Love some advice about oxycodone - Restless Legs Syn...

Restless Legs Syndrome
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Love some advice about oxycodone

Jelbea
Jelbea
34 Replies

This post is for anyone of you who can perhaps advise me about starting oxycodone or not. As I have said I have been on 30 mg. codeine for many years but for quite a while this has not been helping much at all - perhaps easing symptoms for about an hour before they break through again. What are the pros and cons of oxycodone? Can you have augmentation on it and does it work for quite a while before this happens. What do you do if there is augmentation? I see my doc on Monday and I have already had my serum ferritin result which was 189. I suppose at this level there is no need for iron. My RLS is primary - my mother suffered it and both my daughter and son have it. What a thing to pass on to one's family!!!!

Anyhow I would love to hear from you. I have been on pramipexole, gabapentin and Lyrica in the past but was unable to take any of these because of severe side effects.

I worry about taking opioids constantly but RLS is completely out of control with flailing and jerking arms and legs during night and very little sleep.

Thank you so much.

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Madlegs1

You may have tolerance to the codeine, which means your body has got used to it at the old strength, and it may need to be strengthened. If the Gabapentin and Lyrica are not tolerated by you , then oxycodone may be an option. However you also may get tolerance with it also. Dr Buchfurer has written a paper on opioids for rls , which may be worth printing for your Dr. I'm sure Kaarina can link it for you.

He reckons it is ok to take opioids under 30mg for long periods of time, 30 yrs. As long as you are not addictive personality and don't get tolerance.

I started at 20 mg but had to up it to 25 because oxycontin doesn't last the 12 hrs for everyone.

There is no augmentation involved with oxy. There may be initial reactions of itchiness and insomnia for a few weeks, but it is so well worth persisting.

Hope this helps.

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Madlegs1
Madlegs1
in reply to Madlegs1
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raffs
raffs
in reply to Madlegs1

read a great book:

blackwells.co.uk/bookshop/p...

It states in it that the company knew it wouldn't last the full 12 hours but didn't let that little fact stand in the way of their marketing.

I'd highly recommend the book a fascinating insight into the working of some Drs and their relationships with drug companies and the following relations with politicians and the movers and shakers. Frightening read as it is real life f**kery out in the open and we are unable to do much/anything about it.

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Madlegs1
Madlegs1
in reply to raffs

Right on,Raff's.

The company (Perdue) state that the product may not last for some people, but tell Drs to increase the dose, rather than spread it out into three parts ,to cover the full 24hrs.

This has led to tragic addiction problems and unnecessary deaths.

In my case, I was forwarned and resisted the doctors attempt to increase, and got an extended dose to cover the gap in cover.

Apart from success stories ,such as Raffs', with changed diet, Oxycontin is still the gold standard for rls treatment.

I still get rls, if I take triggers that will set it off. Holidays are particularly difficult, as I have little control over food ingredients. Ice cream has been particularly difficult this week.

Taking a small(250) amount of paracetamol ,generally sorts that out.

Cheers.

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raffs
raffs
in reply to Madlegs1

After an antibiotic it took a number of weeks for my body to quiet down again.

Unfortunately I have a celiac test and I need to be eating gluten a week before hand so they get a proper reading - that means several weeks of RLS again :(

To paraphrase Mr Mackey "Drug companies are baaad".

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Jelbea
Jelbea
in reply to Madlegs1

Thank you so much for your reply. I see Dr. on Tuesday and I have copied the report as you suggested. I do not know what this GP is like on the subject of RLS. I was with another practice when I was put on 30 mg. Codeine many years ago. For a very long time I have had more severe RLS and sleeping often only about 3 hours and even that was divided. I had never got around to trying to get further help and then my dear husband died from a massive stroke last October. Now I know I have to fend for myself and I could certainly do with more sleep! Is there any difference between Oxycodone/Naloxone and Oxycontin. You all responded so quickly to my post and I really appreciate this. Thank you so much.

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Madlegs1
Madlegs1
in reply to Jelbea

Naloxone cancels out the "addictive"element in opioids. I know really nothing about it otherwise. I have a feeling there have been some problems with it, but not too sure.

You could email Dr Buchfurer on this site. Click on the small yellow email icon, somewhere on the first page. That will direct you straight to the great man.

rlshelp.org

He usually replies within 24 hrs. Keep the query short and to the point.

Good luck.

You are doing a terrific job with yourself. Keep it up.

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LotteM
LotteM
in reply to Madlegs1

Madlegs, I think you mixed up naloxone with naltrexone. Naloxone cancels out the negative effect of opiods, i.c. oxycodon, on the intestines. It is aimed at preventing the constipation effect of opioids.

Naltrexone, however, cancels out the euphoric effect of (high doses of) opioids. Naltrexone was used many years ago to help with detox. They discontinued this use because of too many side effects.

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Madlegs1
Madlegs1
in reply to LotteM

Thanks Lotte, I knew I was a bit hazy on that one. Good correction. We need stable people like you here to keep mad ones like me on the right road.☢️

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LotteM
LotteM
in reply to Madlegs1

I was ‘moving’ out a small attack, thus I had time to check the info and needed the distraction. ☺️

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Parminter

Hello Jelbea

Here is a comparative chart of opioids, duration and strength, that might be useful.

emedicinehealth.com/opioid_...

And here is an article from Wikipedia that needs a little concentration, but which is very helpful in making comparisons.

en.wikipedia.org/wiki/Equia...

There are many more such charts if you Google ' opioid dose equivalent' or some such.

Here is the definitive paper, by the gods of RLS

mayoclinicproceedings.org/a...

Your dose of codeine is not very high, and each opioid acts in a different way, so by all means try a stronger/different one. You are not doing well on the codeine, and to suffer unnecessarily is not right. You cannot continue like that.

Low-dose opioids are now the first choice for refractory RLS, and patients have done very well on them for many years without increasing the dose. You do not augment, and you can get a slow-release version.

Personally, I find codeine a rather 'dirty' drug, with bad hangover effects. I now take methadone when necessary, and it is a very 'clean' drug. It is not just different in strength, it is different in action, and it makes an enormous difference.

Do not be afraid. You're not in this for the kicks, you're in this to get your life back.

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Jelbea
Jelbea
in reply to Parminter

Thanks for your quick response I have looked up all the suggestions you have made and I have a copy of the mayoclinic proceedings to show my doc on Tuesday. As I said to Mad Legs 1 I don't know how this doctor responds to RLS so I want to be as educated as possible and you guys certainly have helped me. When you say codeine is "a rather dirty drug" do you just mean hangover effects or what. I have only been on such a low dose that this has not been a problem and I have been on that for years so my body is obviously very used to it, also I never really feel any help at all from it now. I have been so sensitive to all sorts of medications in the past that I am really apprehensive but I know I cannot go on as I am at present, and now with the loss of my husband who supported me so well I really need to get on top of this if at all possible.

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Jelbea
Jelbea
in reply to Parminter

Hello Parminter and all you other kind people who have sent be so much information about starting a stronger opioid. I am not sure how to address all of you at the same time but perhaps you will all see this. I went to my GP and I must say he was very open to go along with more or less what I suggested. He did ask what I had been on previously and of course he knew I had been taking 30 mg. nightly of codeine for a long time. He suggested an antidepressive, i.e. amitriptyline or perhaps another and I told him that one tablet of ami gave my severe RLS for all the night and most of the next day. He seemed very surprised by this and said that amitrip was the one he always suggested for RLS and I said that this causes many people the same symptoms as I suffered. Anyhow we ended up with him prescribing Longtec 5 mg. which is prolonged release oxycodone hydrochloride. I am to take one of these per day and the pharmacist suggested I take it at 6.00 p.m. as RLS kicks in at 7.00 p.m. I am slightly worried about how long this will last as it suggests in one of the tables you told me to look up that it lasts 4 - 6 hours. This means that if I took it at 6.00 p.m. it would be finished about midnight - just when it need it most.

Have any of you got any suggestions or comments? I hope to hear from you as I am not sure where I go from here.

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involuntarydancer

I think you’re right. It will probably wear off. But the only way to find out is to try it. You will probably need a second dose around midnight/1am. You will have to go back to your GP for an increased prescription. But there’s no point in going back til you try it.

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LotteM

Longtec is prolonged released and intended to last longer than ‘ordinary’ oxycodon. See medicines.org.uk/emc/produc... Use and see.

Well done at GP’s, jelbea!

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involuntarydancer

Thanks, Lotte. I did indeed misread Jelbea's post. However, I recall that there have been complaints about oxycontin (a slow release version of oxycodone) - that it lasts only about 6 hours. Hopefully Longtec will be an improvement on this and provide relief all night. I remain of the view that jelbea's best option is to try the product and see how it goes.

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I found OxyContin (slow release oxycodone) very effective for my rls although I did need the maximum dose of 30mg when taking it on its own. My rls is most troublesome at night so I had to take the whole dose in the evening. This led to an markedly unpleasant physical slump at about 11 or 12 the following day which pretty much lasted til I took the next dose. It was effectively a daily experience of withdrawal and not a great way to live.

At a lower dose I didn’t get the slump but I then needed a low dose of other drugs for reasonable rls coverage.

I believe that methadone is much better from this point of view as it is longer acting. I notice that it tends to be the opioid prescibed by Dr Earley and Dr. Buchfuhrer, possibly for this reason.

Hopefully you won’t need the full 30mg so that this is not a problem but just wanted to give you the heads up. Alternatively would it be worth considering reintroducing a low dose of pregabalin (lyrics) to help keep your opioid used lower? At a low dose you might find that you don’t react so badly to pregabalin.

I found I very quickly developed dependency on OxyContin - within a week or so of constant use - and it is a deeply unpleasant experience which lasts 6 weeks or so to discontinue it so it is worth being sure about it before you start. It does sound like a stronger opioid is your best option however and you definitely should not suffer unnecessarily.

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Jelbea

Thank you so much for all your advice. I was asking Madlegs 1 about the difference between OxyContin and oxycodone/Naloxone. I could eventually perhaps try Lyrica but had a bad response before and gabapentin started me having migraines with aura so obviously I am reluctant to go back on these. I will keep all this in mind and let you all know the outcome of my appointment. Getting more than 3 hours sleep seems like a dream - lets hope it will be a dream come true. Thanks again to you and all the others who have helped.

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involuntarydancer

I hope you manage to find a workable system and get the elusive sleep. I was sorry to read above of the loss of your husband. It must be very hard for you. You are right to prioritise your health and get on top of your symptoms. It is very important to look after yourself as it is easy to get run down when dealing with bereavement.

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Jelbea

Thank you for your kindness. We were married almost 50 years and devoted to each other and so I have so many happy memories which helps with the awful loneliness. However, for me life has to go on and I am so lucky to have my sister, children and grandchildren close by.

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involuntarydancer

It can be hard to count blessings at a time like this - you are clearly a very positive person.

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Jelbea

Hi there. I have been taking 5 mg prolonged release oxycodone hydrochloride (Longtec) each evening about 10.00 pm for the last five evenings. I decided on that time to try to get the best rest I could manage. I still have the restlessness for about an hour from 11 until midnight. I then settle down and rest quite well apart from slight symptoms once or twice during the night. Some nights I have in fact slept quite well although intermittently and other nights very little sleep but able to lie very relaxed. The doctor told me to take this dosage once a day and I know this will probably not be enough but because of my sensitivities to medicines I do not want to rush things in the hope I may be able to continue to take it. I remembered from your comments that you had to take your full 30 mg. dose in order to gain benefit and you said around midday the following day you had an unpleasant slump. I actually think I am feeling something like this. I feel OK in the morning but from about 2.00 pm I feel down in spirits, unsettled, sleepy, etc for most of the afternoon. What are your thoughts on this and do you think that if I can manage to eventually go on twice daily dosage this might help. I do not want to hurry the doctor into a higher dosage as I am even surprised he agreed so readily to my trying oxycodone.

I would love to hear your views. I had only been taking 30 mg. Codeine nightly so this is probably a good bit more opioid now.

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involuntarydancer

Hi Jelbea,

It’s great that you’re getting relief from a relatively low dose but unfortunate that you get those symptoms the following day. It ‘s a difficult one. I would strongly urge you to maintain the lowest possible dose of any medication when it comes to rls. I would be very slow to increase the dose of loretec even to help with any slump the following day. I have posted elsewhere my view that chasing rls with increased doses of one drug just seems to result sooner or later in an unwinable race. In fact, my response to decreased efficacy of a drug now is to reduce the drug and use something else for a while.

The afternoon slump might turn out to be a temporary issue. In your shoes I would Stick with it for a while and see if things improve on their own.

If that doesn’t work I would try a dose of codeine in the afternoon - it’s possible that even a small dose will make a difference.

Otherwise I would try a small dose of Kratom (I don’t know if you can get it). It could be excellent in that situation.

Otherwise I would Consult the prescribing doctor.

It sounds as though you are encountering another problem associated with opioids treating rls which is alerting. I found this also - I would stay awake all night - relaxed and mellow but awake. It is tricky to combat.

I have probably mentioned it already but do make sure your iron levels are high.

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Jelbea

Thank you very much for your response. I really appreciate your thoughts and I agree that staying at my present dosage is the right thing to do. I think I need to see over the next month or so how this is really affecting the RLS. It seems to be helping reasonably well at present with much more ability to rest quietly and definitely get more sleep. The next day slump I can deal with at present and as you say this may right itself given time. I have to see the GP again four weeks from start of treatment to tell him the effect and see where I am at that stage. I am in Northern Ireland and I do not think Kratom would be available to me. Anyhow at present I can manage. At least the lying awake (as you say relaxed and mellow) is much better than jumping and kicking round the bed and wandering round the house in the small hours. Its not sleep but at least its restful. Peaceful wishes.

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LotteM
LotteM
in reply to Jelbea

Hi Jelbea, for me LDN (already at the starting dose of 1 or 1,5mg) worked well against the ‘next day slump’. And then the improved sleep also throws in its bit after a few weeks. Oh. And maybe take the oxycodon (Longtec) a little earlier to try to prevent the 11-midnight restlessness?

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Jelbea
Jelbea
in reply to LotteM

Hi LotteM Thanks for your help. Actually I took the tab at 8.45 pm this evening and am really trying to find out the best time for me. What is LDN?

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LotteM
LotteM
in reply to Jelbea

Low dose naltrexone. Put it in searchbar dor some info re it use for RLS. And google. I am about to switch off for the day. I hope we sleep well!

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involuntarydancer

Ldn is an excellent suggestion. You would have to be careful about the timings - take the ldn at breakfast - as it is an opioid antagonist.

You are right - Kratom is illegal in NI.

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Madlegs1

As a general rule of thumb, the more meds, at lowest rates, seems to be the way to go. Combos tend to avoid problems such as dependency, tolerance and addiction,and bad side effects.

It is such a huge game of trial and error.

Dr B's site has many pages of letters and answers, and a search facility, --well worth a few hours reading at 2 in the morning.😆😉

rlshelp.org

Enjoy!

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Jelbea
Jelbea
in reply to Madlegs1

To Madlegs and all my other helpers. I have failed with Lontec (Oxycodone). I took 5 mg. nightly for two months. I am sensitive to medication so I did not want to raise this too quickly. It was effective in the first month but by the end of the second month was no longer giving relief. I emailed the good Doctor Buchfuhrer and he suggested going up to 10 mg. daily. Armed with this info I contacted my GP again last Monday and he left a prescription on Tuesday for me. I took 10 mg. on Tuesday evening and all day Wed. I had an horrendous migraine headache - the worse I have experienced. I also got palpitations with a continuous hearing my heartbeat in my ear and neck. Contacted GPs at 8.30 this am and eventually got speaking to the practice pharmacist at 4 pm who agreed that I should not take any more and they would help me to get off the medication. This consisted of giving me some more 5 mg. tablets and I have to see doc to-morrow. The pharmacist was adamant that there were "plenty of good medications for RLS" and we would talk about that, even though I said I had had DAs, gabapentin, pregabalin and clonazepam, not to mention the time I was tried on Amiptriptyline!!!!!! Enough said. I did say I did not want more medication but was overruled "not at all - We'll get you fixed up". Would anyone there care for my GPs particulars as they obviously know something very special!!!

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involuntarydancer

Really sorry to hear that the oxycodone failed, jelbea.

I am super curious to know what your GP proposes given the failure of opioid, a2d ligand and dopamine agonist. Perhaps (but seems so unlikely) they have in mind the study that suggests presantin (dipyridamole) can be helpful for rls.

I wonder would you consider sticking with 5mg oxycodone and add in a very small dose of pregabalin to pick up the breakthrough symptoms. With your sensitivity to meds it sounds like your best bet is a low dose of a multiplicity of drugs rather than relying on one alone. I have found that taking a range of drugs tends to be more effective for rls even without the sensitivity issue. Also how are your ferritin levels? It is beneficial to keep them as high as possible.

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Jelbea

I will let you know tomorrow’s outcome. My serum ferritin was 187 in July so that would seem ok. I thought I might try mag.bisglycinate as it is quite a while from I have taken mag. How are you at present?

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involuntarydancer

Thank you so much for asking. My life has improved dramatically since I introduced dipyridamole- I now feel reasonable during the day unless I have had a run of very bad nights.

So I take that every day. I also take pregabalin every day but I have been gradually reducing that over the last 6 months or so and am now down to a really small dose (25mg) and hope to eliminate it in next few weeks.

Apart from these constants, I am the victim of my own anxieties. I (restlessly) oscillate between treatments because of my fear that I will become tolerant/augmented on the meds or addicted/over-reliant. The result is I am in a permanent state of withdrawal as my legs seem to require a lot of meds to calm them. At the moment I am reintroducing a tiny dose of pramipexole 0.044 mg) and withdrawing from Kratom. Pramipexole works great for me but I don’t ever want to augment again so I take long breaks from it and keep the dose very low.

It means I only occasionally feel normal but on the plus side I am a permanent experiment for myself. And I quite enjoy the sense of control I get from all the tweaking.

Sorry, I wrote a novel answering your polite enquirer!

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Jelbea

Very glad to hear of your progress and hope things continue down a good path. Well this morning I telephoned practice as told to do and the receptionist said that if the doctor yesterday had wanted me to have an appointment this morning he would have arranged it! Upshot was another doctor telephoned to "triage my need". She did not offer any other treatments and said I should taper the oxycodone 5 mg and see her next Friday. Difficult to taper a 5 mg. slow release tablet but I am going to try alternate days. I don't know how I will fare and I hope coming off won't take too long as I have to look after two grandchildren over next weekend - parents taking other sibling to start university. Wish me luck.

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