Help please.

[Mulberry100]

I have recently changed from 1200 Gabapentin to 250 Pregabalin and am sure I have read on this site that I can take all 250 at the same time, ie two hours before bedtime, not that I have ever had a bed time in the last35 years! My GP and the pharmacist say they should be split into 3 doses, could anyone with experience of Pregabalin please advise me, I would be most grateful.

[SueJohnson]

No. You do not have to split pregabalin. That is the advantage of it over gabapentin. I notice though that you switched to 250 mg pregabalin and that is the equivalent of 1500 mg gabapentin. Why such a big jump? 200 mg pregabalin would be the equivalent of 1200 gabapentin and 225 mg the equivalent of 1350 mg,

[Mulberry100 in reply to SueJohnson]

Thank you for your reply. I was on 1200 Gabapentin but it had stopped working for me and I had the option of increasing the Gabapentin or changing to Pregabalin. The GP said that as 1200 wasn’t working she would prescribe 1500 and the equivalent Pregabalin would be 250. I did start with 200 split at 7 and9pm, with the option to increase. The 200 gave me relief quite quickly but didn’t last through the night and, in fact, the restless legs were as bad as the point I had got to with the Gabapentin. I was going to increase the dose this evening, but wanted to check if it was ok to take as one dose. Hope that makes sense.

[SueJohnson in reply to Mulberry100]

Why not try 225 mg. It comes in a 25 mg size. If you find the 250 works for you tonight ask for the 25 mg size and try going back to 225. You want to take as little as needed.

[Mulberry100 in reply to SueJohnson]

Ahh, I forgot to say that I have them in 25mg, so I could definitely try 225. Do you think I should try and persevere with 200 in the hope that it builds up? I really feel this is my last hope as I have tried pretty much everything else. Thanks for your help.

[SueJohnson in reply to Mulberry100]

No - if 1200 gabapentin didn't work, the 200 pregabalin won't work. I would try 225 since you have them.

[Mulberry100 in reply to SueJohnson]

Will do, thank you.

[dickJones]

I was on 450 of Pregabalin and I took it in one dose on going to bed. No problems for me, but we all differ in what is effective and what we can tolerate.

[Mulberry100 in reply to dickJones]

Thanks for your reply. I have an open mind as to how and when to take the Pregabalin. Reading through many posts on here it seems that the best results for RLS are to are in one go, which is what I am doing at the moment with much easier evenings, even though I take at 9.30pm, and not so great after 1am. To be fair, I haven’t given it long enough to take effect.

[Hidden]

Hi Mulberry100, I am at exactly the same point as you were recently. I am at Gabapentin, thinking about Pregabalin if a higher dose of Gaba does not help me.

The average level for users of Gaba is 1.400-1.800 mg. You were still under the average of good working Gaba when you changed to Pregab. Maybe you stopped too early.

So far am convinced that your GP and pharmacist are right: you have tot split up doses with both Gaba and Pregab during day and night. That is logical: After 6 hours (T 1/2) both half your dose has already disappeared from your blood. That’s why Horizant exists in the US (not in Europe): it is Gaba with extended release. Same rules for Pregabalin: it disappears out of your blood, only half the dose is still there after 6 hours.

The big difference between Gaba and Pregab is the absorption. Pregab is better: its linear; easier to understand and to administer. The adsorption is always 80 %.

With Gaba: the higher the dose, the less the percentage that comes into your blood: 100 mg Gaba gives 80 % adsorption; 300 mg gives 60 %, 400 mg gives 34 %, 800 mg gives 33 %. So much of the Gaba-medicine always goes through the drain, and even more if you have only one or two doses a day. So Gaba is less effective, unies you take many portions a day..

I am now trying higher doses of Gaba first, going from 1.200 to 1.600 mg at the moment and maybe a bit more up. Always divided in 4 portions, with 3 meals (easy to remember) and one portion before sleeping. I have only 100 mg tablets, easy to upgrade. I eat nothing in the evening.

If the upgrades of Gaba do not work I will try the change from Gaba to Pregab. Gaba gives me no side-effects, and you never know with Pregab…

Good luck. Glad to hear later on how Pregab works for you.

[Mulberry100 in reply to Hidden]

Thanks for your reply, it will take me a while to process but it’s interesting to get a different view regarding dosage and splitting of dose. The reason I stopped the Gabapentin was that I have a fear of upping the dose as I had the most awful time coming off Neupro patches, a place I never want to go again! I realise the Pregabalin dose equals the Gabapentin dose but I am hoping that by swapping i will get some relief, I am in a place that, at 75, I am prepared to give anything a go!!

[Munroist]

Hi, I took 300 mg of pregabalin in two 150 mg doses one at 8 am and one at 8pm and it was fine but my understanding is you could equally well take it all in one go. I really don’t think you’d notice the difference between 250 and 300, it’s not a big step for pregabalin in my experience. It can take a little while for the effects to fully come through so whatever you choose as a first dose I’d give it a week to get used to it before you change anything.

[Mulberry100 in reply to Munroist]

Thanks for your reply. It’s good to know it took a while for you to see the benefits as I was expecting faster results.

[Munroist in reply to Mulberry100]

You should see significant improvement quite soon but it can take a little longer to fully settle and work out how you feel. Also you can see if there are any side effects before you go up another level.

[briesmith]

I don't want to hijack your post but I want to ask a question that applies to all anti-RLS drug prescriptions and that is, "How do you know if they are working"?

I take 300Mg of Pregabalin nightly and usually not very long before I go to bed. What effect it has on my RLS and my quality of sleep I have no idea. I wasn't aware that I have RLS - I don't have it during the day - until a sleep study reported it.

So I am now taking a pretty powerful drug and I've no clue as to its efficacy. It seems to me that if the NHS wants me on this drug they should be monitoring its impact and effectiveness.

There are devices that I could wear at night that would do this and I enquired into getting them prescribed (along with the drug) but was told they are not available on the NHS. I then enquired about buying the system privately but the cost was over £2,000 so that was a non-starter.

I would add that I was prescribed Clonazepam to be taken with the Pregabalin but I stopped taking it because I wasn't sure of any benefit and taking an anti-depressant continuously worried me. Surely, long term drug regimes should have to be monitored and their continuing, or any, effectiveness measured on a regular basis?

[Mulberry100 in reply to briesmith]

Thankfully, if you had no idea you were suffering from RLS, you must have a very mild case. I have a very severe RLS and have tried several different drugs and, for while have had reasonable relief from each, for different lengths of time so, even though at times I have asked myself “would I be just as well not taking the prescribed drug”, I only have to think back to a time I was taking nothing to be reassured they are worth taking! Certainly, if you have stopped taking Pregabalin, not suffering too much and can get reasonable quality sleep, then I agree you would be better off not be taking it. I alsoagree that long term drugs should be monitored and I take it upon myself to make sure I get regular check ups and reviews on all the drugs prescribed to me.

I do hope that whatever choice you make works well for you.

[Maximus01 in reply to briesmith]

If you did not know that you had RLS (which also occurs during the day) and you did a sleep study, after which you were told that you had it during the night, I think that perhaps you have really Periodic Limb Movement Disorder, which only occurs at night. I did a sleep study also and the doctor prescribed Lyrica (now available as Pregabalin), and also put me on iron supplements. As mentioned in my prior reply to Mulberry, I am now trying out Gabapentin and it seems to work better. I started at 300 mg and now on 600 mg.

[Hidden in reply to briesmith]

RLS or Periodic Limb Movement Disorder (PLMD) only need to be treated if it is distressing or causing daytime fatigue. I'm assuming there was some reason that you undertook the sleep study in the first instance.RLS tends to occur when you're awake and PLM tends to occur when asleep (but in some cases also when awake).

You know if a medication is working when it stops the bothersome sensations and/or you don't feel so tired on wakening.

Because all medications discussed on this forum tend to have side effects (short and long term), I'd be loathe to treat RLS or PLMD unless it was actually causing problems.

[briesmith in reply to Hidden]

Although I am a 100% Cpap machine user - never miss a night and use it all night - I never wake feeling refreshed, I experience a daytime urge to sleep pretty much every day for short periods, no more than 20 minutes or so, mostly around 1.00pm and 6.00pm and as you mention, daytime fatigue. The urge is easily resisted, particularly if I am busy and moving around. It is interesting, though, because of its predictable, cyclic timing.

I always wake with a dry mouth, sore throat and headache. I also suffer occasional tinnitus, (Probably caused by the battering my ears suffer from my snoring.)

My legs feel as though I've held them rigid all night and my knees ache and I suffer from daytime shortness of breath on exertion due, I think in the main, to sleeping poorly and acquiring some kind of oxygen deficit.

I use the SnoreLab app (Android) to record my night time snoring and since I discovered the ResMed furry mask, my snoring has been reduced to a pretty steady level under 65Db. In spite of this I still don't get much value from my time asleep.

Although I was unaware of the problem, a sleep study recorded 60 leg movements an hour(?) hence the Pregabalin. (I was first tried on Ropinirole but experienced immediate augmentation.)

My point in all this is that when a doctor prescribes a drug - and Pregabalin is no Aspirin - they should, at the same time, put in place a means of measuring its impact. Basically, is it working?

[Hidden]

The only reason you might be advised to split pregabalin dose is if you have another condition for which you take pregabalin, or you have very bothersome daytime RLS.I have been taking pregabalin (nightly) for more than seven years and it still leaves me feeling drunk with a slight loss of balance. Because i take it around 8pm, the worst of these effects have worn off by morning.