How Long On Opiates?

[elanorbreton]

Hi all! I'm up and about at 2.30 am with my legs going wild so thought I'd come and visit here. The RLS has started breaking through in the night for the last week, I started a new med 2 weeks ago (beclametasone inhaler) - I was doing a search on here to see if that drug made RLS worse and the only post that came up was one I made in 2008 asking the same question! Lol. I haven't used the inhaler since 2008, scarey coincidence?

Anyway, I'm mostly successfully controlled now with codeine - which I've been on for 3 years. It seems like a long time. What I wanted to know is if many of you have taken opiates for years (if so, how long?) and whether they eventually cause side effects.

I only have to take 2 at night and am usually RLS free for the whole night then, but sometimes I have to take an extra pill an hour later if it's not worked (though this is very rare - except for this week!)

If you have to end up increasing the dosage, is it usually because your body has got used to the drug or because the RLS is getting worse?

Sorry for such a long, waffly post!

[dogeyed]

I can comment on the long-term use of opiate derivatives for you. I've been on a mild one, Tylenol Codeine #3 (= 30mg codeine), for seven years specifically for my Restless Legs. I believe I started out with one or two per day as needed, just took it on weekends when my workweek was done and thus my legs fired up at rest, and another one perhaps midweek if my legs were spazing a lot. Eventually I took them every day, equally spaced out, sometimes split one. Then I had one increase in dose to three pills at maybe the four-year mark, I guess, and then last year went up to four pills per day, every day.

I asked for an increase because the medicine I was taking was not enough to extinguish the RLS. I have no ill effects from it, other than if I run low on my pills, my body does not like it, so I try to be careful and stick to less than or equal to my prescription, so I always have enough, especially since the fourth one I requested is if my legs are overly restless. As you know, sometimes the legs are worse than other times. Used to be three covered me no matter what happened, but as I said, eventually three could not handle it. Now, another aspect of this is, I dare say if I were to go off the medicine for a month, for example, and managed to live through that (ha), once again I could probably do with just two per day for a while instead of four, and gradually work my way up again.

The literature is true, I think, that if you take such drugs because of a health issue that forces you to have it, you will not go around trying to get some sort of buzz off it as an "addictive" thing, in fact I rarely get one, mainly because it is treating something that bothers me and others who use them. As long as it stops the RLS, I'm a happy camper. The pills for RLS are more "dependent" type things, even tho the "drug war" has made it nearly impossible for anyone to receive proper treatment for painful conditions. I mean, I'm of the mind that all people over 60 years of age should have a bottle of morphine pills in their medicine cabinet, but then again, I lived a rough and tumble life, so I got a lot of creaks and hurts.

I mean, at one time many, many years ago, cancer patients who were dying and suffering from unbearable pain could NOT GET morphine becuz of this somewhat imaginary idea of addicted dying people running around on the streets, I GUESS, trying to score heroin or something. Gee whiz. Good for Hospice, they take over a dying person's right to die with dignity and their docs and nurses are allowed to give MORE than enough opiate injections to get the terminal patients up to and over into the death realm.

Right now I am taking chemo and the body pain is unbearable for several days after an infusion, so the cancer docs gave me another opiate (I think it's Oxycodone, I forget how many mg) for that, so that I take those especially for chemo pain rather than using up my existing RLS regular pain killers, and also the Oxy is rather stronger and longer-lasting, too. I have a full bottle, but I only have to use them a couple times a day for a few days, and then I just naturally stop when the pain stops, then pick up with it two weeks later when I get more chemo in my veins. I've been using what's in that bottle for a number of weeks now.

I can only guess about if your inhaler is the culprit of keeping you awake, I mean, could be it's merely keeping you revved up OR could be it has antihistimine-like properties that will indeed ramp up the Restless Legs. So, might be you will need to talk to the prescribing doc for your inhaler about trying a diff one, tell him how some medicines make your RLS worse, or you can ask your RLS doc about it, and hopefully one of the docs will know what other inhaler would do better for you or perhaps even change your RLS opiate to something stronger than you've been on if you cannot change your inhaler. I recently posted about some antinausea pills I got that were like antihistimines, becuz it made my legs seize up something fierce, so once I eliminated a bunch, my legs went back like they were supposed to.

[ViewsAskew]

Eleanor, I've been taking some form of opioid - mostly methadone, but others, too - for at least 4 or 5 years, I'd guess, maybe longer?

No issues other than the RLS keeps changing to my doses have to change to accommodate it and I get tired of taking supplements so my stool isn't like concrete in my system!

[elanorbreton]

Thanks for your replies, it's great to hear from people in the same boat. Sorry to hear about your cancer, dogeyed. As if having RLS wasn't enough.

I don't know what happened last night but there was not a peep from my legs. Wonderful night's sleep!

I will give it a bit longer to see how I do on my inhaler. Here in England, we tend to have one GP for all ailments, so I do not see an RLS specialist or an asthma specialist or anything. Just one doctor. She's ok though. At least she's happy for me to stay on codeine, which some other doctors are not. Heaven help me if I eventually need something stronger! I think our doctors would probably have me locked away in a padded room if I ever mentioned the word 'methadone', lol.

[Neco]

I've been on opiates for around 7 or 8 years now. I was diagnosed shortly after I turned 21 and have been on them ever since then.

In general, most people find that once they find a suitable dose that controls their symptoms, they can stay on it for years. The only exceptions to this are if your RLS legitimately gets worse, or if you become addicted and start increasing based on tolerance and not RLS.

I suppose I am a rather unique case in that, for the majority of the time I have been on opiates, I was abusing them as an addict (posts chronicling this are littered across the forum). There were various reasons for this, but mixed in there was also a legitimate increase in my RLS.

I am one of the unfortunate few who experience a rapid progression of symptoms only a year or so out from initial diagnosis. It went from something funny in one of my legs, to both legs, to both arms, and even in my torso in general. My symptoms now put me in the most difficult case group, with Refractory RLS/EKB which is 24/7 misery if I were not medicated.

I've been on various medications: Codeine, Hydrocodone, Oxycodone, Tramadol, and now Methadone for roughly 2 years now.

I have the same concerns that a lot of people have, in how long I can get away with my Methadone working now that I have been on a consistent dosing range, and dosing schedule for the past two years..

I'm sure at some point I could squeeze an increase or two out of my doctor, however I don't think I can tolerate more Methadone than I take right now (15 - 20mg) because I start seeing adverse effects once I go above 25 - 30mg..

The hit to my breathing is much more noticeable.
The fatigue is a bit worse (ironically the fatigue is what allows me to have a normal sleep schedule for the first time since I was a baby but I am prone to middle of the day naps that are hard to wake up from too)
I get this weird hiccup problem whenever I smoke a cigarette (only when I'm in the middle of inhaling...ugh) and then I also get paradoxical insomnia (so tired you can't fall asleep).

So it bothers me to see how other people on the forum who had been on Methadone before me, eventually failed and had to be taken off for various reasons (side effects, or worse it just stopped working for the RLS).

But overall most opiates you will find are safe long-term at low doses and have no real life threatening side effects that I know of.

I did read something once about a study of Oxycontin users (illicit users) who developed hearing loss issues but I don't think I've experienced anything like that, personally.. I do have this weird problem where I interpret music at a higher BPM than it is actually playing (speed increase but not pitch) but that's about it and I think is something unique to me. I've always been sensitive to things like that I think; as a kid I used to be really picky about what walkman I would use because I felt that some played slower than others, and I could really tell when the batteries were just starting to go..

I don't think you have anything to worry about though.. Codeine is relatively mild stuff, and it sounds like you are on a pretty low dose. But you have lots of alternatives ahead of you if need be. At least as far as opiates go.

[Polar Bear]

I am also UK, and work only with my GP for relief of symptoms. I take ropinerole and also opoids. Initially it was codeine which was not sufficient and now I have taken tramadol daily for over 2 years. (200mg spread over the afternoon and evening).

My GP is very helpful but once I did mention the methadone, just in conversation, and you'd have thought he had been struck by lightening !!!

Don't see really any big side affects from the tramadol. But I am on quite a few medications for other conditions. So my feelings that my Memory is not what it used to be/tired etc... could be lack of sleep, medications, age......

Regardless, I could not cope with my EKD symptons without medication and so there really is no choice in the matter.