Getting the correct treatment

[Johan10]

My night-time RLS has worsened over the last few years causing me to get medical advice 2 months ago. I was prescribed ropinerole and take 0.5mg. Over the last week or so I've noticed a slight unpleasant sensation in the legs during the day and am going to discuss this with the GP. She is calling me on Thursday (20th Oct 2022)

I have now read the advice on this website which seems to be coming down heavily against dopamine agonists in favour of gabapentin and pregabalin - at least initially. I've also read much of the Mayo Clinic latest report and note their preference for this drug as the first line of defence.

I don't know how available these medications are on the UK NHS and wonder what the best approach is to see if my GP will prescribe it. I can quote the experiences of users of this site and the Mayo Clinic findings but am unsure what weight theses will carry? Anything further would be greatly appreciated. Thanks.

[SueJohnson]

You shouldn't have any problems getting gabapentin. I would print off the section of the Mayo Clinic article on this. If she won't read it nor prescribe gabapentin or pregabalin, change doctors. Even though you have been on ropinirole only 2 months, you will need to come off it slowly, reducing by .25 mg every two weeks. 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. The 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 split the doses with 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 pregabalin) daily." 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.

[Johan10 in reply to SueJohnson]

Many thanks for your help Sue and also to Chris and Joolsg. Ferritin was 390 and B12 the low end of OK, I didn't see that a TSAT test had been done, I'll take that up with the doctor along with the Mayo and NICE recommendations. Thank you again.

[ChrisColumbus]

While NHS guidelines still point to DAs, UK NICE 'Management of RLS' revised July '22 now says:

"What drugs should I consider to treat restless legs syndrome?

First-line recommended drug options for people with frequent or daily symptoms are either:

A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or

An alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications)."

Hopefully you can convince your GP to switch to the latter (link should be OK if in UK and not using VPN)

cks.nice.org.uk/topics/rest...

[Joolsg]

Most UK GPS prescribe pregabalin off licence so pretty sure they'll agree.

However, did they do full panel bloods first? 60% will resolve RLS by raising serum ferritin above 100, preferably 200.

As you've only been on 0.5mg Ropinirole for 2 months you could quickly reduce it but start pregabalin first as it takes 3 weeks to be fully effective. Take the opportunity to educate your GP by showing them the Mayo algorithm and point out that worsening of RLS is inevitable for most on Ropinirole or pramipexole.