Pregabalin?

[Inkosikazi]

Some in this group have advocated for pregabalin. I was wondering about side effects. I had a bad side effect from pramipexole, so I am leery about starting a new medication. Also wondering about dosage for a male of 6' 1" and 200 pounds. Thanks.

[SueJohnson]

I assume you are off pramipexole. If you are not you need to reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need a low dose opioid temporarily to help out with the symptoms. Then start gabapentin or pregabalin 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. I always suggest one start with gabapentin rather than pregabalin as it can be increased in smaller doses (100 mg). Once you find the correct dose you can switch to pregabalin if you like or stay on gabapentin. They are basically the same except that you don't need to divide the dose of pregabalin but can just take one dose (Divide the gabapentin dose by 6 to find the equivalent pregabalin amount). Starting dose for gabapentin is 100 mg, for pregabalin 75 mg. After that increase the gabapentin by 100 mg every couple of days or the pregabalin by 25 mg until you find the dose that works for you. For the gabapentin, take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of the gabapentin or pregabalin. If you take pregabalin you can take it in just one dose 1 to 2 hours before bedtime. The side effects are basically the same. Have you had your ferritin checked? If so what was it? Improving it to 100 helps 60% of RLS patients.

[BAK524]

Pregabalin seems to work for most people, but there is a subset that can't tolerate this medication. I am one of them. Among the side effects I experienced: difficulty walking (that eventually improved), loss of motor coordination (I was unable to type smoothly on a keyboard) constant twitching, shaking, and difficulty starting to speak a sentence. Initially it made me extremely tired. Eventually it caused sleep disturbances and anxiety, including moments of disassociating from reality. I started at 150mg and am now at 62.5 mg. I'm tapering extremely slowly, as the withdrawal side effects have been brutal (headaches, insomnia, anxiety). This medication did help my RLS, so this has been a major disappointment. If you start on pregabalin, try and get 25mg pills and increase slowly. I hope that it works for you.

[Pam34]

I’ve been on Pregabalin for over 4 years. I take 150mg and very occasionally take another 50mg in the night if required. Previously to this I was on ropinirole (augmentation) and Tramadol (tolerance). This has been by far the best.

I agree with Sue, with most medication there are side effects, but these lessen within a few weeks so it’s worth perseverance. For me I had balance issues, particularly at night, which improved, weight gain, which settled, and tiredness, which either lessened or I got used to. To be fair I was so used to being tired during the day because of my legs keeping me up all night that I can’t remember what a ‘normal’ person with a good nights sleep should feel like! So all in all Pregabalin suits me very well. Not perfect but so so much better than anything else I have tried.

Pam

[Munroist]

Hi, I took pregabalin for a year and found the side-effects quite tolerable. The main thing for me was a slight loss of mental sharpness similar to how you might feel after a couple of drinks. There’s a degree of disinhibition so you have to be careful about what you say or do sometimes (again a bit like after alcohol), and I occasionally had a sort of hiccup/stall when initiating speech in noisy/social situations. It was good for reducing anxiety. There seemed to be slight weight gain but that stabilised and was probably down to carelessness. I took 300mg a day (I’m 5’ 11” and 180 pounds) which is towards the upper end and most people don’t seem to need much more. I started on 150mg (75mg twice a day) and waited a few days before increasing to 300mg a day as the effects do build over a few days and it can take a while to notice the changes and for things to settle. In the end I decided to come off it as I was taking it from neuropathic pain and it has got me through a difficult patch, I wanted the sharpness back and I don’t like taking drugs unles I really have to . I reduced the dose by one 75mg tablet every few weeks and it took me about two or three months to come off it which was fine. While I was on it I was quite happy and if it makes a big difference to your RLS I suspect the side effects will be worth it.

[Ex-rugbyplayer]

Hi,I was on Pramipexole from 2009 and eventually taking 1.83 at night. My GP kept increasing my dose every time my symptoms go worse, then augmentation set in. About a month ago I saw a neurologist who wanted me to reduce my Pramipexole by .26 every week and start on Gabapentin 100. He wanted me to do this for 3 weeks. The first 2 weeks I sailed thru with no side effects apart from being careful what I ate. The 3rd week was tough with my symptoms coming back though not as severe. Im currently on Pramipexole 1.05 and 300 Gabapentin at night. I’m now in my forth week and I’m still struggling with RLS. I’ve a telephone consult tomorrow to discuss what has happened and what happens next.

So to answer your question Gabapentin worked for me, though I feel my 300 wasn’t enough in my 3rd/4th week. I would say give it a try, if it doesn’t work for you I would seek advice from a neurologist who has experience of RLS.

[SueJohnson in reply to Ex-rugbyplayer]

It is recommended that one reduce by .125 mg at a time, so you might want to go back up to your previous dose for a couple weeks and then try reducing by only .125 mg. Also, you might need a low dose opioid temporarily to help you through those last reductions. On the gabapentin, there is no point in increasing it until you are off pramipexole for a few weeks as it won't have much of an effect.

[MumofSam]

I was on Pregabalin alone until quite recently for a couple of years, after having weaned off Tramadol and Pregabalin but finding it intolerable so giving up after about 8 months and starting on Pregabalin again. I was on 2 x 50mg capsules a day. At first it was great, other than the tiredness, but it didn’t take long before it really wasn’t doing anything much. Last year I got the prescription changed to 2 x 100mg capsules. Again it worked reasonably well for a short while but then stopped working. I decided to reduce the amount down as I couldn’t see the point in taking so much for no effect, and about a couple of months ago I stopped taking it altogether. Things aren’t that great, but Pregabalin made no difference for me and I was fed up of feeling like a zombie every morning.

[SueJohnson in reply to MumofSam]

You might have needed more pregabalin. You can go up as high as 450 mg. The question for you is whether you would rather feel like a zombie without RLS symptoms or whether you would rather not feel like a zombie but have RLS symptoms.

[SueJohnson in reply to MumofSam]

Or you might try horizant and see if that works better for you without the morning zombie effect.

[MumofSam in reply to SueJohnson]

Thanks, but I was more worried that increasing the dose wouldn’t help, as when I did it worked for a while and then stopped working. I hate taking meds and would rather do without, but I’ll have to see how it goes.