Two quick ?'s changing meds....

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Rustsmith
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Two quick ?'s changing meds....

Postby Rustsmith » Mon Nov 16, 2015 4:23 pm

The following posts were lost in the database restoration that was done this morning and therefore are copied here so as not to be lost.

Postby knoxtnhorn » Sun Nov 15, 2015 7:03 pm
So I've been on Mirapex (.5) for a few years and it's starting to become ineffective.

Doc wants to wean me off and start me on Requip.

I'm to take 3 X .125 for 3 days.
2 X .125 for 3 days.
Etc... until, by Day 9, I guess it's out of my system.

1) Is it normal for the Doc to just say "good luck" and send me on my way? I've explained that I've been having really terrible nights for weeks now which include less than 2 hours of sleep (most nights), literally punching my legs to the point of bruising, inability to go to a theater or sit in a car, etc... Seems kind of odd that the answer is to basically go cold turkey for 9 days when I'm already a mess.

2) Why, or what's the point, of the weaning process? I mean, what would actually happen if I just started taking a low dose of Requip on, say, Day 5? (I was told to start the lowest Requip dose on Day 10 and work my way up.)
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.

knoxtnhorn
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Re: Two quick ?'s changing meds....

Postby knoxtnhorn » Tue Nov 17, 2015 12:35 pm

So Day 2 of this hell was last night. There's no way I can go ~ 10 more days of this. I got, maybe, 30 mins of sleep. I've probably pulled half the muscles in my body because my restlessness occurs in both legs and my left shoulder/arm. My legs are bruised in multiple places where I've just gotten so frustrated that I've ended up punching them as hard as I can. Jeez. I sound like a crackhead.

I'm a teacher with 3 kids. I'm to head to a convention tomorrow where I'll be doing some very important work. There's no way I can function normally how I feel right now.

Guess I just needed to vent. In reading this board, I understand that some/most doctors might supplement augmentation with opiods; however, in this day and age, I just don't feel comfortable asking for them. Plus, it would seem as if he would have mentioned this as an option when I told him that I wasn't sure how I was going to get through this.

What would y'all do?

Rustsmith
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Re: Two quick ?'s changing meds....

Postby Rustsmith » Tue Nov 17, 2015 12:57 pm

I am facing your situation very soon. I augmented on my second DA over the summer. When I went to my doctor he gave me 3 options. 1) switch from Mirapex+gabapentin to Lyrica. 2) increase my dose of mirapex and 3) switch to an opiod. I have a major move coming at the end of this month, so #3 did not seem like a good move with the need to change doctors. His approach to switching has been to simply change medications rather than go through the withdrawal, drug holiday exercise. But the switch vs drug holiday approaches to treating augmentation is a current area of technical disagreement between the experts, so you pretty much have to follow what your doctor says.

For me, I didn't have much faith that #1 would work and my doctor admitted it was a long shot. So I am temporarily on more than the max recommended dose of mirapex until I can locate a doctor in my new location who will be willing to treat me with opiods. This will take some time because I will need a referral from a GP in order to get to the RLS specialists that I have identified as probable candidates.

So, what would I do if I had a pending conference, I would go back to the mirapex to get me through the conference and then schedule the drug holiday to start again sometime after the conference.

Also, have you tried a steaming hot bath to calm your legs rather than punching them? It won't help you fall asleep, but it does temporarily calm the urges for many of us.
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.

knoxtnhorn
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Re: Two quick ?'s changing meds....

Postby knoxtnhorn » Tue Nov 17, 2015 2:00 pm

I've found that anything heat related makes my symptoms worse. That's one of the reasons my wife and I sleep in separate rooms. I have to be ice cold.

I'm just going to finish up my regular dose of Mirapex and immediately switch to Requip. I can't imagine the side effects being any worse than what I'm going through right now.

I've read on here about augmentation but I've yet to come up with a truly remarkable reason as to why I can't just switch from one to the other. I'll check back on this thread a couple of times to see if anyone wants to talk me out of it.

Polar Bear
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Re: Two quick ?'s changing meds....

Postby Polar Bear » Tue Nov 17, 2015 2:13 pm

I agree, if it was me I'd go back on medication to be able to deal with the conference.

And also it takes something icy to give me a temporary relief. Before medication I used to fill a bucket with icy cold water, get my feet in, and splash it up my legs as far as possible for about 20 minutes. This usually gave me some calm to try to get to sleep.

Please remember that if you switch straight over to Requip - the dosage is different. It's x2 or x3 to get the equivalent dosage.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: Two quick ?'s changing meds....

Postby Rustsmith » Tue Nov 17, 2015 2:25 pm

The first time that I augmented on mirapex my doctor switched me over to the Neupro patch. He had me do a 2 or 3 day transition where I took a reduced dose of the mirapex while I was starting out on a lower dose of Neupro. I then dropped the mirapex and went to the full dose of Neupro. It went seamlessly and I started doing better almost immediately.
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: Two quick ?'s changing meds....

Postby ViewsAskew » Wed Nov 18, 2015 2:09 am

Here is my original reply:
Not sure this makes sense to me. When pramipexole becomes ineffective, what we really mean is that you have augmentation. You need more of the drug to do the same thing that less used to do. It happens to most people eventually.

Used to be that they'd just give you a different dopaminergic drug. But, we know a lot more now and that doesn't solve anything. Switching to ropinerole will not resolve the problem.

These days, many of the top RLS docs say that you should switch to an alpha 2 delta drug - gabapentin, gabapentin encarbil, or pregabalin - instead. And, there are two camps regarding how to do it. In camp 1, they say to stop the pramipexole (and at your dose, you could just stop - higher doses need to reduce slowly, but as I understand it, 1 mg or less can just stop) and go without anything for ten days. This is important, they say, to reset the receptors in your brain. You WILL be miserable. After ten days, start the gabapentin (or other similar). Slowly increase it ever three days until you get to an effective dose.

Camp 2? They say that you need something to help you stop the pramipexole as it's very likely your symptoms will increase when you stop it. These docs believe that it's too hard to do without anything and that using an strong opioid will help. In 5 to 15 days, you can reduce or stop the opioid and switch to the gabapentin.
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.

ViewsAskew
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Re: Two quick ?'s changing meds....

Postby ViewsAskew » Wed Nov 18, 2015 2:14 am

Here are the possible outcomes (I've been through them all):

1. It will work fine and you will get another few to many months before you augment again.

2. It will work fine and you will get a few weeks to a few months before you augment again.

3. It will make things worse.

You'll know quickly if it makes things worse.

There are reasons, however, to try to get off the dopaminergics. You will continue to augment over time, even if this solves the problem for now. Your dose is already 100% higher than is recommended by today's top RLS docs. Now, it will be even higher. That increases the risk of augmentation. The longer and more you are augmented, the harder it is to stop. And, eventually, stopping takes up a few weeks of your life and is absolute h-e-double hockeysticks!

There is also a reason to stick with it, if only for now, if it does work. It buys you some time to come up with a new plan. And that can be worth a LOT!
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.

JimmyLegs44
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Re: Two quick ?'s changing meds....

Postby JimmyLegs44 » Fri Nov 20, 2015 10:51 pm

I posted a reply earlier, but it must have gotten lost in the database restoration.

Anyway, the gist of my post was that I would advise you to find a doctor that stays current with the treatment of RLS, as yours obviously does not. Switching from one short-acting DA to another is an outdated practice. As Ann mentioned, you will augment again eventually; you're really just buying time with that approach, and there's a decent chance it will just make it harder to get off the DA down the road.

In May 2015, a combined task force created a summary of recommendations for the prevention and treatment of augmentation. You can find this white paper under the "Topic of the Year: Augmentation" forum. Here is a link to the full white paper:

http://irlssg.org/augmentation/

For severe augmentation, there are 3 options:

1. Cross-titration to an alpha-2-delta ligand (gabapentin, Lyrica, or Horizant).
2. Switch to a long-acting DA (Neupro patch)
3. 10-day washout with no coverage

According to the algorithm, if these strategies fail, opioid treatment should be considered. Serum ferritin levels should also be checked.

It is my opinion that we will eventually find (if we haven't already) that option 1 will be the go-to option in the majority of cases. Option 2 is no good because it is still a DA, and even though it is longer-acting, you'll still likely augment at some point (my opinion). Option 3 is inhumane. Regarding the use of opioids, there is debate as to whether this simply delays the inevitable and you will still have withdrawal symptoms when coming off the opioid. Plus it is getting harder and harder to find a doctor willing to prescribe an opioid for RLS.

So we're left with option 1 as the most viable option. In any event, it will not be fun coming off the DA, but with a lot of patience and a knowledgeable doctor that can prescribe an appropriate dose of an alpha-2-delta ligand, you've got your best chance of being successful. It's possible you won't even need medication after the nasty DA is completely out of your system.

If you don't want to switch doctors for some reason, at a minimum I would provide your doctor with the augmentation treatment algorithm that is included in the May 2015 white paper.
The best way out is always through. - Robert Frost

badnights
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Re: Two quick ?'s changing meds....

Postby badnights » Thu Dec 03, 2015 8:16 am

True what everyone has said. Another point not mentioned yet - well, Ann touched on it - is why you're supposed to titrate down or wash out the first DA before starting the second. It's so you don't end up on too high a dose of the second DA. If you start the second DA while you're still augmenting (including the withdrawal period of worsened symptoms), you would need a much higher dose just to cover the augmented symptoms than if you started from baseline.

So yes it would be possible to start the second DA at Day 5, or whatever, knowing not to raise it enough to cover the symptoms because you'll end up augmenting right away if you do, and maybe you would suffer less that way, as opposed to completely washing the first DA out. But what you miss with that approach is whatever benefit lies in "re-setting the receptors" (see Ann's post) which wouldn't happen without the washout period.

I think it's insane and absolutely inhumane to withhold opioids from a patient during DA withdrawal. There is some argument that taking opioids will prevent the DA-receptor "re-set", but since opioids attach to different receptors, I don't know how much science is behind that concern.
Beth - Wishing you all restful sleep tonight
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