Max Dosage for Pregabalin

[67Waterman]

Dear All ... Is anyone here taking more than 300mg Pregabalin daily? I am taking 300mg in the evening and am finding that my RLS still wakes me in the night. I know the max dosage is 450mg but would be interested to know if anyone else is up to that level, and when they take this amount ... all at once or spread out, and if so, when. Big thanks, Sally

[Amrob]

I take 300mg of pregabalin nightly. I’m not inclined to take any more because I don’t want to increase the already significant side effects.

At a certain point in my monthly cycle, my sleep worsens (most likely the result of increased limb movements) and I find that 300mg of pregabalin doesn’t always cut it.

At that point I add in either 0.125mg or 0.25mg clonazepam and that helps.

Clonazepam has been shown to reduces periodic limb movements and being a benzodiazepine, helps with sleep maintenance.

If the side effects of pregabalin aren’t too bothersome for you then an option would be to increase the dose of pregabalin ever so slightly to see if it helps.

I can’t see that there’d be any real benefit in splitting the dose because you’re trying to increase the effectiveness of the medication and splitting the dose would mean that the period of coverage is greater but diluted in a sense. (The half-life of pregabalin is approx. 6 hours)

Others may have an opinion on this.

Otherwise, you could try adding in a small dose of clonazepam.

For me the key is keeping clonazepam at a very low dose otherwise daytime sedation/fatigue becomes an even greater problem. It also has a relatively long half-life meaning it stays in your system for longer.

[67Waterman in reply to Amrob]

Hi Amrob ... yes, similar .... I take the 300mg Pregabalin, but then rely on 0.125mg Requip / Ropirinole (yes yes, the naughty dopomine agonist one) to kill the final bits of RLS to allow me to sleep. I was just wondering if more Pregabalin would help and allow me to cut out Requip, but I think I am hoping for a miracle that does not exist. Thank you and Happy Halloween!

[Amrob in reply to 67Waterman]

Can you just keep taking the low dose of Requip? My understanding is that some specialists will prescribe a low-dose dopamine agonist to be used in conjuction with another medication. If the DA can be maintained at the low dose, then it's not as problematic as when DAs are used at a higher dose / relied on as a monotherapy.

It's only a real problem if you're experiencing augmentation on your current dose of Requip, or you're worried about potential long-term impacts of DAs on your dopamine receptors.

[Taz66]

I take 6 tablets n got 2 take them in the afternoon.

[Taz66 in reply to Taz66]

Also im still struggling on 6 tablets. Im going crazy as I also av peripheral neuropathy thats really bad.

[Butterflysun1 in reply to Taz66]

I have peripheral neuropathy & severe RLS too ( familial RLS as well ). What type is your neuropathy? I used to take Pregabalin but it stopped working & I didn’t want to increase as side effects not good already so very gradually stopped. Never taken a DA

I have 2 appointments arranged with the 2 different specialists later this month ( London ) so if you’re interested in the advice I get I can let you know. Might depend if we have same or different neuropathy - mine is called CIDP & damages myelin

[67Waterman in reply to Butterflysun1]

Hi Butterflysun1 (such a pretty name!). I only have RLS, nothing else. But thank you so much for the kind offer. Sally

[Butterflysun1 in reply to 67Waterman]

I think I meant the reply to go to Taz66 but it obviously didn’t!

Funny how we choose our user names isn’t it? I think I must have just looked outside & it was sunny with butterflies about - certainly doesn’t reflect me as such!

[martino]

I take 300mg at night and 300mg in the morning. My RLS and peripheral neuropathy are under control but I think the medication may have to be reduced.

[SueJohnson in reply to martino]

If you decide to reduce it, do so very slowly to avoid withdrawal effects other than an increase in your RLS

[Rayme]

I started on pregabalin in July and slowly went up by 25mg. Now on 400mg with almost no benefit. RL and insomnia almost unchanged. I sleep from 6am to 9am most days, retired luckily. But I can't bring myself to up the dose even a bit. Not many side effects except sleepy till midday and again suddenly tired around 3 or 4 am. Also, more concerning, is my eye sight has deteriorated. It was always very very good. So not sure what to do next and feel stuck at this point and annoyed about maybe coming off it too. All the best with your next step. This is such an amazing forum. I read it almost every night. It helps to share the difficulties and know what works and doesn't work for others.

[67Waterman in reply to Rayme]

Hi Rayme. I take mine at 6.00pm and go to bed at 10.00pm. There seems to be no right or wrong time to take it ... and like you, it doesn't really seem to help much. As you say, a strange syndrome x

[SueJohnson in reply to Rayme]

If you decide to reduce it, do so very slowly to avoid withdrawal effects other than an increase in your RLS

[SueJohnson in reply to Rayme]

If your vision is blurred, that is a side effect and you need to come off it.

[soupersuzy in reply to SueJohnson]

Hi Sue.....is it a big problem to have a bit of a problem with vision when on Pregabalin or would it correct itself if I came off it. Just wondering as sounds a bit scary.

[SueJohnson in reply to soupersuzy]

If it is blurry, yes I would come off it.

[soupersuzy in reply to SueJohnson]

Thank you

[Rayme]

Hi again Sally, I take my dose all at once around 10pm. This is my first time on prescription drugs for RRL. I've had RL from teenage years, from my mother. Managed fine for years on 4 hours deep sleep until a couple of years ago when I developed hip arthritis. This seemed to set off truly bad RL. I took cannabis edibles for 8 mths (from a very kind sister in law) but needed to increase quantaties over time! CBD oil didn't help at all. It sure is a strange syndrome! All the best.

[Joolsg]

Hi Sally,

I was on 25mg Oxycontin over 24 hours & 150mg pregabalin at night.

Like you, it never covered my RLS. I emailed Dr. Buchfuhrer and he replied quickly saying pregabalin often doesn't work well for those who have been o na dopamine agonist.

Maybe it would be better to add another low dose med, like clonazepam or an opioid? Often 2 meds at low dose are more effective than 1 med at high dose.

Or you could ask to switch to low dose opioid if you don't have any other conditions that preclude it.

[67Waterman in reply to Joolsg]

Hi lovely Joolsg - thank you so much for your advice. That is interesting about the fact that pregabalin often doesn't work well for those who have been on a dopamine agonist. I have only been on Pregabalin for three months (and another short 3 months of Gabapentin before that) (Ropinirole for around 15 years prior to that). I will give it to January, so the six month mark, and if nothing improves, I will definitely ensure my Doctor follows this methodology.

[Joolsg in reply to 67Waterman]

I wasted 5 years on Oxycontin and pregabalin. I still had severe RLS and was up 2 or 3 times a night walking around

Prof. Chaudhuri said that was the best I could expect. Dr. Buchfuhrer was shocked and felt I should push for better treatment

Shumbah was on exactly the same drugs as me and still suffering severe RLS. She switched to Buprenorphine and it completely stopped her RLS. Prof Chaudhuri initially refused but I pushed and he eventually sent an email saying he 'had no objections if GP agreed'. Annoying as he knows most GPs will not take the risk to prescribe an unlicensed drug. Luckily GP agreed to a 3 week trial. Miraculous! Zero RLS and 8 hour's sleep every night since last July 2021.

[67Waterman in reply to Joolsg]

Joolsg ... I know that somewhere in this great Chat Forum, you have specified your exact dosages of exactly what you are taking and when, but would you be so kind as to do it again for me? Big thanks, Sally

[Joolsg in reply to 67Waterman]

I take 0.2mg at 10pm and 0.2mg at midnight. It stops all RLS. At first I had severe nausea but took medical cannabis for a week and it stopped the nausea. I also get opioid induced anxiety/panic attacks and whenever they flare up, 25mg pregabalin in the evening ( around 3am when I wake for a loo break) sorts it completely.

[collageartist52 in reply to Joolsg]

how does a person contact this dr you mention above? thanks!

[RalphWiggam]

For what it's worth- via Dr. Buchfuhrer for my serve RLS I'm taking Pregabalin along with Belbuca and it's been life changing for the good. Other opioids didn't work very long or caused side effects that were debilitating (nausea & anxiety-both very common). Belbuca was made a major difference but I still needed some additional. Rather than increase Belbuca we went with a combo as describe. I take the Pregabalin 75mg at dinner, 150 at bedtime along with 300mcg of Belbuca. In the morning I take 75mcg Belbuca + 75mg of Pregabaline late morning (I get RLS in my arms during the day if I don't take the morning meds).

I'm thankful to have found a combo that works. As most have stated, this disease is horrific and very hard to control. One treatment plan doesn't fit all or most patients at this level of RLS. It's an art to find the right treatment. I had great RLS relief with low dose Methadone but the anxiety was terrible so Dr. B had me switch until I ended up where I am now.

I wish you the best with your healing. I recommend Dr. B or Dr. Stephen Poceta at Scripps in San Diego. Dr. B has the most experience with treating RLS but his office is terrible. Scripps has a great office team and Dr. Poceta is good but his knowledge is a bit behind Dr. B.

[67Waterman]

Thank you Ralph. I live in London (although would gladly swap with San Diego!). But I have taken note of the Belbuca option. Wishing you a great sunny day. Warm regards, Sally

[Nikos64]

I was on 300mg of pregabalin.

Stopped the RLS but I couldn’t wake up in the morning. Gained 12.5 kg. Slept like a rock though

[LanaCSR in reply to Nikos64]

Pregabalin caused tremendous weight gain super fast (within 2 weeks) in me. I blew up like a balloon from the swelling, especially in my lower legs and feet. So I wasn't able to continue taking it. That is a common side effect.

[LFIT in reply to LanaCSR]

sorry to hear that - what dosage did the swelling side effect kick in at ? Hope you have an better meds option since pregabalin . I’m presently on 125mg pregabalin and side fx are calm - just a mental numbness of a kind - don’t get highs or lows!

[LanaCSR in reply to LFIT]

Good morning! Yeah, it was a few years ago when I tried pregabalin. I finally found a combination that works well for me. But pregabalin definitely is not for me...lol. I wish you the best!!

[soupersuzy in reply to LanaCSR]

Hi Lana I just read your post about Pregabalin and weight gain. I've been on Pregabalin for about 6 months and have gained quite a lot of weight without much relief. Was wondering if the weight gain would reverse if I came off it. Did it for you?

[LanaCSR in reply to soupersuzy]

Hey there! Oh, yes, the weight absolutely came off as soon as I stopped taking the pregabalin. Although it was an all-over weight gain, it seemed to be mostly concentrated in the feet and legs, as if it was like I was bloated and the pregabalin was causing edema. It was frustrating because it was working well for my RLS but then quit working. So I realized, especially with the weight gain, that it just wasn't going to work for me and I needed to try something else. Good luck with yours! I hope you find what works best for you, too!! 🤗

[soupersuzy in reply to LanaCSR]

Thanks for replying. I'm thinking I will give up Pregabalin as side effects really aren't worth the tiny bit of relief. I'm on 250mg now and don't want to go any higher with the dosage. Hopefully my weight will come off. It's not totally in my feet and legs although they are noticeably swollen, I just find I want to eat all the time! Best wishes.

[LanaCSR in reply to soupersuzy]

I think you will find the weight come off once you stop taking the pregabalin. 🤞

[soupersuzy in reply to LanaCSR]

Fingers crossed

[67Waterman in reply to LanaCSR]

What did you take instead of Pregabalin? With thanks!

[LanaCSR in reply to 67Waterman]

I am now on three meds. I'm not crazy about being on three different meds, but it takes this combination to control my RLS. So it's worth it, in my opinion. I now take buprenorphine, Horizant, and dipyridamole.

[Toast5577]

I take 500mg of pregabalin at bedtime along with 5 mg methadone. It works really well for me and I rarely have any RLS. If I drink alcohol or don’t exercise I might get mild RLS.

There are some side effects of the pregabalin. It takes me longer to wake up in the morning and I have gained some weight. I have to closely monitor my diet to prevent constipation from the methadone.

All of this is worth it to me. My RLS can be so bad that I get zero sleep. That is not compatible with life so these medications are literally life savers.

[67Waterman in reply to Toast5577]

Hi Toast5577. Thank you for your posting. Can I ask how long you have been on the Pregabalin? I started off about 3 months ago on 300mg and in the beginning, it was really effective ... but now it seems to have no effect at all. Thank you so much.

[LanaCSR in reply to 67Waterman]

That happened to me, too, for the brief time I took pregabalin. It worked great for about a week and then almost immediately quit working. So frustrating!

[Toast5577 in reply to 67Waterman]

I have been on it for about 2 years. I started on a lower dose but it wasn’t enough for me. I also had to add the methadone. I have intractable RLS which is harder to treat. Many members of my family have had RLS too.

I think that each person has to experiment (with guidance from a good MD) to find what works for them. I wish you the best of luck!

[jilk]

From my scorces of information pregabalin knocks down glutamate .check out how you can do this .also with diet look at herb valerian; taurine ,magnesium, vit b6 all do the same thing. hope this is helpful it helped me . aah, the stillness of legs when drifting off to sleep is just beautiful, may you enjoy it soon also

[67Waterman in reply to jilk]

HI Jilk ...thank you for your message. Do you take all of the supplements that you list? With thanks, Sally

[jilk in reply to 67Waterman]

sally i am still refining my diet because i stupidly think i can manipulate tea or coffee into diet however i have had a few night running every week with only the "nature own compete sleep advanced ." my theory was glutamate in am as it is an excellerator and work down to gaba towards evening, [g.a.b.a is what calms the cells or the brakes if you like] this needs refining to no high glutamate. at all i still think the taurine helps but tweaking diet to personal tolerances helped me the most. e.g. no starchy. food. hope this was helpful delma