I have dreadful RLS, often during the day as well as the night, and I have been taking 300mg of Pregabalin daily, 6 x 50g spread out at evening and night time. I put on some weight when the Pregabalin set in, so self-reduced to 250g.
It all seemed to work pretty well at first, but has worsened recently. I have MS, so it’s probably related to that, and my consultant has suggested possibly changing to Gabapentin
Do any of you know what the difference is and if this change is likely to be helpful?
Sorry for long question and thank you all so much for listening! X
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Bowie4eva
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First off, you don't need to spread out taking the pregabalin. You can take it all at one time. Yes, you can switch to gabapentin if you want. the side effects of both are the same but many people find the side effects of one do not affect them on the other. Multiply the pregabalin dose by 6 to get the correct gabapentin dose, so 250 times 6 is 1500 mg. Take it 1-2 hours before bedtime. Since you need more than 600 mg take another 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. And since you need more than 1200 mg, take 300 mg 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people.
Thank you Sue. Still not sure what the point would be of changing from Pregabalin to Gabapentin, as I thought Pregabalin was supposed to be better. Just found out my Serum Ferritin is 64.7 and my Transferrin Saturation 20-45. Presumably the former is way too low? How do I raise it, please? I am UK based. Thank you. Nice to have someone to share this horrible condition with!!
Pregabalin and Gabapentin are basically the same, so one is not better than the other except that it is easier to remember to just take one dose with Pregabalin. Yes your ferritin is low for RLS. Improving it to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Since your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. Once your ferritin is between 75 and 100 , you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric 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 later have an iron infusion then ask for a new blood test after 8 weeks.
No. I am not a doctor. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
Thank you, Sue and Joolz, very interesting reading, I am on 300mg Pregabalin, 20mg Omeprazole for ongoing digestive issues (had duodenitis and no omeprazole means awful issues, so even if it worsens RLS, lesser of two evils) and thyroxine, but no other medication. The Omeprazole I’ve taken for years, so don’t think it’s that. Take 2000mg VD3 and also some VK2 and the odd VB12, and multivitamin/ mineral just in case!
As a result of your answers, am talking to my GP and consultant re ferritin levels etc. Also considering acupuncture. But feel a bit perkier now. Sincere sympathies to all fellow sufferers. 🤗. Thank you.
I was interested to hear that you do not have to space out Pregabalin. My GP told me i had to. So I am taking 50 mg in the morning and 100 mg at night. I have also managed to reduce my Roprinorole to, most days, to 2 x 0.5mg. If i know i am going to have to either sit around at work or get in a car for a journey then it has to go up to 3 or 4 but i was on 6-8 so consider i have done fairly well to get down to this!! I am so so tired all the time and i know Pregabalin is a sedative. So could i take the whole lot which would be 150mg at night. I guess it is trial and error. I presume i am going to have to increase the Pregabalin quite a bit yet to even try and reduce the Roprinorole further? I guess this is where the real fight will begin.
I am also waiting to go to the sleep apnea clinic. I was diagnosed nearly 3 years ago as fairly mild and only just being picked up for clinic and referred as high priority now? I always guessed it was the Roprinorole which made me so tired and sleepy but who knows? Kinda looking forward to that appointment to find out more.
It helps so much talking with other people who suffer with RLS. people have no clue how it totally controls your life. It's just so horrid and can see it only getting worse. I also get terrible pains in my legs, often my shins really bad. Anyway must stop moaning. Good luck to everyone and thanks for your support and such informative conversation
Trouble is everyday is a different day for me - i think i will give it ago!
Gather also amitriptyline and Naproxen could be contributing factors as well - both of these i take although try not to take Naproxen unless i really need it. should Amitriptyline be easy enough to stop taking?
I also have MS and RLS. Are you on any other meds for the MS? Many medications can worsen RLS. Most sedating anti histamines, anti depressants, including Amitriptyline often given for MS nerve pain, statins, beta blockers and PPI gastric meds.
I've tried gabapentin and pregabalin and found the pregabalin had fewer side effects.
You don't need to split the pregabalin so maybe try taking 250mg all at the same time, about 2 hours before bed.
Has anything else changed in the last few weeks? I presume you were not on Dopamine Agonists like Ropinirole or Pramipexole?
Hi all. I too am figuring this out. Thanks Sue and others, I stopped Tumeric, and I have spread out the magnesium, and take iron right before bed with C. Also reduced Melatonin which someone had said can make RLS worst. At present I am taking 50mg pregabalin , up from 25 mg. Starting slow because it makes me tired in day, even when I take at night. My RLS discomfort seems a lot better, but I have vibrations throughout my body (head to toes) every day. I am yet to get into Movement disorder clinic for final diagnosis, so still waiting for further workup for MS and Parkinson's, or just RLS. Since a few of you on this thread have MS, either of you have weird internal vibrations in addition to the RLS. pregabalin doesn't help them. Not sure yet what will. Do any of you with RLS have weird uncomfortable feelings in the legs when sitting in day. I am a therapist, and as day progresses I can barely sit still from the discomfort. When I am done with my sessions, and lie down or lean back on couch, the weird leg symptoms are better. not sure what is going on.....Sorry to go on and on. I just can totally relate Bowie, and I love that others here have found ways to manage...hugging you all.
Hug back and thank you all for sharing. Neurological things are so weird. So helpful though all this info. Because of that delightful disease, I also get up to have a wee about 3 times a night, and each trip seems to exacerbate the RLS!! But I will try taking all the Pregabalin before bedtime, you never know. Barrel of laughs, this condition !! Hope everyone has a nice weekend.
I have internal vibrations throughout my body which bother me when I lie down for a nap and when I lie down to sleep at night. I don't have MS and my RLS is completely controlled, but the internal vibrations didn't start until after my RLS got worse.
thank you sue. Yes, if I move around I almost feel normal. But lying or sitting internal vibrations are there. What do you do to help you sleep sue? Can you fall asleep regardless of the vibrations.
i have internal vibrations that is my body seems to jump inside my arms my insides it really is the weirdest thing nothing stops it and pregabalin makes it worse i take 1.25 and have for years but it doesnt work now and i havent been to sleep for 3 nites yes as soon as i relax in the day my legs go funny and i have a terrible back ache.
thats interesting that you say pregabalin makes it worst. I just recently starting this slightly higher dose, and I am monitoring how it affects my vibrations. too early for me to tell, but I agree...it is an annoying frustrating symptom.
sorry its pramipexole i take 1.25 tablet which causes my legs and arms to become restless for at least one hour after but i was trying to come off pregabalin.... lyrica .i took a 150 tablet after i had been on here reading what other dear sufferers were doing had the best sleep thankyou to all of you i will keep taking my lyrica xxx
i am confused - do you mean one tablet of 25 mg pregabalin? If so that is only a beginning dose, as according to the Mayo Clinic Updated Algorithm on RLS, the normal effective dose is 200 to 300 mg. So you might want to add 25 mg every 2 days until you find the dose that works for you.
hi Sue thankyou for your reply i am on 1.25 tablet of pramipexole an hour before bed which makes my arms and legs jump and have internal vibrations i thought it was the lyrica ...pregabalin but after reading your answers i took 150 of pregabalin and had a lovely sleep thankyou xxx
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