Another new one

[mudslide]

Hi, everybody, and thanks so much for being here in cyberspace with me. I'm 70 and have had RLS a long time. Started needing meds for it in something like the late '90s. Took sinemet, augmented horribly; added oxycodone, problem solved. Switched to Mirapex when it was new and getting good press. Worked like a charm for probably about 10 years.

Recently -- the past few months -- I started to notice that I was needing progressively higher doses and that it seemed to be making the symptoms worse. I'd have to take a dose (1 mg), then wait half an hour to see if it worked or made things worse; if not, take another 0.5 or 1 mg, wait, repeat... Sometimes it would be two hours after I started before I could get to sleep. When I saw my doctor with these complaints, to my surprise he immediately suggested oxycodone, 5 to 30 mg. Great! It worked before, so I figured it would work again.

Well, nope. It's been two weeks now. The first night was heaven. I took 5 mg and slept till morning. The next night was the opposite. I didn't keep track of how many oxy doses I took, but there were several, and I only finally got to sleep by taking a Mirapex. After that I saw in the forum the posts about the difficulties of getting off Mirapex (my doc had said I could stop cold turkey). The next couple of nights I mixed the oxy and Mirapex, then dropped the Mirapex and did somewhat OK. However, when I got up to pee, the symptoms would start again and I'd have to take another oxy dose. And I inevitably woke at 5 or 5:30 a.m., not my normal rising time, twitching again. It took another dose to get me back to sleep.

Now I've noticed that the oxy seems to be mimicking the Mirapex, in that even if I have no symptoms at bedtime, once I take the oxy they start up. This has happened twice in the past two weeks. An additional problem with the oxy is daytime sleepiness; driving is starting to feel unsafe.

I'm not one of those who absolutely can't tolerate Mirapex's side effects. I didn't experience any (unless you count compulsive gardening). I'm not opposed to combining it with oxycodone if that might work. What I'd really like to try is Lyrica, but since it's an off-label usage, my insurance won't cover it.

Thanks for reading this far. Your responses and ideas would be most welcome!

[EeFall]

It seems to me you are augmenting on mirapex which is not a good thing. Usually the only way to remedy that is to get off it completely and then to take something else. A 10 year run on mirapex is fantastic, many people can't even take it for a year before augmenting. I'm sure the mods will help you out on this.

[mudslide]

A few more bits of information: As I've been reading the forum and seeing that 0.25 is the standard Mirapex dose, I'm remembering that even before the recent changes, my dosage had been creeping up over the past few years. A doc had told me the higher doses wouldn't be a problem, and really, they weren't for quite some time. I can't remember when the prescription was changed to 1-mg tablets. But now I realize I'm waaay over the amount recommended. Probably no wonder I'm augmenting. And EeFall, I do know I'm lucky to have done well on Mirapex for so long.

More about the oxycodone: Since I've been on it, besides waking and having to take a dose around 5:30 a.m., when I wake again at my normal time, I'm twitching. This was rare on Mirapex. Also, traditionally only my right leg kicked; with the oxy, a couple of times it's been the left one, and last night it was also the left wrist for a while. The oxy is definitely messing with me. Should I be asking for another opiate maybe?

[ViewsAskew]

The hardest part of augmentation, I think, is the two to four weeks after you stop the DA. It's really rough. When you stop the pramipexole (and at our doses, you can stop cold turkey) even with oxy, it can be very hard. You said the first night went well, but the next was awful -that is typical. The symptoms, at this time, often move into the arms and are increased in intensity and duration. You also often get PLMW (periodic limb movements during wakefullness). This is likely the twitching you feel.

The oxy isn't messing with you - in my opinion. It's just what happens after stopping the DA. It can last as short as 3-4 days or as long as a month.

I'm not sure how much oxy to take. I used methadone and I'm much more familiar with that.

If I were you, I'd write to Dr Buchfuhrer - he responds to patient letters. His website is rlshelp.org. His email is somno@verizon.net (I think - it's on the website to be sure). Ask him what dose you should use with the oxy, if sustained release is better than regular, if methadone is better (some docs cannot/will not write for it), and anything else you want to know.

If you have an extra $30 USD, there is a great book called Clinical Management of Restless Legs Syndrome - written by Lee, Buchfuhrer, Allen, and Hening. Get the second edition, not the first. It has a section on augmentation and covers dosing of most medications used to treat WED/RLS.

Oh - do ask your doctor to do a serum ferritin and an hemoglobin test and ake sure he/she tells you the actual results (they often just say it's in the normal range). Normal for us isn't normal for WED-free folks. We need at least 50-100 and if we take a DA, we need 100 or more. Some doctors feel that each of us needs a different amount - that some of us are OK with 50, some 100, and others need 200 or more.

[mudslide]

Thanks so much for your response, ViewsAskew. Dr. Buchfuhrer sounds like a living saint -- I'll write him for sure. Although maybe I should wait and see if my symptoms subside once I've been off the DA another couple of weeks. You give me hope that that may happen. Just a couple of questions: You say you can stop cold turkey at "our doses" -- which doses are you referring to? Mine have been from 1 to 3 mg, and I'd think the higher the dose, the more difficulty stopping. Also, I'm familiar (thanks to this forum) with what the ferritin level should be, but what level should the hemoglobin be? Now I'll go order the book. Thanks again.

[EeFall]

A few more bits of information: As I've been reading the forum and seeing that 0.25 is the standard Mirapex dose, I'm remembering that even before the recent changes, my dosage had been creeping up over the past few years. A doc had told me the higher doses wouldn't be a problem, and really, they weren't for quite some time. I can't remember when the prescription was changed to 1-mg tablets. But now I realize I'm waaay over the amount recommended. Probably no wonder I'm augmenting. And EeFall, I do know I'm lucky to have done well on Mirapex for so long.

More about the oxycodone: Since I've been on it, besides waking and having to take a dose around 5:30 a.m., when I wake again at my normal time, I'm twitching. This was rare on Mirapex. Also, traditionally only my right leg kicked; with the oxy, a couple of times it's been the left one, and last night it was also the left wrist for a while. The oxy is definitely messing with me. Should I be asking for another opiate maybe?

I took .125mg pramipexole for about 6 years before it was increased to .25mg. I was never able to take much more than that. I should have stopped at .125mg but did not know about augmenting at the time. The 3 sleep doctors I have had would never have given me more than .75mg pramipexole. Oxy is not a good substitute for mirapex in my opinion, it actually makes me a little hyper, it would be better to take a drug cocktail of several different medications. Methadone and Lyrica worked for me for several years. The methadone worked on the RLS and the Lyrica allowed me to get sleepy. There are alternatives to Lyrica though, I think you mentioned your insurance doesn't cover it and it is big bucks. It needs to be something that makes you want to sleep.

Nothing will work correctly until you are completely off of pramipexole for awhile, a month or so.

[Polar Bear]

Just a couple of questions: You say you can stop cold turkey at "our doses" -- which doses are you referring to?

mudslide- with regard to our doses.... the drug pramipexole/Mirapex is actually a medication for Parkinsons Disease, we use it for WED/RLS but take it at a much lesser dosage that patients who take it for Parkinsons.
I reckon this is what Viewsaskew is referring to with 'our doses'.

My own opinion regarding the oxy..... I think it is likely to be the withdrawal from the pramipexole that is messing with you.
Good luck.

[ViewsAskew]

Thanks so much for your response, ViewsAskew. Dr. Buchfuhrer sounds like a living saint -- I'll write him for sure. Although maybe I should wait and see if my symptoms subside once I've been off the DA another couple of weeks. You give me hope that that may happen. Just a couple of questions: You say you can stop cold turkey at "our doses" -- which doses are you referring to? Mine have been from 1 to 3 mg, and I'd think the higher the dose, the more difficulty stopping. Also, I'm familiar (thanks to this forum) with what the ferritin level should be, but what level should the hemoglobin be? Now I'll go order the book. Thanks again.

With Parkinson's patients, there is a slight but very real risk of DAAWS a syndrome that can occur. But, at lower doses, it doesn't seem to happen. I honestly do not know how low....but until a year or so ago, everyone was prescribing much higher doses of the DAs. It's only recently that the docs have realized that when you do that, you get lots of issues - such as augmentation.

Hemoglobin - not special standards for us. As long as you're in the range for the test, you're OK. You'd like know already if you are anemic, but other disorders can crop up and cause it. It's less likely for primary WED, but absolutely happens with secondary (caused by another condition).

One other option - several of us here see Dr B and we do not live in California. I fly from the midwest. Another moderator used to fly from Minnesota. Another member flies to Johns Hopkins to see Dr Early, another expert. Yet another drives many hours to see Dr Becker in Texas. I'd rather be treated where I live, but sometimes our docs just aren't expert enough and our symptoms are too contrary for them to know what to do. Not saying you are in that boat! But, if you get in that boat, know that you have another option.

[mudslide]

SO helpful to have this forum available!! ViewsAskew, I'm not ready to fly to California yet, but it is very good to know there's that option. I am fortunate in that I could afford to do it if necessary.

Having read quite a bit now, and seen that some people have had success combining Mirapex with oxycodone, I tried that last night. Took 0.5 Mirapex (a low dose for me), and when that didn't help (no surprise), 10 mg of oxy. Surprise! I slept through the night. So now I'm confused. Would it still be better for me to tough it out cold turkey, using only the oxy? Am I just prolonging the agony if I do the combination? (I realize the combo may not continue to work, but just in case.)

One of the most concerning problems in all this is the sleepiness, which really becomes noticeable when I'm driving, to the point that I'm wanting to avoid driving. Could the sleepiness be part of the withdrawal effect? Or could it be caused by the oxycodone? I don't think it's from actual lack of sleep -- despite my current difficulties, I haven't been severely sleep-deprived.

[ViewsAskew]

You are prolonging the inevitable. And, unfortunately, there is no evidence that reducing it slowly helps. When you stop, it sucks - pretty much no way around it.

The sleepiness - could be the oxy, could be the lack of sleep from the current issues, could be with withdrawal. If it's the oxy, it will be short-lived, most likely. But, do be careful!

In my opinion - and I am NOT a doctor! - the best hing to do is stop the pramipexole now. Suffer a short time, but be done with it. Once that happens, then decide if you like using an opioid or not. If it isn't the best for you, no reason to keep taking it. Even if it does work, you may want something else. You might try Neurpo - it's a patch DA. You've only augmented once (albeit likely for awhile now) and it might work without causing you issues. Or, you might try gabapentin encarbil.

If you can't use a DA now, you might eventually be able to alternate a DA with an opioid. So, lots of options.

[mudslide]

Thanks, ViewsAskew. I had an interesting night last night. I'm going to post in the Prescription Medications section rather than continuing in Just Joining.

[EeFall]

One of the most concerning problems in all this is the sleepiness, which really becomes noticeable when I'm driving, to the point that I'm wanting to avoid driving.

If you are having trouble driving their are inexpensive devices that go over the ear to alert you that you are nodding off at the wheel. I always have one in the car, two actually, in case the batteries go out. There are different kinds, some make a noise, some also vibrate. They cost from about $3 to $25 or so each. You can search under driver alert sleep warning device on Internet. A nurse at my place of work actually gave me one for free when she realized I was having problems but I lost the dang thing, probably forgot to take it off and it fell off in parking lot so I went online and bought more.