I am currently taking 10mg immediate release Shortec Oxycodone at 6pm, 10pm and again when I need to during the early hours. I manage to get broken sleep which usually equates to 4 hours, which is better than I have had in the past. This works reasonably well, however, from early afternoon my arms and legs start to get painful and uncontrollable and I go into a spell of feeling absolutely horrendous with headaches, very emotional and unreasonably angry. This evening for some reason I recalled reading on this site that Oxycodone needs to be taken over 24 hours or withdrawal could kick in - my lightbulb moment! Could this be what is happening?
I am concerned that as I have already increased from 5mg to 10mg times 3 daily (between 6pm and 2am)taking over 24 hours would result in having to increase my daily dose from a total of30mg to 40mg and possibly 60mg if I needed every 4 hours. Initially, when on 5mg times 3 I took the Longtec slow release which was absolutely no use, barely having any effect and lasting for no longer than 4 hours maximum. I am now wondering if having increased to 10mg I would be better off trying Longtec again every 6 hours to a total of 40mg daily in the hope the increased dose would cover 24 hours.
I apologise for the lengthy explanation of my situation and hope it makes some sense. I need to talk to my GP as I am really struggling to cope with the afternoon torture and I like to be armed with as much information as I can. I am incredibly grateful for all the help I have received here, it is a huge comfort to know there are people that do understand. MANY THANKS.
Happy New Year to all, here’s hoping that a cure comes soon.
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Mulberry100
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Unfortunately not. My GP tried but was not allowed to prescribe. She referred me back to the Neurologist team I have seen before, who are apparently able to prescribe if they see fit to, I have an appointment in July 2024 !! My GP is as accommodating as she is allowed to be within the restraints of the NHS and NICE and Oxycodone was the last medication left for me to try. It has been the best so far but I have already had to increase and the awful symptoms I experience before starting with my first dose at 6pm is, at times, unbearable. I’m still holding out hope for Buprenorphine but it seems there is even more reluctance to prescribe since publicity about causing tooth decay. At 76 I’m not too worried about my teeth if I could just have a few years of no restless legs!
It seems to me that you are taking the med all wrong and getting yourself into bother.
Those short acting pills last for 6 hours and are very reliable , unlike the long lasting ones that are supposed to last 12 hrs but for many people last only 8 to 9 hours .
If you have been taking Shortec 10 sooner than 6 hours apart ,you have been overdosing. You are getting high pain relief followed by severe short-term withdrawal symptoms -- which you are describing exactly.
You really must get a grip on your regime or you are going to end up a raving loony addict. Just read about the early Oxycontin addict cases.
In your case I would avoid going for long lasting opioid, and stick with the short term ones.
20 to 30 mg per day should be enough for anyone, unless there are other triggers in the mix.
Medications such as antihistamines, antidepressants, ppis ,statins ,hrt meds all will trigger RLS.
Have a good honest talk with your doctor about these issues.
You can sort this out if you act quickly and clearly.
Thank you for your reply and advice. The thought of becoming “a raving loony addict” hit home! I am already taking 30mg a day but between the hours of 6pm and 2am. My fear is that if I spread that over 24 hours I will have long periods of no relief and as I rarely have a problem until early/mid afternoon, my logic was - why use up the daily dose when I feel ok, so I use magnesium spray and Therapulse to help until I take the 6pm dose by which time I’m usually desperate. I am very wary and frightened of increasing the doses of anything having experienced withdrawal from prescribed and increased Neupro patch. Today I took my first 10mg at 3pm, plan to take another at 9pm, a 5mg at 3am, if I am struggling, and a final 5mg at 9am. Fingers crossed!
It is opposite of what you are suggesting.If you spread the 30 mg evenly across 24 hrs ,you should not experience any problems.
Apart from a short term of adjusting to the new timetable.
You are getting RLS symptoms mixed up with withdrawal symptoms.. They are exactly the same,but the causes are different.
You really need to get your head straight on this fundamental issue.
Personally, I find the oxynorm 5mg is far better than Oxycontin 10mg, and am considering changing from Oxycontin 10 twice a day and Oxynorm 5mg once a day. To Oxynorm 5mg four times a day. I know it will last better and reduce my opioid exposure from 25mg pd. To just 20mg pd.
Please read my replies to you very carefully and take it on board.
Hi there, I have had RLS for I am in South Wales and have been Px Methadone 10mg x daily from Dr Jose Thomas Who may have already known of him. I was started on 2.5mg initially, increased over a few months. This medication only helps the dreadfully cramps that requires walking for hours. The agitation and tingling is still there 24 hrs, but I can I can watch a film for a few hours. I can sleep for 4 hrs now. Previously only 1-2 hrs.Jose Thomas will Px for uk RLS sufferers outside my area I understand from others on this forum.
Thank you for your reply. I have considered seeing Dr Jose Thomas but am under Neurology at Southampton hospital and have an appointment in July (unless I get a cancellation before) when I hope they will prescribe Buprenorphine or Methadone. I am so pleased for you that Methadone is helping you, long may it continue.
Oxycodone lasts around 4 hours. Oxycontin is supposed to last 12 hours, but, for many of us, it only lasts 4 or 5 hours.You can try taking Oxycodone 5mg every 6 hours ( 20mg a day) or 5mg every 4 hours ( 30mg a day) to see if it stops the mini opioid withdrawals. I would not increase it beyond 40mg over 24 hours though.
Buprenorphine has a long half life of 24/25 hours so covers RLS without the mini opioid withdrawals.
Sadly, in the UK, only Targinact and dopamine agonists are licensed for RLS, so GPs are placed in a difficult position. If they prescribe Buprenorphine, it's 'off licence' and if anything goes wrong, they can lose their practising licence.
In some areas of the UK, Buprenorphine is red listed and only specialists are allowed to prescribe it.
Dr Thomas will see patients from England, but there may be difficulties in getting the prescription filled in Englandfrom his base in Wales. Different health authorities with different funding arrangements.
You could try speaking to him to ask if he could prescribe Buprenorphine.
If you can afford to see a neurologist privately, that might be a solution. But you would need to know that the private neurologist is willing to prescribe Buprenorphine or methadone.
Thank you for your reply. I know I do need to change the regime I am using at the moment. As I have a few 5mg Oxycodone left and the current prescribed 10mg I have taken a 10 at 3pm then plan to take another at 9pm followed by 5mg at 3am if I am struggling, and finally another 5mg at 9am to ensure I don’t go above 30mg a day. I will fill in the gaps with magnesium spray and Therapulse. Fingers crossed! I’m still hopeful that when I do eventually (July) get to see the Neurologist I have seen before she will let me try Brupenorphine. I am reluctant to go privately as she did say in a letter to my GP that if I had exhausted everything else she suggested ie Gabapentin, Pregabalin, Clonazepan and Tramadol and Oxycodone, Brupenorphine would be an option. Unfortunately, my GP wasn’t allowed to prescribe when she tried.
I am so very thankful for the support I have had from you and others, it helps a lot.
Mulberry, you can cut the (5 and) 10mg shortec/ immediate release oxycodon in half. This should NOT be don't with any type of slow or extended release tablets. Cutting the immediate release tablets will give you the option of playing around more with doses. Maybe a higher dose (10+5 mg) will last longer as in: has a longer suppressing effect on your symptoms and will allow you to sleep in longer bouts. If that happens, your sleep quality most likely will improve. Do try various options of dose and timing combinations to see what works best for you. I hope you will soon find a regime within your current total daily amount that will work better for you.
Thanks Lotte for your reply. I would never have thought you could cut capsules in half, or are yours in tablet form? I have just started taking two 10mg and two 5mg spread over 24 hours, but will keep your idea in mind. Thanks
I had tablets, not capsules. With capsules it may be a but more work and you may need a good scale to weigh t he powder that is inside the capsule. Sue Johnson often suggest getting an expensive jewellery scale, maybe that is an idea? I don't k ow where one would get these, I think Sue mentions Amazon.
Also, think ahead of how the preserve the other half of the powder of the capsule after you have opened it. Maybe discuss with your chemist whether pills are available. S/he will most likely advise against opening the capsule.
I'm a little confused as to why you don't want to go private, which I assume would be the same doctor you would see in July. What will make the difference in July?
Yes I am aware of that on the cost. but she said she was reluctant to go privately indicating she had considered this. In her case I was assuming she would go private with the same doctor she is seeing in July.
As I am already in the system with the NHS and have asked to be considered for a cancellation if anything comes up before July, weighing up the cost, plus the Neurologist I am under has indicated that Buprenorphine is an option, I felt quite hopeful. Also the Neurologist I am under doesn’t see private patients. I would have to go to London or Wales to see someone I have no history with. If I have to wait until July so be it, I would obviously prefer it were sooner, but RLS has dogged my life for the past 40 years, I guess I can hold on a bit longer! To some degree Oxycodone works quite well, it seems it’s a case of getting my regime sorted so that I don’t increase (not that I would) and have better cover.
Hi; I’m new here and wish so bad I could take oxy…but I’m addicted to it so I can’t take it except for emergency ugh! Wondering now about methadone. I feel for you and wish you the best, with sweet dreams…and time asleep to dream them! Lol; God bless
Thank you for your kind reply. I must admit oxycodone does work reasonably well for me, I clearly wasn’t using it correctly. I am very aware of the problems with addiction and sorry to hear you have suffered with it. I don’t know anything about Methadone but I’ve read of others having success with it, good luck if you go down that route.
Welcome to the forum. You will find lots of help, support and understanding here.
Are you still taking requip XL? Are you aware that up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatments for RLS gabapentin and pregabalin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
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.
If you are suffering augmentation you will need to come off it as it will only get worse. If so reply back here and I can give you some advice.
Have you had your ferritin checked? If so, what was it? 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 multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, 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.
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, foods high in glutamate, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, 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 (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, 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. Keep a food diary to see if any food make your RLS worse.
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.
Thank you. My last neurologist (he moved) weaned me off both kinds of Requip, including the ER. He at one point was considering putting me on clonazapam for restless legs but he later sent me for iron testing; he had added that he did not want overmedicate me….I was pissed. Still a nightly fight to sleep and now on no medication for my RLS symptoms…thanks doctor!! Fr
Be glad you are off requip but your doctor should have given you gabapentin or pregabalin. These are now the first line treatment for RLS. Ask your new doctor to prescribe one of them. Pregabalin is more expensive than gabapentin. 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). 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 at Https://mayoclinicproceedings.org/a...
You said you were sent for iron testing. Did they test your ferritin? If so what was it? If not, and the usual test for iron doesn't test it, ask for the full panel iron test as I described above.
Hi Sue, I somehow seem to be receiving messages that you have sent to BooBoobearlove due, I think, to him/her responding to my “light bulb”message. I have had a couple come to my email. No problem for me, but I would hate to think that your message wasn’t being seen after all the effort and advice you put in replying to us all.
I have had that sort of thing happen to me too, where I have received messages meant for someone else, but they are duplicates as the intended person has gotten them too, so yes no worries I got BooBoobearlove's messages. Strange isn't it.
I also realized that I was having mini withdrawals from Oxycodone. So I halved my 5:00 dose (2.5mg) and instead now take 1.25 at 3 and 1.25 at about 5. This has helped with getting rid of withdrawal symptoms ( restlessness, yawning and runny nose) .
Thank you for your reply. The great thing about this site is knowing that there are others who know what we are going through and who are happy to share their experiences.
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