Hi, I am wondering whether or not to start using Pregabalin for my restless legs as I'm getting so tired of not sleeping well. I've been on Pramipexole years ago which was absolutley awful and I'm scared to start using another medication after my experience of pramipexole, which I stopped taking about 7 years ago. I have read several news articles about Pregabalin and deaths linked to pregabalin, this is mainly due to abuse of the drug. One thing I wanted to know is if I can still drink alcohol if I'm usin Pregabalin. I only drink at weekends. I just need some reasurrance from anyone who has been prescribed with Pregabalin that it is okay to take it. I would like to be able to start having a better sleep than I do now, as it really does affect my day to day life. I'm not on any medication at the moment and just rely on my massage gun to help calm my legs down which doesn't always help. Any advice would be greatly appreciated.
Worry about starting Pregabalin - Restless Legs Syn...
Worry about starting Pregabalin
If alcohol doesn't bother your RLS now, it won't if you take pregabalin.
Don't be afraid of pregabalin. I take it or gabapentin. The nice thing about it is if you don't like it or have side effects you can't stand, it is easy to come off it by reducing very slowly and you won't have any withdrawal symptoms. It is not like pramipexole.
Beginning dose is usually 75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 50 mg pregabalin.] It will take 3 weeks before it is fully effective. After that increase it by 25 mg pregabalin every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours.
Most of the side effects 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 300 mg pregabalin."
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...
Thanks so much for your info Sue, I really appreciate it. I'll book an appointment with my GP next week and give it a trial.
Please don't suffer in silence.First get full panel iron blood tests and raise your serum ferritin above 200ųg ideally. It may resolve your symptoms. Also ensure you're not taking any trigger meds like anti depressants, sedating anti histamines, statins, beta blockers & PPI gastric meds.
Pregabalin is NOT like the terrible dopamine agonists. It works very well for many people and is first line med treatment amongst experts. If you have no history of drug abuse, you won't abuse Pregabalin.
And you can drink alcohol in moderation while on pregabalin.
Thanks Jools, I had a full iron blood test last year and my ferritin levels were quite low but my GP noted "no further action". I will ask my GP again for another full iron blood test before I start on pregabalin. It just takes so long to get an appointment in the UK these days.
It really is terrible. But if results were 'no further action' you can safely take iron pills. So buy some ferrous bisglycinate. Usual advice is to take every other day. Try it and keep taking it for a few months. It might help. Some report that taking it every night just before sleep stops all their RLS. You might be one of them. If it doesn't work straight away, just take every other day as that raises levels faster and can avoid tummy issues.
Looking back it was 34 and I believe I told you at that time how to take iron (although I may not have) but let me repeat it again and if it the results show your ferritin is less than 50 ask for an iron infusion to quickly bring it up. If your doctor won't you can also get one privately by paying for it, but it costs around £800.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron.
It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. Don't wait another year 😀Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible.
As far as trying taking it every night, if it works it will completely stop your symptoms for that one night only. If not, go to the every other night.
Thanks so much Sue. I'll begin the process of taking iron supplements again and get a full iron blood test. I won't give up this time.
Sue when u say two tabs of 325mg. Is that 650mg in total. Or in the case of bisglycinate 75mg - 100mg is that by two tabs or in total.Thanks
Eithne
In your case since your ferritin is already over 100, just take either one 325 ferrous sulfate or 50 to 75 mg of iron bisglycinate. You want 65 mg of elemental iron which is what is in the 325 mg of ferrous sulfate and the the 50 to 75 mg of iron bisglycinate is the elemental iron so it is hard to get 65 mg.
In barbarylane's case her ferritin was 34 last year which is why I said more.
I can confirm you can drink while using pregabalin. I don't know how advisable it is, but I do it occasionally. Also, pregabalin is nowhere near as evil as Pramipexole. (I'm in a similar boat, having recently tapered off of pramipexole and started pregabalin.) I'm taking 225mg currently.
I also have a few now and then and take pregabalin. That said it is not recommended so start slow, make sure you don't overdo it and see what the side effects are:
Thanks so much for the advice. I am just sick of waking up every single night massaging my legs and maybe not being able to get back to sleep for a couple of hours until my legs settle down again.
I have taken pregabalin for over a decade now. I'm always looking for alternatives as i'm not keen on the side effects (which for me have increased over time) but it works well to control my periodic limb movements. With regard to alcohol, my advice would be to go slowly when you first try it. I could drink on pramipexole, but not pregabalin. I can have a small glass of wine without a problem, but any more and it makes me really nausesous.
Please keep in mind that pregabalin can have substantial weight gain as a side effect. If you have Obstructive Sleep Apnea it has the potential of making it worse because sometimes OSA is tied to excess weight. Another side effect I experienced is excessive sleepiness. In particular waking up was difficult and I went to work late several times before I quit pregabalin treatment
In all fairness, it was fairly effective for RLS when I was on it and I did sleep well and deeply … but for me the side effects were unacceptable especially because I also have OSA.
Everyone experiences drug effects differently and perhaps it will work for you. So, if your doctor wants you to try it.. by all means do.
Best wishes for restful sleep!
Please say "can" have substantial weight gain and relate your experience, since "tends" implies it always does.
Hi Sue, the definition of ‘tend’ is “regularly or frequently” and I note that weight gain is a common side effect of pregabalin. Isn’t AI wonderful?! Personally, a little weight gain wouldn’t bother me, it’s a small price to pay if it relieves RLS.
The change in weight after 12 to 18 months of treatment was +2.9 lb in the pregabalin group, pregabalin at doses > 300 mg/d; The change in body weight after > 12 months of treatment was, +3.6 lb in the pregabalin group doi.org/10.12788/fp.0111
Not exactly substantial weight gain which is why I said to use can" have substantial weight gain rather than tends.
And 300 mg is at the high end of the effective dose.
Changed the wording … thanks !
Thank you for doing that.
ive been on pregabalin for a year or more now (after gabapentin which didnt seem to help and pre that pramipexole which did work and then turned into a nightmare )
currently on 300mg before bedtime which generally works. im reluctant to up the dose further until I really have too and ive found taking one over the counter codomine/paracetamol tablet in the night does the trick if my legs are still playing up. i have the occassional beer in the evening as well without any problems
No side effects that ive noticed to date
hope this helps
Hi Barbarylane, Ive been taking Pregabalin now for around 18 months, i started on 75mgs, and after 3 months had it put up to 100mgs, and it works very well for me. I havent needed to up the dose since then, and its very rare for me to have any signs of RLS these days, i guess im lucky that such a small dose works for me really, and it gives me plenty of room if i need to up the dose in the future, good luck if you decide to try it, i hope it works as well for you.
As Sue said one of the good things about pregabalin is that you can come off it easily without side effects so it's something you can try and if it doesn't work there's no issue (other than you will be looking for another treatment).
It's always a good idea to change medications slowly so you can get a good feel for the benefits as well as any side effect or disadvantages .. that helps you make good decisions about whether to continue or not. I took pregabalin for a year and found it useful for managing neuropathic pain, it also helped with anxiety which was making everything feel worse than it was, although it didn't seem to help much with the RLS. However other people on the forum find it very useful so you just have to see.
I stopped it because of a slight "cognitive fog" and afterwards I definitely felt like my mind was clearer but different people have different tolerances and reactions. Regarding alcohol the the advice I was given by the dispensing nurse was that alcohol was ok, but take it steady because some of the effects of pregabalin are quite like the way you feel after a couple of small drinks anyway, more relaxed, slightly disinhibited and less concerned about your problems.
When I came off it I did so in steps of 75mg maybe one every few weeks because that's the size pill I had but that was fine. At one point I paused because I was going away and wanted to be sure that nothing would affect my holiday and then I picked up again afterwards with the reduction but it was an easy process and the main concern was me worrying that my symptoms would be worse or difficult to cope with - which they weren't, partly because the anxiety had reduced. Good luck.
I have used pregabalin for a few years,gives me more comfort than all sorts of other things I have tried.I take 1 one 75gm each day.Good luck'
Have had RLS for years. Alcohol always makes it worse.
Start slowly. My husband experiences too many side effects above 300x 3x day, gabapentin. See link below. This is the 10th most common drug prescribed in US. Pregabalin is related to gabapentin. Above 900mg causes major brain fog for my husband. At higher dosing people are more likely to experience withdrawal if not tapered slowly. You may get good results with a lower dose too.
drugs.com/medical-answers/l...
I definitely will start slowly. I think I'm going to get tested for my iron first before I start any medication
I have been on pregabalin for about 9 months. I started on 50 and increased to 100mg the next month and have not needed to increase. It has been wonderful for me. I very, very rarely get RLS and have no side effects except a very welcome one which is a much deeper, uninterrupted sleep. I do dream more vividly, but I look forward to that, as well as the ease of falling to sleep. Prior to taking pregabalin, I had difficulty falling asleep (not related to the RLS) and frequently woke up, and I was often unable to fall back to sleep. This no longer happens now since taking pregabalin. I drink wine a few times a week and keep to 1 glass, as I find that if I exceed that, my RLS does kick in. I gained absolutely no weight and it is thought that pregabalin can cause increase in appetite and therefore, some will eat more. So don't be afraid of taking it for that reason as many do not gain weight. (I have a tendency to gain weight easily, also.) As Sue, said, you can go up much more than I am taking and I suppose 100mg is on the low side. Good luck with it!
Thanks so much for your advice. I exercise nearly every day so I should hope that I wouldn't put any weight on. It sounds like heaven to have a deeper and uninterrupted sleep.
I started Pregabalin 3months ago after some horrendous months of relentless nightly RL & was totally exhausted.I had to battle with myself as was (& still am) so scared of becoming addicted to any drug but was on the floor with tiredness & couldn't function properly even though am now retired I still have a very busy life & need my energy levels to be @ the highest level.After reading the many posts on the different medications available & also the many self help suggestions I had to make a decision that I couldn't do this on my own & needed medical help which I now have although it's generally me telling the Dr what the uptodate information on RLS is from this forum & relaying it to her !
Nevertheless @ moment the very low dose of 75mg Pregabalin is working for me with only the occasional interrupted night & I have plenty of 'wriggle' room to increase if necessary so I feel in control & without the fear of augmentation & addiction.
It is still early days for me & I'm very aware this may change over time but having a deep uninterrupted sleep every night has made me feel my old self rather than a washed out ,exhausted old lady !
Wishing you all the luck on your Pregabalin journey x
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