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.
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susiehandley
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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.
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.
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
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.
Thanks Joolsg! Ya two different doctors in Brisbane have told me that they can only prescribe Targin for twice daily use, and can only give a script for 2 weeks at a time and then I have to go back and pay the pharmacy again for the next two weeks. They say that the computer system won’t allow them to prescribe more!
Hi Deprived. You’re very young for such severe RLS. I realize from your posts you’ve had it for a while and that initially marijuana helped but are you taking any other non-RLS drugs such as SSRIs or birth control?
You also indicated that you can’t take alpha 2 ligands because you are trying to get pregnant again and believe opiates are safer during pregnancy. I’m not sure they are. medlineplus.gov/pregnancyan...
I honestly have no words. We have similar illogical rules here in the UK.There was a popular comedy sketch about 15 years ago where the character refused every request with
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.
Thank you very much for this advice. I will start tomorrow taking 2 x5mg Targinact every 6 hrs (9am, 3pm and 9pm), and reduce the Pregabalin. Hopefully I won’t feel so drowsy and I’ll let you know in a few days if this has helped.
Stay on the same overall daily dose, but just spread it out more evenly to avoid mini opioid withdrawals.And reduce pregabalin VERY slowly as that can also cause withdrawal symptoms.
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.
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.
Also, if you look at my first question, I am not even seeking medical advice, I am simply asking a question about Targin in the UK (I am in Australia). Because I found this medication helpful for me, but it didn’t last 12 hours. The advice on this forum is that Targin needs to be taken 4 times a day to give full coverage, but doctors here won’t prescribe it. I don’t know why you have come to all of the conclusions that you have based on these questions? I don’t even have access to Targin right now so it’s not like I can take this advice and go find Targin on the street to take multiple times a day…
It’s all too common that we (including, and especially me), advise people on how to treat their RLS, before asking about other medications they are taking that might be triggering their RLS symptoms. Then, rather than recommending say an opiate or Pregabalin, we would suggest stopping the trigger ie HRT or switching the SSRI to Wellbutrin. I read your posts and saw that no one had asked you this question.
You would be surprised at how many people keep plugging away (and plugging away) at their doctors until they’re given Pregabalin, opiates, Bup, or iron infusions based on recommendations from us alone. Those recommendations may never have come had we known about the other medications mentioned above. I did not want you to become dependent on a drug if something as simple as switching out antidepressants would greatly reduce your symptoms. We’ve seen people with B12 deficiencies whose RLS improved when this deficiency was corrected.
You’ve had awful, nightly RLS since your teens/twenties. Believe it or not, this is rare. What’s very common is for someone to be prescribed an SSRI in their 20s and then have their mild, intermittent RLS become unbearable.
I wish you much luck getting healthy and pregnant. 🌈✨
Thank you, and I apologise that I got quite feisty. I think I felt that I had to defend myself and I constantly feel the need to defend myself to everyone due to this condition.
It’s interesting to hear how rare it is that my symptoms are so severe. I really wonder what could have triggered this.
Thank you for your genuine care for my health and apologies again for my reaction.
Just to belatedly add to this discussion. I take two 5mg Targinact over 24 hours and it works for me. I am in the UK and have no problem with the prescription. My GP is good and surprisingly one of Chaudhuris team in London was very positive about opiates.
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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
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