Pregabalin??? : What's anyone's... - Restless Legs Syn...

Restless Legs Syndrome

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Pregabalin???

dickJones profile image
23 Replies

What's anyone's experience of Pregabalin? I have a tempting set of tablets looking up at me here, but the listed common side effects are horrific!

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dickJones profile image
dickJones
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23 Replies

Hello!

I'm still trying to figure out if Pregabalin is benefiting me or not. I have depression and am a little suspicious that Pregabalin is worsening it a bit.

Medications can be so difficult, so please don't do anything without your doctor's advice.

silkyreg profile image
silkyreg

It made me very aggressive and I stopped to take it. Pramipexol works best for me.

gobojo profile image
gobojo

I've been taking it for a while. I don't like it, but I like what its done for my restless legs. I have put on weight, about half a stone in a year and about 2hrs after I've taken it in the evening I start to feel quite weird - sort of stoned, dizzy and like I have to go to sleep. Its not nice. However, although I sometimes get woken up with jerking legs, I generally sleep through the night and I can sit comfortably in the evening. I guess there's no medicine that doesn't have side effects and at least there doesn't seem to be a problem with augmentation. Its bound to be addictive though.

Heatherlss profile image
Heatherlss in reply to gobojo

Did you ever take DAs before ?

dickJones profile image
dickJones

Thanks, folks. I'll save it for times of desperation, I think!

Pam34 profile image
Pam34

Hi

I’ve been on Pregabalin for 18 months and on the whole am really pleased. I take 150mg at 8pm and would say I get about 80% coverage. Some nights I get a breakthrough but i wander round and find something to eat (😬) and am back in bed after 5 minutes. There were a few side effects when I started but I’m glad I persevered, they settled down and I have my life back. I’ll take that for now!

Pam

dickJones profile image
dickJones in reply to Pam34

Thanks, Pam. Food for thought!

grandpianoman profile image
grandpianoman

Have never tried; gabapentin side effects were so bad for me that I didn't want to try pregabalin.

borasha profile image
borasha

I had to stop taking Pregabalin. I had visual problems in that I could no longer read small print but, more worryingly I began to have to have breathing difficulties.

MumofSam profile image
MumofSam

Hi Dick

I’ve been taking Pregabalin (again) for the last couple of months. I didn’t want to start taking RLS meds again, but with 8 months’ med-free and my RLS symptoms worse than they’d ever been and sheer hell at times, with no improvement, I had to concede defeat last February.

I’m on 2 x 50 mg a day. At first I felt really tired but I think that’s mostly gone now. It’s really helped with the RLS, although symptoms do creep through at times as this is quite a low dose I guess. The insomnia is has since going med-free is also gone.

So, other than initial tiredness, no other side-effects I’m aware of, nor did I get any before.

LotteM profile image
LotteM in reply to MumofSam

Hi mumofsam, may I ask why you take the pregabalin twice daily? Instead of only once (in the evening).

MumofSam profile image
MumofSam in reply to LotteM

Hi Lotte

That’s how it was prescribed. However, I take the first one at around 5pm and the second one before bed. I’ve suppose I could take them both together but is a single 100 mg dose not too high?

LotteM profile image
LotteM in reply to MumofSam

Hi mumofsam, no 100mg is not too high. As I am currently trying to convert from oxycodon slow release to pregabalin, I looked up the studies on pregabalin for RLS. I am a scientist and can access the scientific literature and read and understand it. There are only four papers, and I suspect two underlying studies. No very many. One was a dose-range study (Allen et al 2010), with daily doses ranging from 50mg up to I think 300mg. The other study/studies used all 300mg. However, the results with 50mg were only slightly less good than those with 100 or 150mg. And more than than did not improve things further. I was interested in te lowest effective dose, as for me often doses lower than the average are already effective. I started out ((last week) on 25mg. This dose-range study also showed that it took 2-3 weeks for the pregabalin to become effective; effectiveness increased up until 20weeks, but only slightly.

As ever, we are all different, and you'll have to find out for yourself what is your lowest effective dose and what is the optimal timing of taking the med. Trial and error!

LotteM profile image
LotteM in reply to MumofSam

Hi mumofsam, I didn't respond to your taking the pregabalin in two bits. It seems wise to take it only towards the end of the day, especially if you don't have daytime symptoms, which usually only occur during augmentation. If this works for you, don't change it!

MumofSam profile image
MumofSam in reply to LotteM

Hi Lotte, I would definitely say 2 x 50 mg a day is my minimum dose. I would be loath to increase it as once you’re on RLS meds it’s hell trying to wean yourself off them if you need or want to. I also suspect that being on Pregabalin for about 2.5 years and Tramadol for about 3 years (concurrently for my aforementioned spinal problems) has somehow changed my brain chemistry. My RLS symptoms were relatively mild and only for a few days a month for years and years, before I started taking them. During and after the weaning off period last year I discovered I now had RLS in my left arm, neck and base of my spine. Also it’s now mainly in my left leg and rarely in my right, whereas I only used to get it in both my legs.

Hope that helps your research.

LotteM profile image
LotteM in reply to MumofSam

No fun about the increased symptoms. i don't know about altered brain chemistry, but that is surely not impossible. Furthermore, RLS IS not only a chronic, but also progressive disease, meaning it gets worse over the years. Unfortunately. No growing out of (🤔is that English?)

MumofSam profile image
MumofSam in reply to LotteM

Hi Lotte, there’s a doctor on here who also suspects the same thing has happened to her. I’ve had RLS all my life and, unlike what happens typically, it was worse when I was younger, but finally settled to a few days a month when I got into my 30s, perhaps earlier. I had none of the other problems that started when I was weaning off Tramadol and Pregabalin before that point and, despite taking no meds, they continued and still do now. When I was on Tramadol alone, if I cut the dose down my legs went through the roof but no RLS anywhere else.

So, I believe something has been changed in my brain chemistry, as nothing else, to me, explains the spreading of the symptoms. I know RLS typically gets worse with age, but for me it had done the opposite and it’s funny that the deterioration just happens to coincide with a period of having been on high doses of RLS meds.

dickJones profile image
dickJones in reply to MumofSam

Thanks, MumofSam.

Amrob profile image
Amrob

Hi Dick, I have been taking Lyrica (pregabalin) for approximately 6 years. I take 300 mg nightly. It does have undesirable side effects such as a constant spaced-out feeling and a feeling of disconnectedness. I also experience reduced cognitive functioning and some daytime lethargy. Having said that, I would choose Lyrica any day over the debilitating tiredness I experience when not medicated.

In sum, Lyrica is the lesser of two evils!

LotteM profile image
LotteM in reply to Amrob

Hi Amrob, have you tried lowering your dose? As pregabalin/Lyrica comes also in units of 25mg, reduction should be possible in small steps. In that way you'll be able to find your minimum effective dose. If that probes lower than your current dose, the side effect may also be less or less severe. In a dose-ranging study by Allen et al (2010) dose from 50mg and up proved effective. They didn't analyse whether higher doses were significantly more effective than lower doses, but looking at the graphs (I did), I suspect they weren't. Anyway, it is worth trying, not much to lose apart from a few nights with increased restlessness. If you go this route, make sure you give your symptoms time to settle after every dose reduction, for a week or so.

Amrob profile image
Amrob in reply to LotteM

Thanks Lotte, I was very interested to read what you wrote about effective dosing.

I have attempted to reduce my pregabalin dose on several occasions however find that 300mg seems to be the dose that works consistently (despite the significant side effects).

(I have severe periodic limb movement disorder with occasional RLS. I'm not sure whether the distinction is important in this context).

I had an iron infusion earlier this year and following that was able to reduce the dose to about 250mg for approx. 2 months however that effect didn't last.

I have an appointment next week with my sleep specialist and am going to request a script for buprenorphine.

Failing that, I might trial a reduced dose of pregabalin yet again.

Thanks again.

LotteM profile image
LotteM in reply to Amrob

Sounds good Amrob. Maybe you should get another iron panel to assess your blood iron status now. You want to exclude that you're 'losing' iron.

Edit: I just read in one of your responses to other posts that you use 200mg pills. Thanks.

Amrob profile image
Amrob in reply to LotteM

I do lose iron however am assured that the degree to which this happens is usual in a pre-menopausal woman. I have also been tested for the major conditions associated with iron loss.

Low ferritin is common among women in my sizeable family however interestingly I am the only one with PLMD/RLS.

I have used different doses of pregabalin over the past five or so years however find that 300mg is the dose that provides consistently good results.

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