Gabapentin Enacarbil (Horizant) availability in the UK

[TimeCar]

Is anyone here aware of any doctors in the UK that prescribe Gabapentin Enacarbil for RLS in the UK? It is the ONLY FDA-approved treatment for RLS that is strongly recommended by the AASM Clinical Practice Guidelines.

[Joolsg]

I tried to search for it on UK drug formularies about 4 years ago. I couldn't find it.But I do remember one UK member posted that she HAD been prescribed it.

I'll see if I can find the post.

[Joolsg]

healthunlocked.com/rlsuk/po...

This reply from 2 years ago shows that a few people had asked for it but were told it was unavailable.

However, I definitely recall one person saying they were on it in the UK.

[ChrisColumbus]

The only reference I've found to UK availability was in a British Pain Society article in 2020 which states that it's not licensed for use in the UK. However, I have seen mention of the Japanese brand of gabapentin enacarbil - Regnite - being offered by prescription through an online pharmacy here, but at something over £150 a 56 pill pack.

But also see SueJohnson, Joolsg and other responses in this post:

healthunlocked.com/rlsuk/po...

[SueJohnson]

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

Unless you have symptoms during the day which is rare unless you are suffering from augmentation you don't need horizant which is a 24 hour form of gabapentin and it is hard to get in the UK. If you really want it you can message Elsie77 or Dotmowateend who were able to get it.

Although you are correct that it is the only FDA one approved gabapentin and pregabalin are the ones most commonly prescribed by knowledgeable doctors.

I recommend instead gabapentin or pregabalin which was also recommended in the AASM guidelines and are the ones most commonly used and are easy to get. See the Mayo Updated Algorithm on Restless Legs at Https://mayoclinicproceedings.org/a...

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).

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 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.

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, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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, 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.

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.I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[XYZ888]

hi there age 84. RLS for 10 yrs. I’m in south Wales, I was prescribed for Gabapetin by my GP but I had bad effects after only a few days. I’m now on Methadone (10ml (1 yr) which helps me sleep from 4/5 hrs from the 1-2 hrs previously. But the 24 hrs crawling and heavy tingling continues Hope you find relief soon. It’s an awful disabling condition I hope a solution will be found soon for all of us. God bless all of us. X