Restless Legs Syndrome (RLS) Discussion Board

Hello,

I have augmented on Mirapex, ropinirole, and Neupro and could not tolerate Horizant. I'm currently taking 15-20 mg oxycodone and my doctor had me add Lyrica. I got up to .75 mg Lyrica and had swelling in my feet so he had me back down to .50 mg. Feet still swelling, although not as bad. While on this regime, taking one .5 or one and a half oxycodone around 8:30 p.m. and then the 1-2 Lyrica about an hour later, I would only be able to sleep for about half an hour before my legs symptoms started. I would then take the rest of the oxycodone around midnight but would be up walking every 1-2 hours all night to alleviate symptoms. It's a rare night when I sleep more than two hours in a row. I experience itching and constipation from the oxycodone.

It seems to me that the Lyrica is not adding much and may not be worth it. It also seems that I may need to be on more oxycodone or some other opiate. Or try some other combination therapy. These seem to be my options.

I will see my doc this Monday and in the past he has said I should not be on a DA with an opiate because of the augmentation factor but I see discussions here that seem to indicate people having success with this strategy in spite of augmenting on DAs. He has also indicated that if my current opiate isn't working he would switch it rather than up the dosage. I'm not sure if that means that I'm at what is considered to be the max dosage.

I'm grateful for any feedback you can give so I can be prepared for my next step.

Thanks

A longer half life opioid might greatly help you. I was never able to use short-acting opioids alone. As with you, I only got and hour or two of sleep before I was up again.

The itching sux - mine comes and goes. It was so bad a few weeks ago, I thought I'd go mad. Now this week it's gone. Weird. For the constipation - lots of options. Increase fiber, take fiber supplements, add magnesium (works for me very well), drink LOTS of water, and walk regularly. Some combination of that should help.

I wouldn't even suggest taking a DA regularly - but I do take it alternately. Works well for me and I had augmented on three or four DAs. I did take a couple years off before starting again, but I think a month or so should be plenty.

I can't remember the max dosage of oxycodone and I'm not by our "bible" - Clinical Management of Restless Legs Syndrome, second edition, by Lee, Buchfurher, Hening and Allen.

rlm, if you have not already seen Dr Earley's webinar on Opiates, you need to take a look at it now.

https://www.youtube.com/watch?v=iCNI_UCj7SI

He flat comes out and says that if you are having a problem with one opiate, then you have to try another and then another until you find one that works.

As for mono vs combination therapy, you and your doctor need to work out a treatment plan to address all of the symptoms that are specific to your situation. I am currently using a combination therapy because no single med has been able to address all of my symptoms since I first augmented on pramipexole. I currently take methadone to handle the RLS need to move symptoms, gabapentin to allow me to fall asleep, an edible (i.e., time delayed) MMJ to allow me to stay asleep once the gabapentin wears off (~ 4 hrs) and pramipexole to quiet my PLMS so that I am not constantly waking myself up when I move around. The only reason why I am still using a DA is because my PLMS is severe - and when I see my doctor in 2 weeks, we will be talking about changing from a DA and the MMJ to a benzo to keep me knocked out for 7-8 hrs once I fall asleep.

You have also probably seen where a number of our members use a combination therapy where they switch medications every few days. The idea there is that by switching from a DA to an opiate every few days, it avoid augmenting on the DA and reduces the side effect problems with the opiates to something that is "acceptable". I think that any of us would agree that we can tolerate the milder side effects for a day or two if we know that we have another four or five days when we will either be better or will be bothered by some other irritating side effect.

And to answer Ann's question about the max dose of oxycodone, the book says 10mg every 4 to 8 hrs for non-extended release form and 40mg every 12 hrs for the sustained release form of oxy.

Thank you both of you.

I am doing all of what is suggested for the constipation with the exception of magnesium so I now have something new to try. It's good to know that there is success with switching meds so that will be another option for me.

After my post, I did watch Dr. Earley's video and found it very informative and helpful. I've had a hard time accepting that I will likely have to take an opiate for the rest of my life, especially given the stigma surrounding it, and the video made me feel a little better about it.

Is it reasonable to think that I can get four (or maybe even more) continuous hours of sleep a night? I ran across a post that said we shouldn't expect total relief . . .

I don't know what MMJ is.

Thanks again.

Not only is it reasonable to think that you should get more than four hours, it should be just as important of a goal to work toward as keeping control of your movement issues. Insomnia is also a part of RLS for many of us and often goes untreated since the normal sleeping pills that doctors hand our for insomnia don't work for us. Long term sleep deprivation has been demonstrated to take a toll on your life expectancy, so you definitely should expect more. My doctor has stated that her goal is to get me to an average of at least 7.5 hrs/night. We aren't there yet, but I have improved over the average of 3.5 hrs that I was getting.

As for MMJ, that is the abbreviation that you will see throughout the discussion board for medical marijuana. If it is legal in your state, it is definitely work looking into because it has been beneficial for so many of us (but not everyone).

Thanks for clarifying what MMJ is. I've been very curious about it and would definitely try it; unfortunately, I live in MN where we have MMJ but only for a very short list of conditions. Our law is the most restrictive in the country and very few doctors here are willing to prescribe it. I'm not totally sure but I doubt that RLS is one of the accepted conditions. They also made it very expensive to the point where many people have returned to buying it on the street, so to speak.

I have tried zolpidem but it only allowed for about 3-4 hours of sleep (in addition to my other meds) and it made me very groggy the next day. Plus, Medicare restricts coverage because of the risk of falling for those over 65 which would be me. I guess I kind of got scared off sleeping pills in general.

I like the notion that you and your doctor are working towards a sleep goal as you mentioned and I think it's worth asking my doctor about it since we've never talked about it.

If your doctor is not one of the RLS experts, then he/she may not be aware of some of the latest research that indicates that RLS is not only a disease where the dopamine functions in a specific part of the brain are impaired, but that glutamates in that same area do not function properly and it is the glutamates that are probably responsible for the insomnia. That is part of the reason why gabapentin, Horizant and Lyrica work for some of us.

To get an idea of what some of the latest research into this is looking at, take a look at this article that was published 3 yrs ago. http://www.hopkinsmedicine.org/news/media/releases/restless_legs_syndrome_insomnia_and_brain_chemistry_a_tangled_mystery_solved

And I could debate you about MN having the most restrictive MMJ laws. I am a multi-generational native Texan (who proudly carries all of the baggage that that implies), but moved to CO last year partly to get access. At the time that I moved, the state had just allowed MMJ only for epileptic children and only if they had failed all "conventional" treatments. When the governor signed the bill he stated that in no way would he sign any bill that would further loosen the restrictions.

Yes, let's not argue about which state is worse; it just sucks that it's not available.

I've fantasized about moving to a state where I could get MMJ. Easier said than done. Once you did, how easy was it to get a prescription? I'm assuming you need a prescription?

The rules to get MMJ vary by state. Since CO is one of the five states that allow recreational MJ sales, getting a state MMJ card is simply a matter of getting a physician to sign a form that you have a condition that would benefit. The only advantages to having a card are that it avoids some of the taxes (which combine to about 100%) and you are allowed to have more in your possession than someone without the card. Interestingly, most doctors will not have anything to do with signing the forms. So there is a side industry of physicians who have office hours on the weekends just to see prospective MMJ patients. I got lucky in that the doctor that I saw not only was a neurologist, but he had done work during his residency with RLS research, so our conversation went from getting approval to a technical discussion of the latest RLS treatments.