Orrel wrote:I gave up tapering on my own. The agony was too horrendous. I saw a rls specialist today. I am more confused than ever. Even though I augmented on .50mg of mirapex (.25 twice a day) he wants me to continue on it for another month or so AND use the Neupro patch (2 mg.) At the end of the period he will see me again and wean me off the mirapex. This seems to fly in the face of what I read on this website, especially the caution that once you augment on one DA you will augment on another. He gave me another option: Take an increasing dose of Lyrica along with the .50 mg, of mirapex, then wean off the mirapex after my next appointment. He was not open to the idea of using an opioid to get me off the mirapex. Would the build-up of Lyrica over the next few weeks be enough to allow a tapering of the Mirapex without
dreadful symptoms?
I think it is relatively clear that eventually almost everyone does augment. The key is how long does it take before it happens. Some people have taken one of the drugs successfully for ten year or longer before it happens!
As Beth noted, the algorithm that many doctors follow suggests to try a second DA if the first one fails. While this suggestion was made before the doctors realized that most people apparently eventually augment, the length of time it takes to augment, to me, should be part of the decision.
If it took a few days or a few weeks, maybe some doctors would suggest a switch to rotigotine- I do not know - but my guess is that some would say it's time to try a different class. But, when it takes a year or more to augment, I think many doctors think it's a a fine idea to try another DA. If it had taken me a couple or more years to augment on pramipexole or ropinerole, I'd have been perfectly willing to try rotigotine hoping to get a few more years out of it. All indications are that there are fewer issues with augmentation with it and you might get many years from it.
Another factor is how severe the augmentation is. If relatively mild, a doctor may feel that swapping for another DA isn't that big of a deal and not stop the first one with an opioid. The more severe the augmentation, the more likely a doctor will either use an opioid. It could be that your doctor feels that your case is manageable this way. In speaking to Dr Buchfuhrer over the past few years, I've often heard him say that what he would do is not the same as what Dr X would do. I think many of us here have a tendency to quote the "Clinical Management of Restless Legs Syndrome" which was written, in part, by Dr B. But, not all doctors agree completely - so sometimes what is said here is different from what some specialists do. It doesn't necessarily make it wrong.
That said... given what we know now about augmentation, my guess is that the next algorithm will look different. Since most of us eventually augment (with the exception of rotigotine - not enough data and it's supposed to be better) - whether it takes a few days or many years - my guess is that the doctors will eventually suggest we start with the alpha 2 delta ligands, not the DAs. If they fail, then rotigotine would be next. I'm not sure where the other DAs will come into the equation - maybe the algorithm would suggest that they are only used when serum ferritin is over 100. I think one of the Johns Hopkins docs may have already suggested he feels that we shouldn't start with DAs. I know that would be my suggestion, but I am not a doctor!
Orrel, if you are uncomfortable using another DA, you could ask to try Horizant instead. Many people do very well on it.
In terms of starting the rotigotine directly without tapering, that's another one of those "doctor's choice" things.