Morning Joolsg & Sue & everyoneMy latest dilemma is: as you know I am on 5mg oxycodone & 2,100 Gabapentin.
The first 4 weeks on oxycodone was bliss and I slept. Hurrah! So, with the agreement of my GP I took one less 100mg gabapentin and 2 weeks later I took another 100mg gabapentin less.
Sadly my RLS is awful again.
Do I go back up with my gabapentin, which I am reluctant to do, or do I see if I can persuade my GP to up my dose of oxycodone to 10mg (which he will be reluctant to do, I suspect) ???
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Simkin
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I second Sue. 5 mg oxy is a (very) low dose for RLS. Do have a look at the updated guidelines for the treatment of RLS in the Mayo Clinic Proceedings of 2018 (mayoclinicproceedings.org/a... 5-10mg of oxycodon is the usual starting dose (for refractory RLS) and 10-30mg the usual effective dose. Note: these are total daily amounts.
A good look at that paper is very helpful, also beyond the info on typical doses of medicines.
I agree with everyone else. 5mg is extremely low. Average dose is 30mg a day.Show GP the following link. It may help persuade him/her as it's NICE, a UK organisation.
I too am struggling. I found a GP at the practice who agreed to try me on oxycodone prolonged release as a switch from Codine that wasn’t working. She will only prescribe 10mg a day and said she refuses to go any higher. Now my rls is worse and I will have to resort to kratom. I have written again to professor Walker to see if he will write to her to get this increased. He has tried me on ropinerole and now the rotigotine patch (which neither I want to take because of the risk of augmentation ) I feel that a low dose opioid would have less side effects than the dopamine medication. He said he and other doctors even consultants have to follow the NICe guidelines which state that all rls must have trials on both of these things before they resort to opioids. It’s like banging your head against a brick wall! What’s the point of having years of medical training if they can’t prescribe what they know works. It’s the fear of litigation I think due to opioid epidemic in the USA., I have shown doctors the mayo algorithm and because it’s American based - doctors here cannot use it. In the UK there has been a greater amount of clinical trials related to dopamine medication than opioids, so the NIcE panel ( decision makers base the guideline around this) have decided this must be what is followed. Doctors cannot stray from this guidance as they won’t be protected. But the issue is money- the pharmaceutical industry fund a lot of these clinical trials and obviously they have pushed for dopamine agonists , but this harms so many people. When I challenge this I get met with -“ well the people on health unlocked are only a small percentage of people “. Well I for one am not going to risk augmenting and having my dopamine receptors damaged for the rest of my life. The guidelines need to change .
Yesterday I had the RLS so bad I felt like giving up again. It’s impossible to live with 😞. But today I’m fighting again ( or trying to at least).
Sorry for the rant - I just get so frustrated when so many of us are suffering needlessly
I totally understand where you are, both with the disease and with the docs. Both my PCP and neurologist refused to prescribe opioids because of the opioid crisis, so my neurologist referred me to a pain clinic. Pain clinics have a lot more liberty to prescribe these meds without fear of litigation. My doc at the pain clinic has prescribed first hydrocodone, then oxycodone, and now methadone. Methadone works so well! So I urge you to ask your doc for a referral to a pain clinic. Hope this works!!
I share your frustration re Oxy. Under the guidance of my gp I have been taking Oxy 5 for years for nerve pain in my feet and RA. It has also proved helpful during a bad bout of RLS. Recently my gp has moved on to specialize in palliative care and, after trying to hold on to a few patients, has gone full time into her new field. I went for an appointment with a new candidate who had been recommended to me as young and smart. Five minutes into the appt, when he saw I was taking Oxy, it became a one-issue visit. I was subjected to a half hour lecture on the evils of narcotics in seniors. In his opinion, palliative care is the only place they should be used. He even criticized my gp for doing me a disservice and quizzed me on what other options I’d tried (everything). Finally he said he would not take me as a patient until I quit.I was not allowed a word in my defence. I left feeling judged, unheard and blamed.
Same story: the other victims of the opiate crisis are those with chronic pain, for which these drugs are intended. Those of us who use them responsibly and mindfully are denied them because of those that do not.
Show him the results of the opioid study done by John Winkelman, MD, PhD done at Massachusetts General Hospital. It is entitled "Two - Year Longitudinal Data from the National Restless Legs Syndrome Opioid Registry" and can be found at RLS.org. Hope this helps, if not with this doc with another less bigoted one!!
I have just had the same with the Doctor who prescribed the oxycodone- I have just had an appointment with her and she accused me of being addict as I didn’t tell her about other supplements I was taking. I told her that they were before the oxycodone and I have stopped at kratom and even a trial of low dose cannabis oil had me hallucinating but I tried it because I was desperate like many other sufferers. Anything I see on line I try if I can buy it to see if it helps . She said that was no way she would prescribe any higher as the oxycodone is off licence for RLS . But the targinact (which is licensed for the RLS) she wasn’t allowed to prescribe . That opioids are addictive etc and she will review in one month as to if she will allow me to have it anymore . I now feel belittled and anxious beyond belief. I feel so depressed by it all . We are labelled as abusers as we ask to try opoids for the RLS. No wonder people get so desperate to try stuff like kratom etc that can be more harmful to us 😞
Most of the university programs like Johns Hopkins cut people off at 20 mg Oxy and then switch over to other types of opioids like methadone, etc. my experience is that between 10 and 15 mg is the sweet spot.
I meant to mention also that those programs use gabapentin and other less powerful drugs before going to oxycodone. After coming down off, ropinirole and leveling off with much less severe symptoms, we tried gabapentin, but it had no real effect.
What I’ve learned is that severity of symptoms has no bearing on quality of sleep, as even when my symptoms subsided considerably after being elevated from the ropinirole, my sleep was still interrupted.
Interesting. I am also finding that even with gabapentin & oxy even if my legs are calmer I am still getting up a lot in the night.I have decided it is habit.
hi Simkin, your right to suspect your doctor not wanting to increase your oxy they never are keen to up opiate scripts, but as many have mention your on a very low dose so explain how effective it was and you may have developed a tolerance, (is it slow release?) I was keen to reduce my pregabalin (same group as gabapentine) and it drastically effected me so maybe the reduction is also too quick and the oxy dose is too small. You should be ok up to 50mg which is 100mg of morphine to which the GP could be scrutinised, in some long term opiate use is not advised, but some chronic illness oxy is effective and used correctly as prescribed can give you your life back. It’s had bad press as it can be abused, but you need it for medical purposes. There are lots of prescription drugs that can be abused so if your suffering don’t be afraid to tell your GP show your feeling and how effective the Oxy was on sick a low dose, he should increase it, if not find one that will! I hope you feel better soon x
5 mg. of Oxy did nothing for me. I needed 20 mg before it was effective. Good luck. Perhaps you need a different doctor who specializes in RLS and will know that 5 mg is not sufficient.
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