RLS Targinact & Pregabalin: is anyone... - Restless Legs Syn...

Restless Legs Syndrome

22,052 members15,847 posts

RLS Targinact & Pregabalin

susiehandley profile image
12 Replies

is anyone using Targinact and Pregabalin for RLS and what strength?

I am taking 15 mg Targinact twice a day (at 9.30 am and about 10.15 pm), together with 450 mg Pregabalin at bed time, but I’m finding I get RLS quite badly early in the evening.

Also I get really tired during the day and because I’ve mild sleep apnoea I’ve had to tell DVLA I am not allowed to drive. So I desperately need to take control of the tiredness (sleep apnea machine isn’t helping with that).

Any advice would be most welcome, especially from anyone taking Buprenorphine instead.

BTW I have VERY severe RLS when I don’t take these particular meds.

Written by
susiehandley profile image
susiehandley
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Joolsg profile image
Joolsg

I wasted 5 years on a similar regime. 25mg Oxycontin at 10am and 10pm and 150-200mg pregabalin at night.I still had VERY severe RLS and Professor Chaudhuri said there was nothing more he could do for me.

I decided I couldn't spend another 5 years being woken 3 times a night and spending 2 hours every evening walking off severe RLS.

So, I pushed and pushed for Buprenorphine.

I have been on it since June 21 & I haven't had RLS since.

You can try swapping to 5mg Targinact or just plain Oxycontin, which is cheaper for NHS, and take it every 4 to 6 hours during the day to avoid mini opioid withdrawals.

If raising serum ferritin above 200ųg and changing timing of Targinact doesn't help, then push for Buprenorphine.

I can send you words and research to use to help doctors prescribe it.

SleepDepriv3d profile image
SleepDepriv3d in reply to Joolsg

Do you know anything about Targinac (Targin) Australia and the rules here? My doctors say that they are limited at how many targins they can prescribe a month. They say the computer systems don’t let them prescribe more than a 28 day supply, which I have to get from the pharmacy each fornight, and go back to the doctor monthly. I was on 10mg and 10mg and had pretty good coverage but when I mentioned taking 5mg four times a day, they said they absolutely cannot prescribe that amount. Just curious if you know anything about this? Or if you had advice based on what people have done in the UK.

amrob123 profile image
amrob123 in reply to SleepDepriv3d

Which state are you in?

SleepDepriv3d profile image
SleepDepriv3d in reply to amrob123

I am in Queensland :) I am on buprenorphine now and about to go through the drug clinic but I’m seriously considering going back to Targin because I had the same symptom relief on 20mg of Targin, yet I need the whole 2mg of buprenorphine… not sure why

susiehandley profile image
susiehandley in reply to SleepDepriv3d

Thank you

susiehandley profile image
susiehandley in reply to amrob123

England

Joolsg profile image
Joolsg in reply to SleepDepriv3d

In the UK, the law is the same. Opioids can only be prescribed for one month.I don't understand why a doctor cannot prescribe 20mg in 5mg pills. You would be taking the same daily dose? That is totally illogical.

susiehandley profile image
susiehandley in reply to Joolsg

Sorry I’m in the Uk. I’m on Targinact which is a 12 hour release drug so it wouldn’t be suitable for use every 4/6 hrs. Sorry I can’t help.

Joolsg profile image
Joolsg in reply to susiehandley

Targinact is Oxycontin. If you're doing well on it, fine. However, many of us found it did NOT last 12 hours and that has been confirmed by the legal case against the Sackler family in the USA. (They manufactured Oxycontin). They lied to the FDA about how long Oxycontin lasted. It has been proved that it doesn't last 12 hours. And that's why many people taking it get breakthrough RLS.It's why we suggest people take it every 4 to 6 hours, to prevent mini opioid withdrawals,the main symptom of which is RLS.

SueJohnson profile image
SueJohnson

Joolsg has provided you with good advice on the opioids.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and 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 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.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

susiehandley profile image
susiehandley in reply to SueJohnson

Thank you for this information. I don’t smoke, or do caffeine, or alcohol, and I’ve tried different diets. I do find distractions and heat beneficial (I have an eke trick blanket and an electric throw, and I find deep heat spray and definitely distractions such as driving work too. I’ve had my iron and ferritin checked several times and I’ve had two iron infusions - I have ferous fumerate on prescription. I was keen to try Targinact (oxycodone/nyoxeline) when that was authorised but it never worked without pregabalin so I’m in a permanent soporific state and I can’t go on like this. So that’s why I wanted to know if anyone has had LONG TERM success with buprenorphine, specifically 2 years or more.

SueJohnson profile image
SueJohnson in reply to susiehandley

What was your ferritin?

Lots of people have long term success with buprenorphine. You could ask that question in a post.

Not what you're looking for?

You may also like...

Is there a cure for RLS?

Is there any cure to RLS. Constant sleep disturbance day and night until I take 4mg eg 2x2mg of...

Pregabalin sets off RLS

Hi, I'm on 300mg of Pregabalin each night which I take about 2 hours before bedtime. I also take...

Targinact

BEEN A WHILE. Just been given targinact for rls. I started 5mg, then10mg but now take 20mg with...

Pregabalin users

Hi I've just finished withdrawal from Pramipexole now I'm taking Pregabalin 75mg along with...

Pregabalin Overload!

Just started a new prescription of the above two days ago. I noticed I struggled to get up...