Pregabalin

[BLUES60]

I am taking pregabalin, can you augment on this drug as I seem to have got worse, I went up to 400mg but didn't work, so came down now to 100mg, gradually now I am only sleeping 2 hours a night been on the drug for about 2 years, seem to be in between a rock and a hard place increase dosage or come off completely and try something else, any advise would be appreciated

[Joolsg]

I’m including a link to a 2014 study comparing pregabalin to pramipexole which does state that people augmented on pregabalin. Also, Alison7 was on pregabalin for many years for pain and it helped her RLS but she reported a worsening of symptoms and came off it.

I was on 150mg pregabalin from feb 2017 to 2020 & I noticed I was getting RLS in my left arm and shoulder. I decided to reduce as I’m on 25mg OxyContin and was only taking the pregabalin to counter severe panic attacks caused by the OxyContin.

I spent over 9 months reducing very slowly and I’m just off it completely. My RLS hasn’t worsened but I want to see if the RLS in my arms disappears.

It’s not as bad as it was so fingers crossed.

nejm.org/doi/full/10.1056/n...

[Hidden]

Hi, I'm that Alison 7, and yes, I believe you can augment. It's not necessarily the same mechanism as the augmentation on eg Pramipexole and it can be hard to know if the worsening is natural progression or augmentation but there is no doubt that Pregabalin worked for me then stopped working and I needed to increase the dose which then stopped working too. Coming off it was awful as it was even worse then and I eventually did it very gradually over many weeks and the last wee bit was the hardest. I tried it again not that long ago and it didn't work at all, just made me sleepy for a couple of weeks and then that wore off too.

I believe it has made me permanently worse. I have truly awful RLS and wake frequently during the night with it. I take nothing just now. I am on no tabs which might make it worse. I do think there is an element related to food eg sugar and some additives.

I think there needs to be a warning about it. It seemed such a wonder drug at first. I am now wary of taking anything at all - though it appears that eg Buprenorphine is good for many if you can get it prescribed. I haven't yet dared to ask.

That is my opinion from my experience anyway. Not what folk want to hear but that's what I believe.

I have a peripheral neuropathy as well. Whether that makes any difference I don't know.

[BLUES60 in reply to Hidden]

Thank you, very helpful, confirms what I suspected I am augmenting, not as bad as prami but still bad, will try to come off them completely, no drug is a good drug

[Hidden in reply to Hidden]

Hi Alison, when you say your rls was worse coming off pregabalin, do you mean that lowering the dose worsened things or that you weren't getting sufficient coverage from the lowered dose? I have PLMD and I'm trying to reduce pregabalin. I have been on 300mg for several years, have recently dropped to 275mg but when I tried 250mg, I woke up tired (as though that amount wasn't sufficient). This has been my experience when trying to reduce dose on several occasions. I'm wondering now whether there may be a period of adjustment or I just need the higher dose.

[Hidden in reply to Hidden]

I’ll try to explain. At 1st Pregabalin was an unexpected miracle. Took for pain when neuropathy started years ago when not known to help RLS & at 50mg & I reported to drug co how effective was. Effect lasted around 2 yrs then stopped being any good. Same occurred at 75mg, then 100mg, 125, 150mg, can’t remember how long each dose was good for. 150 also stopped working, was worse than when I started on 50 & side effects of poor balance & suddenly getting very hungry & shaky meant didn’t want to increase further so started reducing. Side effects stopped but each small reduction of 25mg resulted in worse RLS flare up which gradually settled. Took it very slowly over weeks. The last reductions from 75 & especially 50 & 25 were the worst. Eventually off but RLS remained worse than ever was before started Pregabalin.

This could be because naturally worsened over time but I harbour a feeling that Pregabalin reset it somehow & it has never gone back to previous level which in retrospect wasn’t that bad. It still fulfilled criteria for severe RLS but not a patch on severity now.

[Hidden in reply to Hidden]

Thanks for sharing your experience Alison.

[Sampsie]

I found Pregabalin to really help my RLS, but I was only on it for a month or two as my hair fell out so I came off it. It's so hard trying to find a drug that is right for you, and to balance the inevitable side effects with the benefits. Would it worth trying Gabapentin if you cannot get an opiod? I was on that before Pregabalin and had a different experience even though they are similar drugs. Perhaps it might be better for you?

All the best.

[Hidden in reply to Sampsie]

Thank you. I’m basically scared to take anything now for fear of giving myself worse problems than I already have. Every night, despite already having had at least one episode while sitting on the couch, when I get it to wear off I then believe I’ll sleep - and eventually after several baths & doing puzzles I think the morning isn’t far away! It’s a real b....r isn’t it?!

[jademarie29]

have u tried taking 300mg of pregabalin to see if that works ??

[Sampsie]

I can totally understand why you're scared. I'm like that with food, drink, anything I put on my skin and medicine. And it's a vicious circle, because the anxiety about having it makes it worse. I feel for you. I hope you find a solution.

[joebeddall]

I took pregabalin for 2yrs,various doses,it stopped giving me feet comfort. and started giving me side effects.I am now trying out Duloxetine Mylan After 2wks.there is a little comfort.Time will tell.

[Esme2007]

Hi I have been on Pregabalin for about 8 weeks now . I reluctantly took this medication after years of suffering and my RLS worsening whilst taking new medication for breast cancer . I take 50 mg early evening and 100 mg before I want to sleep. So far so good although I absolutely hate putting this drug into my body . I’m extremely tired in the morning and disorientated. I hate feeling this way but not as much as the awful RLS and no sleep and I augmented in the summer ( before taking pregabalin) and I dread going through that again . I’m certainly not thinking that everything is fine - I have the occasional feeling of RLS but just being able to sleep has been amazing . I had a bowel obstruction 3 nights ago and had to go by ambulance to hospital. I had morphine only 1 dose of 7.5 mg . I was discharged home and spent the whole day snoring in a wonderful sleep that is not experienced for months on end . Then I went to bed and slept all night . It was so lovely to feel so refreshed the next day. As I have said before this little #*>}+¥~ called RLS completely disappears when I have anything else wrong with me .

I just take one night at a time . I know that felling of doing puzzles to destract and hoping the morning comes soon . I send a big hug to all of you suffering out there ,and being the extremely unfortunate individuals to get this horrible condition. Thank goodness god this forum . ♥️