Getting off Lyrica

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

Getting off Lyrica

Post by Orrel »

Many write about the hell of getting off Mirapix. From what I read, it is just as
hellish to get off Lyrica. In order for me to get off Neupro and Mirapix, my WED
specialist has put me on Lyrica. I started slowly with 75 mg. on Sunday night and will
reach the maximum of 300 mg. on March 29. I hope I never have to come off it because
of side effects or augmentation. Evidently Lyrica can augment although at a lower rate than a DA.
The stories I have read of those who did try to get off it are very disturbing. Does anyone have any
personal experience of getting off Lyrica?

ViewsAskew
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Re: Getting off Lyrica

Post by ViewsAskew »

Orrel, I've never seen any research or studies that show pregabalin can cause augmentation. Did your doctor tell you that? I'd like to know his sources. If on a Website, was it from a person or based on a scientific study?

I also have seen no information that pregabalin is effective in helping get through with withdrawal of pramipexole. Please consider writing to Dr Buchfuhrer for another perspective. I know your doctor will not prescribe opioids, but I think it's important for you to get a second opinion.

Pramipexole is only hard to stop if you have augmented. Without augmentation, it's very easy to stop. As I understand it, stopping pregabalin requires a gradual process and there is an increased risk of seizures. This drug can cause severe physical dependence and can be very hard to stop for some.

I took it and stopped it easily - but was not on it for long enough to be physically dependent. As with most drugs, some people do not have problems - some do. There is just no way to know if which group you might be in. Almost every medication we take for WED can be difficult to stop - for some. As I understand it, clonazepam may be one of the most difficult -about 50% have major difficulties and it can take over a year to stop. I am not sure of the percentage of people with withdrawal symptoms - even when tapering - from pregabalin.
Ann - Take what you need, leave the rest

Managing Your RLS

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badnights
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Re: Getting off Lyrica

Post by badnights »

There was some discussion on this board about augmentation -like symptoms when withdrawing from gabapentin and/or pregabalin. It was all anecdotal.

I had terrible withdrawals, consisting of drastically worsened WED, due either to stopping 1200-1800 mg gabapentin cold turkey or to switching from 150-180 mg codeine to 5-10 mg oxycodone, which is not an equivalent dose and might have led to some WED-like withdrawal symptoms. But, I did not have any nausea, so I doubt it was opioid withdrawal. It was just really severe and unrelenting WED for 3-4 weeks. I don't think I should have been taken off the gabapentin cold turkey.

I certainly haven't heard anything official about anti-convulsant withdrawal causing worsened WED, though.
Beth - Wishing you a restful sleep tonight
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Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Getting off Lyrica

Post by Orrel »

ViewsAskew: The 2014 Spring edition of NightWalkers mentions that oregabalin augments at a much
lower rate than pramipexole. An article in the New England Journal of Medicine (May 22, 2014)
is about a trial by R.P. Allen "Pregabalin versus pramipexole for Restless Leg Syndrome" It says that
augmentation for pramipexole at 0.5 mg was 7.7% and at 0.25 mg it was 5.8% compared with 300 mg.
pregabalin at 2.1%. See www.ncbi.nlm.nih.gov/pubmed. Just type in pregabalin in the search engine.

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

Re: Getting off Lyrica

Post by Orrel »

ViewsAskew: You were also wondering about using pregabalin to get off pramipexole. In the
Nightwalkers magazine (Fall 2014 p.8 bottom of left hand column), substituting a different
class of drug like pregabalin while the dopamine agonist is withdrawn is discussed. The article
admits that this may have its shortcomings (insufficient control of withdrawal symptoms)
and states that the opioid route is the best one to control withdrawal symptoms. Since
opioids are not (yet) an option for me, the pregabalin route is the only one I have. I wrote
Dr.B about this. He doesn't think I will be successful. Maybe I will have to go to a place
like Johns Hopkins(about 8 or 9 hours away) My GP said she would expedite this for me, if I
choose it.

ViewsAskew
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Re: Getting off Lyrica

Post by ViewsAskew »

Orrel - I have no quibble with using pregabalin - or ANY WED drug - to get off of another WED drug in normal circumstances. It often works. But true augmentation is a different thing. That's all I'm saying. We've talked about some doctors saying it works to use the patch in up to moderate cases of augmentation, but I haven't seen the research to back that up and have seen nothing about using non-opioids. I hope they publish about it and soon.

Thanks for the article. I read it and did more research....

Generally:
Clinical Management of Restless Legs Syndrome cites only dopamine agonists with two published research articles showing augmentation with tramadol. So far, I've not seen research published specifically that discusses that they found augmentation in one or more drugs (except as referenced above). The research by Allen et al is not about augmentation in pregabilin specifically (it's about a comparison to pramipexole) and doesn't address the fact that augmentation happened with pregablain and why, just states it did. This Early video (https://www.youtube.com/watch?v=670OqkhMjD4) only references DAs, too. It's from March, 2014, after the Allen article from February. Odd he wouldn't have referenced it, especially as they work together. The WED Foundation's document on augmentation (available to Foundation members) cites the exact same as above - dopamine agonists and tramadol.

Specifically in terms of the article:
In the Results section, the authors wrote, "Among the 235 patients receiving pregabalin (for 40 or 52 weeks), 5 (2.1%) had augmentation..." So, by that statement, we believe that they confirmed augmentation can occur with drugs other than DAs.

In the Discussion section, that comes AFTER the Results section, the authors wrote, "First, our findings suggest that RLS augmentation is an iatrogenic worsening related to dopaminergic medication, not a naturally occurring worsening or a worsening resulting from medical or behavioral factors." [emphasis mine] Later, they wrote, "On the other hand, RLS augmentation may be an iatrogenic effect of dopaminergic treatment..." Those statements lead us to believe that only DAs cause augmentation. But in their results, they mention it is associated with pregabalin.

In the Discussion section, WHY oh WHY was there not another point that said, in effect: We just proved augmentation happens in other drug classes, this is important news and we need to further study this. Also, why in the world would they say that their results show pregabalin causes it, but to shortly thereafter say that only DAs cause it?

http://www.nejm.org/doi/full/10.1056/NE ... Discussion

Everything I can find about pregabalin and augmentation is related to this one study and it's always the same quote. I am still confused and am no closer to understanding or and have no idea what to believe given the conflicting statements.
Ann - Take what you need, leave the rest

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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 Lyrica

Post by Orrel »

After being on pregabalin at 75 mg for four days I found myself this morning with "brain fog", feeling very spacey.
My wife went to the doctor this morning and during the course of the appointment mentioned this to her.
The doctor said I should not be driving and suggested that I switch to gabapentin. She said that I may not
necessarily have the foggy spacey feeling with it.. Does anyone have any opinions on this?
The purpose of pregabalin was (after a slow titration to 300 mg) to help me get off dopamine agonists
(pramipexole and Neupro). I know some don't think pregabalin would be helpful for this. Would gabapentin
be even less efficactious? With opioids not a possibility where I live, what other choices do I have? I sometimes
think that the hell of an augmented DA is not worse than trying to get off it and finding a good replacement.

ViewsAskew
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Re: Getting off Lyrica

Post by ViewsAskew »

You are in a tough place.

I can only see this through my past perspective. Like you, I was augmented. Like you, my doctor did not want to use opioids. I spent over 8 months trying various options, including seeing 4 different doctors. I tried on my own twice. I tried using 8-10 different drugs in different combinations. When I finally did stop, the worst was yet to come. Instead of going back to the mild WED I'd had (I was taking a DA for PLMS), once I stopped, my symptoms never reverted back to their prior level. I now had 24/7 symptoms.

The doctors say this can't happen. But, several of us here have had it happen. I have NO proof - but I think that continued augmentation is potentially a bad thing.

If I were you, I would do anything I could to get what I needed. I, paying out of pocket, fly to California to see Dr B every year now. I cannot find a doctor here that is capable of dealing with my case. After trying many times and failing, I just decided it better to just go to an expert. If you can afford that, it's what I would do. And, I'd do it soon.

From a perspective of what works, there is nothing that I know of in the research that would indicate that you will have any worse or better luck with gabapentin related to the augmentation. They work similarly. If you haven't watched it, by the way, watch the video upthread of Dr Early.
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: Getting off Lyrica

Post by ViewsAskew »

Orrel, by the way, to see a private message or PM, look to the top left of the screen, just below the WED Foundation's logo, next to User Control Panel. If you have a message, it will say, X new messages. Click on View your posts.

I get a notification when I first come to the site, too - a little pop up that tells me I have a message. And, I get an email. Not sure if that is because my account it set up that way or if we all get an email notification when we have a PM.
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.

Frunobulax
Posts: 431
Joined: Mon Jun 02, 2014 7:41 pm

Re: Getting off Lyrica

Post by Frunobulax »

Orrel wrote:After being on pregabalin at 75 mg for four days I found myself this morning with "brain fog", feeling very spacey.
My wife went to the doctor this morning and during the course of the appointment mentioned this to her.
The doctor said I should not be driving and suggested that I switch to gabapentin. She said that I may not
necessarily have the foggy spacey feeling with it.. Does anyone have any opinions on this?
The purpose of pregabalin was (after a slow titration to 300 mg) to help me get off dopamine agonists
(pramipexole and Neupro). I know some don't think pregabalin would be helpful for this. Would gabapentin
be even less efficactious? With opioids not a possibility where I live, what other choices do I have? I sometimes
think that the hell of an augmented DA is not worse than trying to get off it and finding a good replacement.


A better option than Gabapentin may be Horizant.

Pregabalin is supposed to work very much like Gabapentin, but takes less time to be effective - for Gabapentin it will take up to 6 weeks until it reaches the full effect. The side effects of both drugs are very similar. Pregabalin seems to be mentioned more often in the context of depressions and addiction, but it seems to work for a lot of patients, too. So basically, it takes longer for Gabapentin to work, while Pregabalin could have a higher rate of unwanted side effects.

Every patient is different, but I had a range of side effects when I started taking Gabapentin, including balance issues and some drowsiness - my blood pressure was down significantly. I would suggest to quit driving as long as your're adapting to Pregabalin.

Regards, F.

ViewsAskew
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Re: Getting off Lyrica

Post by ViewsAskew »

Whether gabapentin is better for you or not, Orrel, Frunobulax has an excellent point. Rarely do the medications work exactly the same - so you can likely expect something different from gabapentin. It may be worse, but it may be better. And, the other thing is that side effects often are there at the beginning, but go away with some perseverance,

And, in our world, that is often the only thing we can do - keep trying until we find the next right thing.

Another thought - once you have stopped the DAs, however that happens, you'll be able to try these drugs without the scepter of augmentation. The results could be dramatically different. I know they were for me.
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.

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