forum might be more help to you than me.

[TeddiJ in reply to Doings]

Order some kratom or hirsuta powder for those desperate nights. Life-changing.

[Typicallygaslit]

I didn’t tolerate Ropinirole or any other dopamine agonist to begin with and not Gabapentin either, so I’m trying to get the GP to prescribe a low dose opioid until I can see a neurologist, but it’s like getting blood out of a stone. I’ve been taking high dose iron but haven’t seen improvement in RLS. Keep learning about RLS and keep pushing the doctors.

[TeddiJ in reply to Typicallygaslit]

Order some kratom or hirsuta powder until you can figure something else out.