Getting off mirapex

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Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Getting off mirapex

Post by Orrel »

I have augmented on mirapex and will be seeing a rls specialist in three weeks about getting off. I am rather apprehensive about this. I understand that various drugs (lyrica, gabapentin opioids etc) can make this easier. To what degree do they do this or will I still have to suffer hell on earth? If opioids are prescribed, will I become addicted? Has anyone tried marijuana?

ViewsAskew
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Re: Getting off mirapex

Post by ViewsAskew »

Hi Orrel,

It's a really scary time, isn't it? I was terrified when I was in your shoes.

Opioids are really the only thing that work well for the first few weeks. Then you can switch to something else. And, no, you won't get addicted. Research shows that we're highly unlikely to become addicted (we, meaning those of us with WED/RLS). You could become dependent if you took them for a long period, however.

Once you get through the worst of it - it takes between one week to three weeks most times - your doctor can talk to you about which drugs to try next.

Marijuana does work for some of us, but not all of us. Not sure why. Some people say that the strain of it is very important. It's not likely to be enough to get you through augmentation, but it could potentially be something to use after the pramipexole is out of your system.
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.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Getting off mirapex

Post by Orrel »

Hi ViewsAskew,

Thank you for that information. Puts a few things at ease. I do have a few further questions, as of course going on Opioids does sound like a scary proposition:

- Basically what can one expect from a transition to opioids from mirapex? Will it reduce symptoms?

- I know people suffer RLS differently, but will I be able to sleep while I reduce my mirapex dosage?

I guess I'm a little nervous and any info regarding what to expect would help me weigh my options. Any further help you could provide would be much appreciated.

ViewsAskew
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Re: Getting off mirapex

Post by ViewsAskew »

How much pramipexole are you currently taking?
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.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Getting off mirapex

Post by Orrel »

.25 mg at supper and .25mg at bed time.

ViewsAskew
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Re: Getting off mirapex

Post by ViewsAskew »

That's good. It's not that high, so stopping it will be easier than if you were taking much more.

Here's what the researcher/specialists say to do. They suggest using a strong opioid, such as methadone. They usually start with 5 mg and see if that works. If you need more, they up it. They suggest, at doses such as yours, that you stop the pramipexole the same day you start the methadone or other opioid.

The opioid - at the right dose - will cover all your symptoms. When you stop the pramipexole, your symptoms will likely increase. They almost always do. The 5 mg covers many people, however. I started at 5, but needed more, so my doc bumped me to 10 mg after a couple of days. That covered terrible symptoms that were 24 hours a day.

In a couple of weeks, your doc will likely reassess. You'll either stay on the opioid or be moved to another drug. Because you haven't used many so far (at least it doesn't sound like it), it's very likely he or she will want to try a drug on the alpha 2 delta ligand category - these include gabapentin, pregabalin, and gabapentin encarbil.
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.

akita007
Posts: 4
Joined: Sat Nov 01, 2014 11:46 am

Re: Getting off mirapex

Post by akita007 »

Orrel,

It was not as hard to come off mirapex as it was going off requip but I was on requip for years. No I did not sleep but then I had no other drugs to take either. The opiates helped me third time around when I had to get off of the DA's and they are my drug of choice though I am having a hard time getting a script for them since the law changed. It is bad, I have been there several times but with the opiates it will be easier, I am sure. I so want to try marijuana but have no source since it is not legal in Texas. I walked a lot all hours of the day. Actually I have a treadmill now in the dining room that I bought for recovery after back surgery and I use it all the time when the RSL kicks in. I play games (Candy Crush and Plants VS Zombies2) on the iPad and before I know it an hour has gone by and my legs calmed down for a bit.

Good luck and I hope it goes easy for you.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Getting off mirapex

Post by Orrel »

I take .25 mg of mirapex at supper time to get me through the evening and .25 mg at 9:30 to get me through the night although nights have been a challenge because of augmentation. I am going to see a rls specialist on Monday about getting off the drug. Last night was worse than usual and this morning I discovered why. I had forgotten to take the 9:30 pill. Given this fact, last night, although difficult, was not impossible and terrible. I am thinking about not taking the 9:30 pill tonight and seeing what happens. Maybe I can get my dose down to .25 mg by the time I see the specialist. Does anyone have any thoughts on this strategy? Thanks

ViewsAskew
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Re: Getting off mirapex

Post by ViewsAskew »

You can try it. You'll likely have increased symptoms, but it may not be unmanageable.

You might want to not take the earlier one, though. It's easier (to me) to get through the evening by moving around. But the 9:30 one is what helps you get through the night.

But, try it either way and see how it works for you.
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.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Getting off mirapex

Post by Orrel »

I made it through last night (the second night) with only .25 mg. taken at 9:00 pm. instead of that dose AND the .25 mg dose taken at 6:00 p.m. It was more difficult than the first
night but I am hanging in. According to The WED Foundation literature, things start to improve after 72 hours of a reduced dose. I hope they are right.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Getting off mirapex

Post by Orrel »

I made it through last night (the second night) with only .25 mg. taken at 9:00 pm. instead of that dose AND the .25 mg dose taken at 6:00 p.m. It was more difficult than the first
night but I am hanging in. According to The WED Foundation literature, things start to improve after 72 hours of a reduced dose. I hope they are right.

ViewsAskew
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Re: Getting off mirapex

Post by ViewsAskew »

Orrel wrote:I made it through last night (the second night) with only .25 mg. taken at 9:00 pm. instead of that dose AND the .25 mg dose taken at 6:00 p.m. It was more difficult than the first
night but I am hanging in. According to The WED Foundation literature, things start to improve after 72 hours of a reduced dose. I hope they are right.


Things may improve that quickly - and do for some people. For others it takes at least a week or two. I hope it works out for you that it's better more quickly!
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.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Getting off mirapex

Post by Orrel »

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?

Rustsmith
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Re: Getting off mirapex

Post by Rustsmith »

Orrel, I cannot pretend to know enough about your situation to guess why your doctor made this recommendation to you. But, I can tell you what my doctor recommended to switch me from 0.5 mg pramipexole to Neupro due to a "moderate" level of augmentation on pramipexole. I was given a week's worth of 1mg Neupro patches and was told to use them and to drop my pramipexole to 0.25mg at night. After one week, I stopped the pramipexole and switched to 2mg Neupro. My augmentation symptoms disappeared and I did not experience anything that I would have interpreted as DA withdrawal. I have now been on the 2mg patches for six months and only rarely have any WED breakthroughs. Plus, I have not seen any of the signs of augmentation that are described by the link in my signature.
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.

badnights
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Re: Getting off mirapex

Post by badnights »

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.
I hope that's not what is said anywhere reputable. It may be that you're more likley to augment on another DA if you've already augmented on one, but there is no evidence that you're bound to. In fact the standard is to try another DA - once. If you augment a second time, then DAs are out.

However, I think your doctor is doing something that not all doctors would agree with (and which Steve's doctor did as well). Some specialists would say that he should ideally clear you of the DA you augmented on, before starting you on another. The clearing or withdrawal process takes anywhere from 2 days to 2 or 3 weeks. Since your symptoms are worse during this period, there is the danger of using too high a dose of the new DA to cover symptoms that are actually only part of the withdrawal - so you start too high, which increases the risk of augmenting on the new DA.

That said, if you're not a fast augmenter, and/or haven't augmented badly, then your doctor's recommendations should work, because you won't have time to get augmented on the new DA before you stabilize from withdrawal of the old one. (Some of us, myself and Views included, augmented within days or weeks of first taking a DA.)

In further support of your doctor, the approach I outlined above was developed before the rotigotine patch was approved for WED. The patch seems to suppress, or masks, augmentation because of its longer duration of action.

Steve's experience also seems to speak well for your doctor's recommendations. I have a niggling uncertainty, though; Steve - do you feel, objectively, that it's possible you might have been able to be on 1mg now, instead of 2 mg patches, if your doctor had let you withdraw completely before starting you on the Neupro?

It certainly isn't a big enough deal to refuse that treatment, because no one really knows what's best at this point. We can't get perfection, so it becomes a matter of balancing what we want against what we can get.
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.

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