Lyrica 300+

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wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

Lyrica 300+

Post by wantok »

I have had success with Lyrica for my PLMD for the last six months, although, of course, I have had to put up with daytime sedation. AND it has been necessary to increase the dose around every 5 days by 25 mg. in order to have my sleep maintained (I also suffer from sleep onset and maintenance issues). My general doctor said 300 mg is maximum dose; my neurologist said dosage is only limited by side effect tolerance implying I can go much higher. I am concerned because of the horror stories I have heard about higher dosages of this and that likely leaves me a few more days before I would have to increase. All comments appreciated.

badnights
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Re: Lyrica 300+

Post by badnights »

You could go higher, but with the continual need for dose increases and the impractical side effect of daytime sedation, maybe you'd be better off having access to a different class of medication that you could alternate with the Lyrica to keep the doses low. Opioids would seem to be the obvious option. Have you ever tried one, would you want to, would your doctor be open to it? Have you tried any dopaminergic meds?
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.

wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

Re: Lyrica 300+

Post by wantok »

I haven't tried the dopaminergic drugs for fear of augmentation. I have tried a lot of the opioids. Most made me nervous or depressed (methadone). There are a few I haven't tried and others I didn't give a fare try, but overall the experimentation was one of the worst periods of my life. Thinking of lamotrigine next maybe.

wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

Re: Lyrica 300+

Post by wantok »

Question which I should send to the whole list: is it the case that you can avoid augmentation if you stay on a dose that works until it doesn't and then, rather than increasing if it fails to work, just get off of it?

Rustsmith
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Re: Lyrica 300+

Post by Rustsmith »

Avoiding augmentation can be very challenging, but you can certainly delay its occurrence. Some (lucky) people manage to take DAs for 15 to 20 yrs. The trick is to get your ferritin level over 100 and keep it there and to take the lowest dose that covers about 95% of your symptoms. Taking occasional holidays should also help, but you will need another med to help you through the withdrawal period and during the holiday period. The severity and length of the withdrawal would probably depend upon a number of factors, including how long you were taking it, the dose and your own reactions to both the DA and the absence of it.
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: Lyrica 300+

Post by ViewsAskew »

I augmented in about a week - ferritin was under 20 at the time. Fast forward several years after I augmented and I had tolerance to opioids. Had to find a way to manage, so started taking a bit of the DAs now and then to keep the opioid doses lower. Over the years, I've had 3 infusions and lots of ways to try and keep the opioid dose low.

My ferritin is usually over 200 these days. I have taken DAs as 6 months without any augmentation, now. I haven't pushed it past that, yet, but I keep the DA dose low, stop it for a couple weeks every 6 months, and also keep the opioid dose at less than half of what I needed when I only took an opioid.

It totally worth trying. Not saying it's not without issues....but when you are limited, DAs absolutely can work well.
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.

legsbestill
Posts: 551
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Lyrica 300+

Post by legsbestill »

Presumably you have tried iron therapy - or are not suitable for it?
Prior to looking at d/as I would be sure to check out EVERY other treatment first because often it seems to turn out that the people who fare least well on new treatment suggestions are those who previously augmented on a d/a.
In the small study on dipyridamole, none of the participants had previously taken a d/a and I sometimes wonder would it have been more effective for me if I had not previously augmented on a d/a.
I recently had an iron infusion and - so far - no improvement. It is early days yet but, again, I note that it iron tends to be less effective for those who previously augmented on a d/a.
Pregabalin/gabapentin (which don't work for me) are considered to be less effective for those who previously augmented on a d/a.
Having said all that, I did reintroduce a small dose of pramipexole (0.088mg which in US measurements is 0.125mg) over a year ago after withdrawing from a huge dose in 2016 when augmentation set in after 10 years of gradually increasing daily amounts. So far I don't think I have augmented. I am planning to take a break next month in hope of resetting my sensitivity to it. Nothing else works so well for me.

wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

Re: Lyrica 300+

Post by wantok »

Yes, I get iron infusions several times a year; my ferretin is kept way above 100. Never seemed to help much although it seems worse without it, if that makes sense.

badnights
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Re: Lyrica 300+

Post by badnights »

wantok wrote:
Mon Aug 31, 2020 11:03 pm
Yes, I get iron infusions several times a year; my ferretin is kept way above 100. Never seemed to help much although it seems worse without it, if that makes sense.
:lol: :lol: Sure it makes sense. It means it's actually helping, but doesn't seem very dramatic.
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.

badnights
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Location: Northwest Territories, Canada

Re: Lyrica 300+

Post by badnights »

wantok wrote:
Wed Aug 26, 2020 2:06 pm
Question which I should send to the whole list: is it the case that you can avoid augmentation if you stay on a dose that works until it doesn't and then, rather than increasing if it fails to work, just get off of it?
There is a member here who does just that. I forget her username. She has been managing for years on a DA alone. She can detect when the augmentation is starting. That's when she stops and gives herself a break from it - - I think 10 days but I could be wrong. Then she starts right up again. It works for her. I don't know how she deals with symptoms during the break - iirc she toughs it out, maybe she doesn't work, or maybe I just don't remember correctly.
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.

Stainless
Posts: 176
Joined: Tue Dec 01, 2015 9:30 pm

Re: Lyrica 300+

Post by Stainless »

I take 150 mg about 7pm then 150 mg +2 mg clonazepam at bedtime. The goal is to get to sleep quickly. Makes RLS bearable barely. Good weeks followed by bad weeks with no apparent trigger. I have not asked about increasing dosage only because I'm running out of options. Best of Luck Wontok

My neurologist prescribes brand name Lyrica. I need to ask why since there is a generic. Anyone have experience with that?

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