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.
I have been on Percocet ( 5mg at 9:00am, 2pm, and 7pm) but having a lot of breakthru symptoms. I suggested Methadone but my doc wants to try Lyrica. I have already tried Gabapentin and gained a pound a day for 8 days so I would rather jump off a bridge than go through that again.
Anyone have experience with Lyrica as an add on to opiates? What was your experience with weight gain? Does Lyrica help you sleep? (that is my biggest problem right now, falling and staying asleep without symptoms popping up all night)
Someone just posted about doing this in another thread written today, but added it to pramipexole.
I've used both pregabalin and gabapentin as add-ons to opioids. For me, they don't help much with the WED, but they do help me sleep. I took 100 mg gabapentin capsules and split them into two (I bought gelatin caps). I take one and absolutely get more drowsy. I seem to sleep much better.
But, when I have breakthrough, to me it's because my opioid dose is too low. There is a difference in waking up because I've got symptoms from waking up because I can't sleep.
If I were you, I'd try it. You'll know quickly if it helps or now.
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.
It is "cleaner" than gabapentin in terms of how it is processed in the body, so the side effects are usually less. I have gained a little weight but I'm pretty sure it's water retention and not actual weight gain.
I would suggest if you do try Lyrica to start at 25 mg and add 25 mg per week until you notice it helping. I think people often start at too high of a dose and then have more problems with side effects than if they went more slowly.
Tracy
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
I tried Lyrica couple of times, maybe like 5 times and it never really worked. I also tried Gabapentin two times. No luck either.
15 mg of Percocet is not much. Why don't you go to pure Oxycodone and raise the dose?
I take like 90 mg of Morphine which equals 45 mg of Oxycodone.
15 mg of Percocet is chronic severe RLS/WED like nothing.
Once I was in the hospital with my RLS/WED. There they were prescribing 80 mg of Oxycodone per day = 160 mg of Morphine.
When you have breakthrough symptoms on 15 mg of Oxycodone, then you raise the dose until they disappear. You are far away from even having a moderate Oxycodone dose. Right now I would say your dose is very low. And I think you can go from very low to low.
Adding a second drug without real reason doesn't seem to be a good idea. There is so much potential in Oxycodone. Why go through the side effects of a 2nd drug when it can be avoided to take a 2nd drug???
I like to think there are good reasons to use two drugs. This is a complex disorder with likely more than one origin. One drug may not address all the causes. Also, a second drug can keep both drug doses low - this can reduce side effects and issues.
Not saying it's always best, but that it can work - and work well.
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.
I've tried lyrica and it gave some relief. Lyrica was designed as "faster acting Gabapentin", so I expect they work pretty similar - although Lyrica is used to treat anxiety. I did put on some weight under Gabapentin and Lyrica (maybe 5-7 pounds in 3 months), but I did develop depressions that disappeared shortly after stopping Lyrica. This is something to watch for.
ViewsAskew wrote:I like to think there are good reasons to use two drugs. This is a complex disorder with likely more than one origin. One drug may not address all the causes. Also, a second drug can keep both drug doses low - this can reduce side effects and issues.
Not saying it's always best, but that it can work - and work well.
Yes, this is other side of the argument. I need to take two drugs because the opioid alone isn't enough and increasing the dose wasn't improving the situation anymore.
In the end you need to try it out and see what works best. Still 15 mg of Oxycodne is a very low dose and if this helped in the past I would first try increasing the dose to 20-30 mg before adding a 2nd drug because 30 mg is still a low dose and you can always add a 2nd med.
This would be just my way. I don't know which way would be smarter.
It seems in North America that we have to be very careful about asking for opioids. Many doctors do not understand how effective they are. Look what our member Neco is going through. He's been using methadone - without dose increases and without symptoms breaking through - for many years. But his doctor's retirement has created a horrible situation where no one will prescribe for him anymore.
It's really hard to ask for opioids when the doctor suggests something else, which is what I think happened to Joanie. Even though she knows opioids work, the doctor wants her to try something else. A lot of this depends on your relationship with the doctor, how much they trust you, and if they believe you are being honest with them.
In the past, many of us have decided to go along with the doctor when something is suggested. For some of us, sometimes it does work - it rarely does if we've already tried the drugs, but when you see a new doctor, they seem to have a hard time believing that things haven't worked. After we try the other drug and if it doesn't work, the doctor is almost always willing to listen and try the opioid.
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.
My doc will only go to 20mg total of Oxycodone. I hate to hit the top level after only 2 1/2 years (want to leave room for one more increase). Extended release oxy (without the tylenol) caused me side effects which makes no sense but there you go. I believe she thought I was asking for Methadone in addition to Percocet and that might be why she suggested adding Lyrica cause she said Methadone and Percocet would not work together. I certainly wouldn't be able to work taking both of them simultaneously I think haha. Doc never called in Lyrica and I have been sleeping again so I think I will let things lie for awhile.
I am in airport for long flight. Already taken 2 of my three doses (it is 11:00am!!). I think anxiety is making symptoms worse. Unlike Rustysmith, I have never gotten used to WED and flying. Fortunately, I love to fly so I am not nervous about that at all, it is just the sitting in one place. I do have a long layover to break up the trip, but then back on a plane for more torture tonight
Being called to line up, more later, just wanted to thank everyone for their input!!
QyX wrote:Has she given you any reason why she won't go over 20 mg per day?
I reached a dose of 80 mg after only 4 moths and then it slowly went down to 40 mg.
I wonder who else takes oxycodone here. I seem to recall that my doctor didn't want me to go over 20 mg either, but I could be confusing it with something else. The book Clinical Management of RLS unfortunately doesn't give a max daily dose for the opioids - for regular oxycodone it just says 2.5 to 10 mg every 4-8 hours. I seem to recall that I assume that I could go up to 30 mg, but that when I was around 18 mg, the doctor freaked out.
Trenkwalder, in the 2013 paper, cites 40 mg as the max.
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.
I was in the hospital that is run by Trenkwalder. There they had no problem prescribing 80 mg of Oxycodone daily and neither had my own Doctor before or past that.
I really wonder why many Doctors are so scared about opioids???
All the potent opioids like Morphine, Oxycodone, Hydromorphone, ... have no real maxium dose limit.
Everybody is different and so everybody has its own optimal dose. Some need more, some need less.
Doctors should freak around when they have a real reason and simply know their business???
When I need 100 mg of Oxycodone to sleep and feel welll ... where is the problem as long there is no tolerance devlopement?
I think it's really the perception issues. At least here in the US, the mood is definitely anti-opioid. And, the deaths attributed to these drugs has increased rapidly over the last twenty years and the number of prescriptions written has increased tremendously.
In the US, it's consider an epidemic. The proposals blame the narcotics and try to ban them in certain ways, rather than dealing with the real issues. It's maddening because one day soon, if it keeps up this way, I won't be able to get a script!
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.
I'm wondering too why they don't prescribe higher opiate doses for RLS patients. I can't remember exactly but I think I have read that tolerance happens sooner with higher doses. Also that opiate use for pain is much different than using it for RLS symptoms. You could ask dr B he will know.
ViewsAskew wrote:I think it's really the perception issues. At least here in the US, the mood is definitely anti-opioid. And, the deaths attributed to these drugs has increased rapidly over the last twenty years and the number of prescriptions written has increased tremendously.
In the US, it's consider an epidemic. The proposals blame the narcotics and try to ban them in certain ways, rather than dealing with the real issues. It's maddening because one day soon, if it keeps up this way, I won't be able to get a script!
What are the real issues here?
Medicine without opioids is just impossible.
Maybe the U.S. was too liberal in the past but right now it looks like it is going in absolute opposite direction ...
