The ideal is to get off all drugs. Oxycodone has been effective for me, so far as sleeping is concerned. I go to bed between 8 and 9 pm and now wake up only once around midnight to take a second dose to get me through the rest of the night. However, daytime sleepiness is a problem. Unless I am physically active, I fall asleep. In other words, I can’t stay awake to pray, read, drive anywhere, or work on the computer until late morning, after I’ve been active for several hours. That’s the immediate problem, and perhaps can be resolved if I find something that will take residual drug out of my system. But that's not the most serious problem. Opiates interfere with digestion, slowing the necessary processes down, and it is in the digestive tract that one’s immune system is predominately based. I have more to learn before I write more on this, but again—the best solution is to get off the drugs.
I am having some preliminary success, I think, with oral iron. I tried to get my GP doctor to prescribe IV iron, but he didn’t feel I qualified, even though my ferritin level at 41 is well below the 300 or so that people with RLS need. But he admits his lack of knowledge about RLS, so …. I read what Dr. Christopher Earley out of Johns Hopkins (Baltimore) advised, which is to take oral iron for 3 months and if that doesn’t help, then I may well be a candidate for IV iron infusion. I would certainly have a stronger argument for it to present to my GP. So I have been taking oral iron for 2 months now—initially just 27 mg ferrous bisglycinate capsule, then added 10 mg liquid ferrous bisglycinate to that, and now I take 10 mg liquid plus 54 mg (2 capsules) ferrous bisglycinate most nights. I occasionally take a lower dose, just to give my body a break.
A few nights ago, I actually slept two hours without RLS past the time I normally wake up due to restlessness and have to take a second dose. A few nights ago, since it was already 2 am, I took only 1/3 of my regular second dose, and did just fine. Woke up at the usual time, and did well the rest of the day. Last night again, I slept past the usual wake-up time for second dose, but my legs were more active, so I took only 2/3 of regular dose, and went right back to sleep. So I am encouraged that iron supplementation, diligently followed, may be a help--at least for some of us. At the very least, if we can reduce the dosage (and thus the damage all drugs cause), it will be a positive thing.
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grandpianoman
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Taking iron every night or every other night does not increase your iron slower than taking it three times a day, the 'old' standard. See this info: acpinternist.org/weekly/arc... However, taking te iron less frequently reduces the side effects, such as severe constipation, importantly. That was the result of a study a few years ago. Which is why we advice to take the iron every other day.
Pianoman, if you need backup ti convince your doctor re the IV, read this paper and give a print to your doctor: sciencedirect.com/science/a...
Increasing your iron further sounds like a a way to go for you. So keep it up, but don't overdose on the iron, and make sure you ja e your blood iron values assessed regularly, e.g. every 3 months.
It does sound as if you're on the right track and of course, if you can, it's better to get off drugs.
I hope it continues to improve for you, but have to say that it's better to have a few shorter term more easily achieved targets to aim for than one so far away you can't even see it!
Getting off an opiate by taking iron is a long term goal, but you may feel more positive if you achieve goals in the shorter term. This seems to be about reducing the second dose. If you set yourself the goal of reducing the second goal by a certain amount be a certain date, that might help keep up up your motivation and help avoid disappaointment if you don't feel you're making progress.
I wonder if you've considered going to bed later?
Presuming you take your first dose before you go to bed, then, depending on how much you take, it's not surprising it loses effect early in the night. Additionally, if you take a second dose in the night it will leave you drowsy in the morning. I realise its a bit of a balancing act, but possibly taking a single dose, but later might be more effective in getting you through the night and waking in the morning.
I also wonder if you take any steps to help things get through your gut faster. This can be helped by drinking more, increasing your fibre intake and avoiding "binding" foods. Natural anti-constipation products can also help if taken regularly e.g. senna or lactulose. I hope you avoid laxatives, if used for too long they can have the reverse effect.
I've read that Dr Earley recommends taking a lot of iron and he does have a great reputation as an expert RLS, but taking a lot of iron orally isn't always particularly effective.
This is becasue there is a homeostatic mechanism (a biological control) that adjusts the amount of iron we absorb from the gut depending on how much iron we need. Since this mechanism judges how much we need mainly on the amount in our blood, if our blood's OK then a substance called hepcidin restricts how much we absorb.
The amount we absorb then doesn't depend on how much we take, or to put it another way the more iron you take, doesn't necessarily mean the more you absorb.
Hence to make the oral iron moree ffective, you need to consider ways of ensuring more is absorbed rather than increasing the amount taken.
Normally, I read it's better to take iron at night. This is, I believe because the gut works slower at night anyway and I guess the longer the iron's in the gut, the more can be absorbed - to some extent. Not an issue in your case!
It's also better to take it on an empty stomach.
Something I learned 45 years ago when I turned vegetarian is that it's a good idea to drink a glass of orange when you take the iron. I also drink ornage with my main meal of the day. The ascorbic acid in the orange can help the absorption of the iron. (a particular issue for vegetarians).
It's also said that you can "fool" the hepcidin into not restricting absorption by ony taking iron every other day, NOT every day.
Since iron also contributes to constipation, it might help to gut to give it a break every other day too.
If you do manage to get an IV infusion then this bypasses the hepcidin restriction., so could be nore effective for you.
I hope this helps - when you read it tomorrow. I just realised it's past your bedtime. I usually go to bed about midnight and get up between 9 and 10am. It depends what time I fall asleep.
Interested to hear your story. I take oxycodone l5 mg. extended release daily (5 mg. three times a day) and I am trying to cut down to 10 mg. daily. What do you take and is it extended release, also what is your dosage.
Sorry for all the questions but I am really interested. I feel that if I reduce further I would need the short term tablets so that I can reduce slowly. You cannot cut the extended release tabs. I have already cut my dosage by one third but I think that if I take away another third it will be too quick, therefore I need to be able to go more slowly to allow my system to cope.
I take oxycodone only for nighttime sleep; I don't have daytime problems now that I"m on oxycodone. I take 10 mg between 7:30-8:30 pm (it'll take about an hour to take effect) but it lasts only about 5 hours, so I have to take another dose around midnight. I've been able to reduce that second dose--sometimes by 1/3, once by 2/3. Am encouraged by that. Haven't tried extended release but think it's worth checking into. Maybe I can eliminate that second dose entirely. What you're suggesting makes sense, or maybe a combination of extended release and "regular" oxycodone.
Hi pianoman, I also take oxycodone. 10mg at night, the extended release version. I was and remain very tired during the day, not so much sleepy, like you, but tired. I asked dr Buchfuhrer and dr Winkelman for advice. They both suggested two things, switching to the immediate release (IR) version, the one you take, and looking into other causes of the fatigue. Re the latter, they particularly mention sleep apnea. Apnea causes daytime sleepiness. Have you ever had a sleep study? Or: do you wale up at night not (only) because of the urge to move, but maybe also gasping for breath? That said, the apnea may not be obvious at all, you may think you sleep well, except dor the legs, but it may wreck havoc on your sleep quality. Something to look into? A snore app on your phone that records your noised during the night may be a first indicator. I recently used SnoreLab for a few night. But a proper sleep study is the only reliable determinant, of course.
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