Dear all, reading these messages so helpful and supportive.
I’m in Oxfordshire, England, on 300mg of Pregabalin per night for my RLS. I’ve put on weight since taking it, and it is now nowhere near as effective. I’ve recently seen the specialist in hospital, whom I do like very much. They are all very reluctant to prescribe Buprenorphine or similar - though it may not be impossible - and have suggested low dose DAs.
Could I ask you all if anyone knows how long, on average, it takes for augmentation to occur when on DAs? I am 65 now, have MS, probably drink too much(!), quite a wild youth, can’t see me living that long really and am wondering if it’s worth the risk.
Thank you.
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Bowie4eva
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No, it is not worth the risk.!There is no set timetable for augmentation to occur. It can occur very rapidly. It did for me - within 8 months. And when that happens, it can be hell to come off it.
Definitely within 5 to 7 years. So, it WILL hit when you're 72, more frail, more likely to fall and cause serious harm during withdrawal.The new American Sleep Academy guidelines will relegate DAs to 'end of life' scenarios, where short term benefits outweigh the inevitably of augmentation.
My advice is don't do it and push for Buprenorphine.
Although it may take some of the enjoyment out of life cutting back on alcohol may be just the ticket. It's a terrible trigger for RLS and for quality sleep in general.
you probably only need to increase the pregabalin… I would avoid DA if at all possible. One of the very, very best drugs for managing this problem is gabapentin enacarbil. 600 mg taken five hours before bedtime but most often fix the problem. Of course the amount varies with each person. Another basic issue is blood levels of iron. You cannot manage movement to sores of this sort without optimizing your iron levels first, I’m hoping that has already been done. The two most important values are the ferritin level, which should be at least 75ng/mL and transferrin saturation, which needs to be around 45%… The normal ranges are not sufficient when you have RLS. Most physicians do not know that so you should seek advice of a sleep specialist. From personal experience, if your irons low, inquire about getting intravenous iron infusions… That can be like a miracle… I’m not kidding! To qualify for coverage, insurance companies may be required to try oral supplements first but again if iron is low IV infusions can really help tremendously!
a little reality check… Alcohol is terrible for folks trying to manage RLS… You need to stop that!
Effective management of the MS should help give you relief as well but that’s not a permanent fix as you know.
Other drugs that really can worsen the problem are under the categories of SSRI and SNRIs…They are RLS mimickers and should be minimized if it all possible.
Again, your weight gain may have a little to do with what’s going on… I would look at better management of the MS if that’s an issue but again, you’re not taking by any means, the maximum dose of pregabalin. I would talk to my doctor about increasing that and make certain you’re taking it two hours before anticipated hour of sleep. Hope this helps!
Hey, im sorry to hear this I know how hellish you must be feeling. Im far from anything medical apart from my own experience and i know nothing about MS but at a glance my uneducated opinion would be you could up the dose, im on 450mg while coming off 1mg ropinirole and if i could do something to the person who invented DAs trust me i would, for rls they are evil and please stay away from them.
I can fully understand alcohol is a little luxury in your life that must be very hard, but for me its such a trigger for my legs i rarely drink and i absolutely adore wine. I really hope you find a way to improve your life and always come on here if you need help or just feel you want to talk out loud about how awful this disease is 🙏🏻
Hello, RLS Andy, I really appreciate this! You are right, this forum is great for just venting, getting encouragement and more ‘proper’ advice! I’d know nothing about the awfulness of DAs if it weren’t for all of you as, in England at least, even the best doctors seem to know sweet fa about RLS, and still treat it as a trivial complaint, rather than the hell that it is.
I could raise the dose of Pregabalin, but sometimes in doesn’t work at all and has given me appalling short-term memory issues, dizziness and, worst of all, weight gain!
Anyway, I have tried several nights of no alcohol, messed about with carbs, sugars, caffeine, dairy, gluten, etc, and nothing at all seems to work and it follows no pattern at all! Last night, I drank, had dairy, fat and sugar — and had, for me, a relatively good night’s sleep!!! Sitting here now with RLS, but there’s always a price!
Anyway, I hope you’re ok and I so appreciate your reply! X
I have brain fog a lot from it, im a chef and sometimes reading tickets in service is hard and my brain take a few seconds longer to process. I too seem to suffer with with how random it is and there is no pattern with how and when it comes on. Atm im taking 60mg of codeine a night and for four nights now ive had the best sleep in two months, i really dont want to take then but i have rules to only take 60mg at night and stop when i get off the DAs.
The weight gain, imo is not direct from the meds but more them causing cravings to eat and also the depression making us want to comfort eat, i do bodybuilding and train 4 days a week, ive lost 36lb in seven months while battling RLS which has been hard but also something to help me keep my focus, I appreciate MS may stop you doing lots but i write this just because it may give others hope. As i now come down off the DAs im worried about agumentation coming on again but ill see. Im also in a huge dispute with my Drs with complaints and looking to sue them, if you have the strength persist with your Drs and push to get the help you deserve!
If you're having issues with pregabalin at 300mg, you definitely don't want to be increasing it. I have found that side effects worsen the longer i'm on pregabalin, such that i'm now coming off (or at least reducing right down).
I agree with ziggypiggy. Alcohol can be a major RLS trigger. Sounds like you are rather tied to drinking. But I can’t help but wonder how much less your RLS symptoms would be without alcohol. All the best to you.
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