Getting off mirapex

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ViewsAskew
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Re: Getting off mirapex

Post by ViewsAskew »

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.
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.

Rustsmith
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Re: Getting off mirapex

Post by Rustsmith »

Beth, we will never know whether I would have been able to succeed with the 1mg Neupro patch or not. However, my guess is that it would not have been enough. I am basing this opinion upon the fact that I had to go from 0.25mg of pramipexole to 0.375mg after about the first week, but that 0.375mg worked for about six or seven months. I feel that I started augmenting then because when I moved to 0.5mg, I was still getting breakthrough symptoms and these symptoms fell into the classic description.

However, I should also note that the severity of my WED prior to any treatment was so severe that I would have been classed as "Probably augmenting" using any og the augmentation questionnaires even though I had never used a DA at that point.

Views, I don't know where they may go with the next iteration of the treatment algorithm, but my suggestion would be to decide whether to go with a DA versus an alpha-2-delta based upon which WED symptoms are the most severe. If the primary issue is need to move when attempting to rest (or confined like in airplanes or theaters) or is associated with PLMs, then a DA would seem to be preferred. However, if the greater issue is sleep deprivation, then an alpha-2-delta would seem to make more sense. There have been discussions about differences in WED and the possibility that the work at Johns Hopkins is showing that WED is not only a dopamine issue, but also probably a glutamate problem. If so, then it would seem that the initial treatment should go after the more severe of these two deficiencies. The next step in severe cases might then be to go with a combined therapy rather than simply increasing DA dosage like they currently do.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Getting off mirapex

Post by ViewsAskew »

Steve, good point about combined therapy. Many of us use such a thing and I've often felt that if we did that, we'd have fewer problems. Also, the idea of rotation seems to be important and it isn't talked about in the literature much.

My guess is that most doctors want the simplest, easiest to follow regimen, however.
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.

Rustsmith
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Re: Getting off mirapex

Post by Rustsmith »

I agree with the simplest, easiest to follow regime. A doctor has to have a capable patient and an established relationship with trust before most will be willing to let a patient self medicate. Most of the time either the physician feels the patient cannot be trusted or else we are constantly changing doctors in search of one who understands us, so we fail to develop the trust.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Orrel
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Re: Getting off mirapex

Post by Orrel »

At the recommendation of the rls specialist whom I saw Monday, I decided to go on neupro and had a good sleep last night (no rls). However, I am wondering if I should stay on it. I have high blood pressure which has been nicely controlled with medication. The monogram that came with the medication suggests that it may raise blood pressure. I had my blood pressure taken today and it was 138/86, not dangerous but higher than usual. On the information form I gave the prescribing rls specialist, I had indicated that I had high blood pressure, so he knew about it. But he prescribed neupro anyway without taking my blood pressure. I did some further on line research and discovered that neupro can indeed raise blood pressure, evidently rather substantially. Does anyone know whether the blood pressure will decrease over time as I get used to the drug?

badnights
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Re: Getting off mirapex

Post by badnights »

Orrel:
I don't know if your bp will decrease, but let's see if it raises first. It is only a little elevated, you said, so it may not become a problem.

Medication manufacturers are required to list every side effect experienced in trials, but not everyone experiences any side effects.

Steve:
There have been discussions about differences in WED and the possibility that the work at Johns Hopkins is showing that WED is not only a dopamine issue, but also probably a glutamate problem. If so, then it would seem that the initial treatment should go after the more severe of these two deficiencies. The next step in severe cases might then be to go with a combined therapy rather than simply increasing DA dosage like they currently do.
I asked Dr Allen (when I talked to him on the phone for the glutamate study) if he had any ideas how the opioid story fit in. There is undisputed evidence the the endogenous opioid system malfunctions in WED, and his neat hypothesis of glutamate causing the hyperarousal dysfunction and dopamine dysfunction causing the motor and sensory abnormalities doesn't address the role of opiates. I asked him if he had any ideas about this (opiates dysfunction causes the sensory aspect?) and although he was very aware that it was a hole in his theory, he admitted to not having any good ideas on it. He did mention that Walters was working on it.

I agree that combination therapy needs to be done way more. It is mentioned in the first two algorithms under refractory WED, which (in the second algorithm) is defined as WED that is not responsive to monotherapy with a front-line agent. I wish more doctors would give it a shot before WED becomes refractory. It does not have to be as complicated as the way we manage ourselves (if you're like me; i.e. taking this medication if we feel like we'll need it, taking less of that if feel like we can get away with it) but can be as simple as "take x mg of Horizant and y mg of Ultram every day" Or whatever. I think it needs to be done waaay more. Think of all the augmentation that could be prevented. Sigh.

I also hope they add a check for ferritin before any DAs are prescribed.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
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ViewsAskew
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Re: Getting off mirapex

Post by ViewsAskew »

I am not that familiar with rotigotine. The drug is relatively new in the US, as it was off the market for several years until they fixed the adhesive issue.

I would agree with Beth. Wait and see. if I work and the BP goes back down, perfect. If the BP goes up, then you can decide. One of the things that it's so easy for me to forget...when I see a statistics that 20% of people may have a side effect, I immediately think - wow, that's high. I forget that 80% do not. I have no idea what percentage of people have had BP issues with the drug...but my guess is that a substantial number did not.
Ann - Take what you need, leave the rest

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Orrel
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Re: Getting off mirapex

Post by Orrel »

The new regimen (2 mg. neupro patch along with continuing the .5 mg mirapex with the aim of weaning off the mirapex in about a month) worked well for the first few nights. However, I have begun to experience some symptoms the past two nights. Is this augmentation or just the body trying to adjust to the new regimen? The symptoms are not bad but the fact that they are happening is a concern.

ViewsAskew
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Re: Getting off mirapex

Post by ViewsAskew »

I really do not know.

Have you written to Dr Buchfuhrer to ask for his advice? his email is somno@verizon.net. Explain everything to him. He'll tell you what he thinks you should do.
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.

badnights
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Re: Getting off mirapex

Post by badnights »

You may be beginning to experience withdrawal from the Mirapex, simply from the reduction. That's why it's typically better to go cold turkey, it reduces the total time of withdrawal. But no matter how you do it, you need to have meds (eg. an opioid) that will get you through the withdrawal.

You probably know this, but it's best not to try for 100% symptom relief in our world. Seems always that we build tolerance or augment or otherwise hasten the next phase of our suffering if we try to eradicate our symptoms completely.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Orrel
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Re: Getting off mirapex

Post by Orrel »

Views: As you suggested, I contacted Dr. B and he essentially said he wasn't sure why I was having symptoms under the new regimen (continuing .25 mg mirapex twice a day and adding a 2 mg Neupro patch)
He did repeat his preferred way: get off the DA by stopping the DA and taking a strong opioid, but the specialist I saw isn't open to this. I don't have any problems until between 3 and 4 o'clock. It seems as if the
Neupro patch isn't strong enough to stop the effects of the augmenting/rebounding Mirapex. I shudder to think what will happen when I am being weaned off Mirapex after I see the specialist on Jan.6

badnights
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Re: Getting off mirapex

Post by badnights »

Orrel, whatever happens, it will help for you to remember that it will be temporary. Once the Mirapex is gone, the symptoms will probably be completely covered by the patch. Don't give in to the temptation to raise the patch dose (even if your doctor would let you) and especially not to take Mirapex to make it all go away. I'm rooting for you!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Orrel
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Re: Getting off mirapex

Post by Orrel »

Badnights: Thanks for the encouragement. It is much appreciated. I contacted the specialist about the breakout of symptoms under the new regimen. His answer was brilliant: Keep the old patch on for 48 hours.
I have done that and I have not had any breakthrough for the past 2 nights. There must be some medicinal value in the patch after 24 hours.

Polar Bear
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Re: Getting off mirapex

Post by Polar Bear »

So glad this is working and you've found some relief.
Betty
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jakesmom
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Re: Getting off mirapex

Post by jakesmom »

I can weigh in on the getting off Mirapex. I was taking 1.5 mg per day and had major augmentation. It took me 4 doctors before I found one who would listen. The "specialists" I tried included a neurologist, 2 GP's and a RLS specialist. The neurologist wanted to keep upping my mirapex, said you could go up to 4mg per day for non-Park

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