Pregabalin

[Firenze1]

I've been getting on really well with Pregabalin for some months now but lately it's been a bit hit and miss and the old familiar feelings are starting to creep back - literally. What's the maximum dose I can take please? And what happens when it's just not helping any more??

[SueJohnson]

450 is considered the maximum dose but you can take up to 600 mg. Try increasing by 25 mg. If it is not helping after increasing then something else is going on as it shouldn't stop helping.

[Joolsg]

Max recommended dose is 450mg but some patients do take up to 600mg.If it has completely covered RLS until now, maybe something else has triggered the sudden worsening.

So ask for full iron panel bloods and check B12 and Vit D levels.

If they're above the recommended RLS levels you can try increasing pregabalin.

If it doesn't help or stops working you may then need to switch to low dose opioids.

[amrob123]

I experienced this over two or three years until I arrived at a dose of 300mg. That dose meant I slept okay approx 80% of the time, however I wasn't prepared to go any higher because of the side effects. I take it mainly for PLMD.

[Firenze1]

Thanks for your replies. I will try increasing the dose initially. I'll request some blood tests too. Is it safe to take codeine together with the pregabalin as I have some of those to hand.

It's so helpful and reassuring being on here because you totally get it! I'm so grateful for all the support

[SueJohnson in reply to Firenze1]

It should be fine unless you experience breathlessness on gabapentin.

[Firenze1 in reply to SueJohnson]

Thanks, that's good to know

[RLSAndy in reply to Firenze1]

I dont know about safe as id never advice anyone to take anything not prescribed, although i opted to and take 2 x 30mg codeine most nights as im coming off ropinirole. Im taking them with 450mg pregabalin but take one 30mg codeine with 150 pregabalin sometimes 60mg. I dont like taking opioids but needs must atm and i researched it and made the choice id be safe, o do get low heart rate alerts which may be from the codeine but also could be from the ropinrole. Time will tell as i should be clean off it within a month.

[amrob123 in reply to Firenze1]

When taking approx 250mg pregabalin, i added in a very low dose of codeine and experienced markedly slower breathing. It was quite disconcerting so i didn't persist with it. I don't have respiratory issues generally.

[Flora-Rose]

I take 450mg of pregabolin daily and am pretty clear of RLS on that. Alcohol is my major trigger, so generally don’t drink!

[Firenze1 in reply to Flora-Rose]

Thanks, I feel I have some leeway yet and can increase dose gradually and see if that helps. Alcohol is sometimes a trigger but not always

[Baz33]

I've just gone through a 4 month withdrawal programme from 300mg pregablin, it's very important you don't just stop.this ......

[Firenze1 in reply to Baz33]

But what will you take instead?

[Baz33 in reply to Firenze1]

I've been moved onto the smallest does of benzodiazapam but as this is another controlled substance I'm reluctant to use it.It's taken 24 weeks of withdrawal from 300mg of pregablin, I wasn't made aware of the side effects of withdrawal (which for me have been awful ( so I don't want to begin again.

I'll try the iron at night and have to serious consider how much I can cope with and which is the better of 2 evils .....

[amrob123 in reply to Baz33]

Well done for withdrawing slowly. People tend to grossly underestimate how bad the withdrawal symptoms from pregabalin can be. Hopefully things have levelled out for you now.

[Rls29 in reply to amrob123]

I went through hell coming off Pregabalin. Never felt so ill in my life. It really messed with my head. It was commented to me by a clinician that the withdrawal from Pregabalin is similar to coming off Heroin!!!! No wonder I felt so ill.

[SueJohnson in reply to Baz33]

I am so sorry you had a bad withdrawal in spite of doing it correctly. Usually that would have avoided it.

[amrob123 in reply to SueJohnson]

Baz33 did it slowly, but still faster than the recommended protocol of reducing by 10% of the dose per month, eg from 300mg it would look like: month #1, 270mg, month #2 247mg and so on. Following that protocol would take more than a year.

[Suesh]

I am also on Pregabalin but can’t have any alcohol or antihistamines - does that help?

[Islay9]

I take 450mg of Pregabalin but also one x 30mg dihydrocodeine at bedtime. It switches my legs off initially and the PG gets me through the night more or less.

I also have started with iron again. Anything under 30 is considered low (ferritin) but you’re looking to get it to at least 100 if not more.

[Theonlypetied]

I recently reduced my Pregab dose from 350 to 300 as I stopped taking 2 meds known to exacerbate the problem and my own GP has always been concerned at the ‘high’ dose. I also seem to get ‘cycles’ of side effects that last a few weeks and then change. It’s very bizarre. The Pregab treats my RLS but not my PLMD which is frustrating. I still take some meds that are known to exacerbate RLS/PLMD but any of the Drs I see at my surgery are reluctant to change them for alternatives. Bummer!

[Firenze1 in reply to Theonlypetied]

It seems we all have different stories and different outcomes. My RLS is more an evening issue so once it's under control it doesn't affect my nights, thank goodness. Before Pregabalin it could happen at any time so I'm grateful to be able to go to the cinema and such now. Hopefully if I find the correct dose for me I'll get my evenings back again

[amrob123 in reply to Theonlypetied]

Can I ask how you know the pregabalin isn't addressing your PLMD?

[Theonlypetied]

Because sometimes it wakes me up but mainly because my wife reports seeing my legs move when she’s not alseep. She says it’s about every 9 seconds and can range from a small ‘shuffle’ to my legs flying up like I’m exercising or playing football. We’ve had to buy two single beds as she can’t cope with the ‘earthquakes’

[SueJohnson in reply to Theonlypetied]

My second laugh for the day although it's not a laughing matter for you nor your wife "can’t cope with the ‘earthquakes." 🤣🤣🤣

[Theonlypetied in reply to SueJohnson]

You’re welcome!

[amrob123 in reply to Theonlypetied]

I see, thanks. I do wonder as my young son takes gabapentin and he still has pronounced periodic limb movements at night. I keep his dose as low as possible but it's still supposed to be an effective dose. Most of the time he is refreshed on waking, but not always.