Opiods

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Joanie60
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Joined: Thu Mar 15, 2012 2:48 pm

Re: Opiods

Postby Joanie60 » Tue Jan 20, 2015 9:14 am

I have symptoms 24/7 and am looking forward to (possibly!!) having a stretch of continuous relief for 12 hours :-). I tried extended release oxycodone but had nasty side effects (?? Huh?? I am so weird). The short acting ones have me on a roller coaster of relief ~ building symptoms ~ wait wait wait ~ take the short acting pill ~ wait for it to kick in ~ ah..... relief ~ building symptoms ~ wait wait wait......well, you guys know...

Should start on methadone next week, I'll be sure to report in!!

Joanie

Polar Bear
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Re: Opiods

Postby Polar Bear » Tue Jan 20, 2015 4:46 pm

Aahh.... the horrible roller coaster of symptoms.
I hope the methadone works well for you.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

pjmccoy1
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Re: Opiods

Postby pjmccoy1 » Tue Jan 20, 2015 6:42 pm

View: I see you're up at 12:45a.m. I guess you have had a busy day with a late start to bedtime (hopefully), or unfortunately a tough night or methadone alerting. I think you've confirmed my thoughts if shorter acting was wearing off how do we know if RLS symptoms are opioid induced withdrawal or 24/7 RLS symptoms. Thank you for your input. I hope you have a good day and a wonderful RLS free restful, peaceful, sleep filled night.
PJ, Heaven Bound

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Tue Jan 20, 2015 7:49 pm

pjmccoy1 wrote:View: I see you're up at 12:45a.m. I guess you have had a busy day with a late start to bedtime (hopefully), or unfortunately a tough night or methadone alerting. I think you've confirmed my thoughts if shorter acting was wearing off how do we know if RLS symptoms are opioid induced withdrawal or 24/7 RLS symptoms. Thank you for your input. I hope you have a good day and a wonderful RLS free restful, peaceful, sleep filled night.


I'm not sure what you mean by opioid induced withdrawal being WED. You'd have to stop taking them for several days (the long-acting) before you'd have any symptoms that approached WED (it's not technically WED according to Dr B, though most people call it that).

I had 24/7 symptoms before I ever took an opioid. The beauty of methadone, for me, was that I didn't have to treat it all 24 hours. There is enough residual in my system that the lighter daytime symptoms are covered unless I'm a total layabout. As long as I'm doing normal stuff, I rarely have symptoms in the first 4-5 hours that I'm awake that need any medication.

And, I have arranged my sleep schedule to occur much later than most people - which is why I am often here in the wee hours. I take 2/5 of my meds at 5 PM, 2/5 at 9 PM, and 1/5 at midnight, but do not usually sleep until 2 and 4 AM and get up between 10 AM and 1 PM. I can do that because I do not work a conventional job. I sometimes wake up between 1 and 5 times with very mild symptoms. Sometimes, like last night, I have none. Sometimes, likely because I went to be too late The methadone IS alerting, but this gets that out of my way. Because the drugs are so long acting, I don't have to have a full dose again before I go to sleep because the worst is covered.

I do have a few issues with methadone that I wish I didn't. But, given what I've had to deal with with other meds, I figure this is pretty good. I DO want to stay up later. Over time, my sleep schedule can get really crazy. My solution is to use pramipexole irregularly. It still puts me to sleep and I never sleep too long (it makes my mind crazy wide awake after 6 hours or so of going to bed). So, I can use it to get to bed earlier a couple nights a week, get up earlier, and the two drugs are the push/pull on my schedule to keep it sort of on track. I hate how pramipexole makes me feel - depression and a sort of angry I don't care mental state - but I've tried almost everything. The other issue is that I do have tolerance with methadone. Many people do not. It's easy to tell when it happens because you no longer can sleep through the night. But, the pramipexole occasional use also solves that for me. So - in the last 4-5 years, I've not had to increase my methadone dose and at one time had lowered it from the original tolerance. (Because I stopped taking pramipexole for almost two years, I did have tolerance again - though it seemed to take longer to happen - so it went back up to where it had been).
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
Posts: 193
Joined: Thu Mar 15, 2012 2:48 pm

Re: Opiods

Postby Joanie60 » Tue Jan 20, 2015 8:03 pm

Ann, do you mind sharing how much you take? I should get my script when I get back to Maryland next Tuesday. My doc is "low and slow" so I am not sure how effective it will be to begin with. Should I need my (quickly dwindling) stash of Percocets to supplement? I also have some (gasp) requip if I get desperate.

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Wed Jan 21, 2015 8:42 am

Joanie60 wrote:Ann, do you mind sharing how much you take? I should get my script when I get back to Maryland next Tuesday. My doc is "low and slow" so I am not sure how effective it will be to begin with. Should I need my (quickly dwindling) stash of Percocets to supplement? I also have some (gasp) requip if I get desperate.


I have no idea if you will need them. All I know is that codeine couldn't touch the WED - it's the only opioid I tried before I used methadone. I used 10-15 mg right away. I had tolerance and went up to 20, then up to 25. When I went up to 25 - about 4 to 5 years ago - I was determined not to need another increase in a year or so. That's when I started using pramipexole again. I was also determined NEVER to augment again, so I never took more than 2 days in a row, but eventually settled on alternating 1 and 1.

Due to depression and mood issues, I stopped the pramipexole completely about 2 years ago. But, about a year later, I was having tolerance. I just toughed it out for the last year. It didn't really get worse, but it wasn't fun. After the second iron infusion, I decided to try the pramipexole again and see if it would be different. The mood issues aren't as bad this time - so I'll keep doing it as long as I can.

The good news is that the vast majority of people here have not had tolerance - I'm one of the few. Many people here have taken opioids for five or more years with no dose increases.

And, many people here find that 5 to 10 mg is plenty of methadone. I'd guess that the average here - thinking of those who use it - is about 10 mg, maybe 15. We have plenty of people taking the lowest dose of 5 mg.

I wonder if you could use a dose calculator - I've seen them online somewhere....you enter how much you take of one opioid and the calculator determines how much you'd need of a different opioid. I just used one - 15 mg of oxycodone is the equivalent of 3 mg of methadone.

http://clincalc.com/opioids/
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
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Re: Opiods

Postby Joanie60 » Wed Jan 21, 2015 9:39 am

Thanks Ann!! I am with you on the tolerance thing...if methadone works, I am not going to blow this!! I will do whatever it takes to keep from having to up my dose every year :-) I'll be in touch next week!!

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Wed Jan 21, 2015 6:31 pm

Joanie, hopefully you will NOT need any methods to deal with tolerance because hopefully you will not have any!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
Posts: 193
Joined: Thu Mar 15, 2012 2:48 pm

Re: Opiods

Postby Joanie60 » Wed Jan 21, 2015 6:38 pm

:wink:

Yes Yes Yes!!

You always know what to say Ann.

Thanks!!

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Wed Jan 21, 2015 10:19 pm

Well, it's nice to think I'm word-perfect, lol, but this really is about the odds - they are truly in your favor. But, if not (as with me), at least we know things we can do.

If I were starting opioids today - I'd likely try to find anything I could take every few weeks - say a few days every other week - to interrupt that constant stream of opioids in the system. It works exceptionally well. So many of us don't have anything to use, though - we get to opioid use because we've failed the other things.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
Posts: 193
Joined: Thu Mar 15, 2012 2:48 pm

Re: Opiods

Postby Joanie60 » Wed Jan 21, 2015 10:34 pm

I think I have tried and failed every drug approved (off label) in the US. Including iron infusion. Percocet is the only thing that has worked without side effects. But because I am closing in on 20mg/day, my doc wants to try something else. She told me she only has a couple patients who need that much. 10mg would be more than enough if I only had symptoms at night but, like you, mine run 24/7.

So time will tell!! At least I can go back to the oxycodone if methadone doesn't work!

Enjoy the rest of your week!

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Thu Jan 22, 2015 6:58 am

Yeah, a few of us really have trouble, don't we? I don't wish it on more people, but I sorta do wish we weren't such outliers - the docs really struggle with us.

There are a few things I haven't tried - but they are relatively out there - like amantadine or clonidine. My drug cabinet has housed many items, likely similar to yours, Joanie! I have tried 4 in the dopaminergic category, 3 or 4 in the benzo category, 4 or 5 in the anti-zeizure - mostly alpha 2 delta ligands, but also two that were not, and at least 5 or 6 in the opioid (codeine, propoxyphene, hydrocodone, hydromorphone OR oxycodone OR both (I can't remember - it was a difficult time, lol), levorphanol, tramadol, methadone. I've taken them alone and in combination in various ways. I've also added taken a few things for sleep - one of the non-benzos and one of the older antidepressants that causes sleep but doesn't cause WED.

You get to the point that you REALLY would do just about anything. As you did, I've also had infusions.

Hey - just remembered something. Dr B has maintained for several years that IF you can keep the opioids just beneath 100% control - like at 90 to 95%, that you almost completely eliminate any tolerance issues. I'm paraphrasing, so don't quote me as him having said it, lol, but it's something to that effect.

And, it sort of is how the last year worked for me. I definitely had tolerance after a year or so of only methadone and no longer alternating classes. But, it seemed to sort of reach a point where it didn't seem to get much worse. It controlled all my daytime and evening symptoms at 98% and my sleep at maybe 85%. Most nights I could cobble together 8 to 9 hours in bed with waking somewhere from 3 to 10 times, sometimes needing only to get out of bed, walk to the bathroom, do some stretches or exercises, then back in bed. Sometimes I could even do exercises in bed - not needed to get up (I did always have to open my eyes and fake being awake - it never worked to do the exercises with my eyes closed). And, a few times a week I'd have to wander around for up to an hour or so.

All in all, it was still much better than prior to medication and it seems to be pretty stable.

So, when you start taking it, see if you can find a dose where you are just short of full control. It may be important since you've had problems with the oxycodone and tolerance.

Hmmm - the Trenkwalter study used up to 40 mg twice per day of oxy - but I think it was the sustained release. On his q&a site, Dr B says that the max dose of oxy is 10 mg, up to 3 times per day (that must be the regular). So, maybe at 20 mg you are on the higher side (and maybe very high compared to other patients in your doctor's practice), but not maxed out!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

pjmccoy1
Posts: 80
Joined: Wed Sep 11, 2013 7:00 pm
Location: Below the Mason Dixon Line USA

Re: Opiods

Postby pjmccoy1 » Fri Jan 23, 2015 7:09 pm

ViewsAskew wrote:
If I were starting opioids today - I'd likely try to find anything I could take every few weeks - say a few days every other week - to interrupt that constant stream of opioids in the system. It works exceptionally well. So many of us don't have anything to use, though - we get to opioid use because we've failed the other things.


View:
I'm not sure what you mean by finding anything you could take every few weeks. Do you mean alternating opiates, i.e. methadone a few weeks, then to hydrocodone or another short acting opioid? Would this alleviate tolerance? I've been on low dose of methadone at 9p.m. for 2 months and the last few weeks it's losing the original coverage effect. This seems early for tolerance when it was working unless RLS has progressed within the 2 months. I still am not sure if it is tolerance or withdrawal RLS symptoms..

Also another new side effect since starting methadone and lamictal-for depression. Difficulty swallowing feeling like a lump/mucus in throat constantly clearing throat but never able to resolve "lump/mucus" feeling. No sinus issues. Also having mild vision distortion, mild pain and burning and very dry left eye. In the night I have trouble opening eye without manually assisting to lift eyelid open. Off to another blasted doctor appointment today to have vision checked out. Has anyone had extremely dry eyes, mouth and swallowing issue on methadone?
PJ, Heaven Bound

pjmccoy1
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Location: Below the Mason Dixon Line USA

Re: Opiods

Postby pjmccoy1 » Sat Jan 24, 2015 12:44 am

ViewsAskew wrote: I've also added taken a few things for sleep - one of the non-benzos and one of the older antidepressants that causes sleep but doesn't cause WED.


View, do you recall which of the non-benzos and antidepressants you took for sleep? Did they help with the methadone alerting? Also, would the evil Carbidopa/Levadopa be an option to use on the drug holidays you've mentioned to possibly eliminate or slow methadone tolerance?

Update - Back from the ophthalmologist and as figured, one of the med's is most likely causing severe dry eye in addition to the extreme insomnia I've had for 15 months now. Get his, even in my depressed, anxiety ridden state, I actually chuckled to myself when the doctor asked me this question, "Has anyone ever told you that you sleep with your eyes open?" I thought, seriously, are you kidding me??!! Wouldn't one have to be in a coma to be able to sleep with their eyes wide open???... He said that narcotics can actually cause people to sleep with eyes open or partially open which causes a lot of eye trouble and eyes to get so dry that when you shut them at night and later try to reopen them it removes natural moisture barriers? This reminded me of another "crazy world" statement a GI physician said to me last October, "The reason you're losing so much weight is because you're not eating. This when when I had unexplained nausea for 24 weeks and couldn't eat anything. Anyhow, I thought I would leave you guys with a chuckle to think about tonight when you're in such a restful, relaxed, deep sleep that you forget to close your eyes and just slumber with them open... In our dreams! :roll:
PJ, Heaven Bound

ViewsAskew
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Re: Opiods

Postby ViewsAskew » Sat Jan 24, 2015 1:51 am

My eyes are dry, but were very dry before the opioids. I've had plugs put in and was recently prescribed very expensive meds (Like $2000.00) that I haven't tried yet. Sleeping with your eyes open - now isn't that fascinating! Gotta love what we go through to try and get some sleep. Yeesh.

Yes, I do mean alternating. I can't use any DA for more than a few days. Now that I've had two infusions, I'm hoping that this might be different. My serum ferritin at the 4 week mark was over 200. Need to check it again soon and see.

So - my history. Tolerance was an issue for me - don't know why, but a few of us don't seem to be lucky :-). So, at one point I was determined NOT to increase again. I tried other opioids, I'd already tried several in the gabapentin group. No luck. So, I came up with the brilliant idea of taking methadone 2 or 3 days, then pramipexole 2 to 3 days. That worked - I tend to augment in 5-7 days, so I figured this was as safe as I could get - and I didn't augment, nor did I have tolerance again for the 2+ years I did it. But, the pramipexole causes nasty side effects. Over time, I started alternating every day. Then I went to 2 methadone to 1 pramipexole. Eventually I had to stop because I was so depressed on the day after I took the pramipexole that I had suicidal ideation.

Now that my vitamin D levels hare MUCH higher (and I take 5000 IUs a day to maintain that) and I'm trying to get at least a little exercise each day, I'm tolerating the pramipexole better, so am back to alternating. I'm just trying to reduce the methadone and help with the alerting, so I'm using a full dose of methdone, then 50/50 each for two nights, then full dose of methadone. This seems to be resolving tolerance again, even though I'm not completely stopping it. I have very little to no breakthrough on the dose I've been on for several years, even though a few months ago, before I started alternating again, I had breakthrough every night on that dose.

So, yes, I think it's a great solution. And, yes, I think it *might* work to use Sinemet 1-2 days a week, then the methadone the remaining. But, it might not help the alerting.

I honestly do not remember the non-benzo. It's been awhile. Maybe zaleplon? The older AD was trazedone. Golly, it put me to sleep alright - I slept 16 hours the first time I took it. But, each night I took it, there was less of the sleepiness effect. So, after a couple weeks, it was like I wasn't taking it, so I had to increase. I can't remember if I had other side effects - seems like I might have. I wrote about it on here somewhere, lol.
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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