Hello all, especially Sue, I haven't posted for a while but would like some advice on dosing please.I have been off Ropinerole for 3 weeks now, I cant say it has been easy, because it really hasn't and still, some nights make me want to start taking again, at 3am in the morning after not having a proper night's sleep for days it would be easy to give in, I keep telling myself by the time they kicked in I will up for the day and if i did, I would only have to go back to day 1 again and I really don't want to do that.
I am still taking my gabapentin x 1 100mg around 5pm and my other 2 100mg around 8pm same as when I was reducing Ropinerole, what I want to ask is should I continue this way, or should I take the 3 in one go around 8pm. My legs can start around 5ish and at times even after I've taken the 2 at 8pm they can get bad again around 10pm, but Sue has said they will get worse before they get better so was expecting this and until I've been off Ropinerole for around 7 weeks not to increase Gabapentin.
I honestly can't thank this group enough because, if I hadn't found you I would still be going from Ropinerole and Pramipexole still and also thankful that my doctor goes by the advice and directions I have been given on here to when and how much to take of Gabapentin.
Once again I thank you all, Debbie
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Congratulations. I know as you said, it was hard but you did it !!!
You don't need to wait 7 weeks. It won't be fully effective until your symptoms settle preferably to what they were before you started on ropinirole. If they have not changed in say 4 days, you can start increasing and in any case you can go up now by 100 mg every couple of days to 900 mg, 600 1 to 2 hours before bed and 300 mg 2 hours before that. But since your symptoms are starting around 5 pm you could take 300 mg at 4 pm and the 600 mg 2 hours after that. Since you are getting symptoms that early, the chances are that your RLS has not settled since normally you would only get them at night. So eventually you would want to move to the 1 to 2 hours before bed and 2 hours before that. Once you feel things have settled you can continue increasing by 100 mg every couple of days.
Sadly, I have to go back on Statins. Can you let me know a safe one, please, or am I ok with Atorvastatins, please? I have an appt this afternoon, so hopefully, someone can let me know before my appointment 🙏 thanks
Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Thank you Sue, had an awful visit with a fill in Doctor as mine was not available today and I was out of Gabapentin. She virtually told me information on here was false and I shouldn't listen or take advice andni should taking doses 3 times a day not just in the evening, I ended up in floods of tears by the time I left. My doctor isn't back till January so it's going to be a long wait till then.
Yes thank goodness, I'd have been climbing the walls till mid January otherwise, she wanted me to take Ropinerole and didn't want to also give me diyhidrocodiene as it was for pain and not what I was taking it for, I explained it was for when my legs get bad occasionally thru the day. I felt like a right cry baby she got me so upset, look a right mess today lol.
When you see your regular doctor again you might tell him/her what happened and perhaps s/he can educate her so it doesn't happen to someone else. Perhaps give him/her a copy of the Mayo Algorithm so s/he can point out the parts that apply or the NICE guidelines if appropriate - I can't see them since I live in the US. Also these studies on dipyridamole movementdisorders.onlinelib...sciencedirect.com/science/a...
Thanks Sue, wanted to ask what to do as last couple days have had increased RLS and its started a bit earlier, last night I took another 300mg after I'd taken my usual 600mg before bed, so I actually took, 300mg at 6pm as I usually do then 600mg at 8pm again my usual dose, then at 11.30pm took 300mg as a last resort. Should I take 600mg around 6pm and then another 600mg around 8pm? I am trying to take the 1st dose later in the day but atm its not working for me, thanks Debbie
Hi Sue, I do have some 100mg and yes im mostly in bed at that time, I've taken 600m and another 600m tonight and my legs are starting now, getting worried as I've been so good up till now, I really don't want to go backwards 😒
right now, I am taking 1 mg Requip at 6pm, then at 10:00 1 mg Requip and 100 mg gabapentin. trying to decide if I should replace the 6pm requip with Gabapentin or the 10pm one first. I just do not sit down much during the day because I just can't. Hoping eventually I can be more normal 24 hrs a day. Your reply was very helpful. I finally have a doctor more up to day on RLS, but I don' have an appointment until Jan sometime. They suggested I try to get of the requip, but did not give very detailed instructions.
I appreciate your story. I am slowly reducing ropinirole and am down to 2 a day and one gabapin. It is not easy, but under the direction of a new doctor that supports me.
That's good as most doctors look at you like your talking a different language. I took 3 a day from start as stated, at first a doctor which I didn't normally see, told me to take one at lunchtime and the others at teatime, but you don't need them during the day, one wasn't enough so you may need more. Wish you all the best as its not easy reducing and coming of Ropinerole or pramipexole.
I see you are new to the forum. Welcome. You will find lots of help, support and understanding here.
You may know some or even most of this but in case you don't:
To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin beginning dose is usually 300 mg gabapentin. Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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 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 ." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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 uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I have had RLS for a year and a half and still have bad nights. I now take 1 300mg of Gabapentin about 8:00 then another about 11:00 when I go to bed. Some nights I have had to get up and take another about 1:00 AM. The Endocrinologist said no more than 1200mg a night. I only get RLS at night ..... If I watch TV, I am usually ok. But if I want to go to bed, it starts as soon as I lay down.
I tried taking Pregabalin for a week, but it makes me too drowsy the next day.
What really worked for me is taking 1/2 of a Tylenol #3 and 1 300mg gabapentin. This really worked with no side effects and I felt alert and rested the next day.
But now none of the doctors will let me have Tylenol #3.
Welcome to the forum. You will find lots of help, support and understanding here.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
On the gabapentin you should take all 600 mg 1 to 2 hours before you go to bed. 600 mg is a very low dose. Since you are sometimes waking up at night increase it by 100 mg 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. 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. . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
Your doctor is wrong to say you should be limited to 1200 mg. although you probably won't need that much. If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about 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 or print out the appropriate parts if needed as many doctors do not know much about RLS or are not uptodate on it as your doctor obviously isn't if s/he thinks you can't take more than 1200 mg and won't prescribe tylenol #3 which at half a tablet only contains 15 mg of codeine while the Mayo Clinic says that 30 mg is only a starting dose Https://mayoclinicproceedings.org/a...
If needed change doctors.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thanks for your comment. I stopped taking it soon after starting as it wasn't that helpful and made me drowsy in the day. I just take 2mg of valium if it gets really bad. Not much help but medical science isn't that good with these kind of issues, eg. neuropathy etc. so we need to do our own research and find the most helpful. All the best in your endeavours.
Are you talking about gabapentin? If so did you give it a few weeks for the side effects to go away? If you did, you might want to try pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Beginning dose is 75 mg. It takes 3 weeks to be fully effective. After that you can increase i by 25 mg every couple of days until you find the dose that controls your symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin)." If you are not familiar with the Mayo Algorithm check it out at Https://mayoclinicproceedings.org/a...
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Good job Debbie!! Horah! Way to go! 3 weeks is a huge effort to get to. I know having weaned off Pramipexole and clean of DA's since Oct 24. You definitely suffered, we all know that. I agree that you may still be feeling lingering augmentation since your rls comes on 5ish. Mine starts up 8:30pm or even later now. And I too am uncertain about when to increase my Gabapentin dose, or at all. I'm needing a small amount of Tramadol still to be calm and sleep. Keep asking questions and we will cheer you on....with great advice from many here. Teresa
Hi, and thank you this is just what I needed to hear today after an awful visit with a stand in Doctor today, who had me in tears. I take dihydrocodiene during day if needs ve and also sometimes half way through the night and they seem to help. I am taking 300mg around 5/6pm and then 600mg about 8pm, manage to sleep most nights now, but had a bad couple days where I've been so restless it's would ve easy to give in. I honestly don't know what I would have done without everyone on here. Well don't to you too its not at all easy xx
Hi debbie ,like you with so much help from Sue I slowly weaned off 4mgs of Ropinirol in March til October. It was pure hell and Im not sure how I survived but boy its been so worth it . I have no symptoms in the day or evening but they often wake me a bit in the night . Im on Gabapentin 1800mgs starting about 4pm 6pm and 8pm . I also have Clonazepam 4mgs and just been put on 5mgs of Oxycodone/nalone 6hrly but tbh honest im starting to feel a bit zombyish now in the day. Sue any ideas? Any changes i can tweak slowly? Dont think clonazepam has ever helped.Still wake 1 and 3ish but life is soo much better . Thanks and good luck covobay x
No im only on 5mgs Targinact 12 hrly tho consultant has changed it to 6 hrly if I need it. Of course the gp is thrilled ...not. Im down to 1mg Clonazepam and have been for a while .
Hi Sue , I just seem stuck . Im taking 600 mgs of Gapapentin at 16 .30 ,18 .30 and 20.30. At 20.30 I take 2mgs Clonazepam and at bed time 22 ish I take 10mgs Targinact. My evenings are generally spent fast asleep .If I divide the Targinact dose to 10 and 10 Im like a zombie.My days and evenings are pretty good and I will get off to sleep but then legs kick off now every night about 1am onwards so have to get up. I just dont know what to try next . Gp not interested .Appt with neurologist could be 5 months but not impressed anyway , seems pretty clueless .I.m sorry to be such a pain . Gp doesnt agree with me taking Clonazepam and Targinact as it as I might not wake up ! Little chance of that ! HELP. !
The only idea I have is not much fun and that is to adjust your sleep schedule. Some have found they can sleep from 4 am to 11 am and then stay up at night.
Well its food for thought I guess ! Got a neurologist appt thro today for March. At the moment I feel like a doddery zombie and I cant carry on like this . Last night I slept from 12 til 3am , woke naturally . Lay or read until 5ish then slept til 10 . Thats ok if i havent any work at 9 !
Hopefully one last question . Been off da's now since Oct /Nov and now on 1800 mgs gabapentin , sometimes a bit less . Clonanzepam 2mgs and Targinact 10mgs . Legs are generally good but Im feeling incredibly depressed which just isnt me . Someone mentioned Gabapentin on a previous post. I was expecting this feeling of euphoria but sadly its far from it . I hate feeling like this
I feel as if im becoming a bit of an insomniac which is very strange ! Is it likely to be Targinact , Clonazepam or Gabapentin or just one of those things . I would have thought they would have knocked me out ?!
I think that instead of adding yet another medicine to combat the effect of the others, it is better to review your meds to see if you can cut down of any of them. One by one and slowly. Personally, I don't like taking meds, they all come with (unwanted) side effects, and if you take mire than one type they have often hardly known interactions.
Hi sue, im kind of reluctant to add more drugs. What do you think about 10mgs of Targinact at bedtime instead of the 5mgs ? Ive never felt clonazepam helped at all so going to wean slowly i think as he had me on 4mgs which is quite a lot alongside the Targinact . May be worth asking again for Buprenorphine but dont think he will agree despite me sending him video evidence. I 'll drop him an email via his secretary . Will keep you posted . Thanks Angela
Things are pretty good . Gaba is still 1800mgs in evening. Clonazepam down to 1mg but never convinced it helps. Targinact 5mgs , 12 hrly is plenty , may try just bedtime tonight . Been off Ropin about 11 weeks now so when should I start weaning off the Targinact or shouldnt I ? Got pharmacy chat today and she is bound to talk about weaning off it soon . Just worried Gaba wont be enough . Happy Christmas / Thanksgiving and thank you so much for getting me through this
You could try weaning off the taginact a small amount and see if it affects your RLS. If not try a little more a couple of days later. I suspect though that you will need it.
Hi , I missed my 10am dose on purpose of Targinact but by 4 my legs were misbehaving. Spoke to pharmacist today because Im getting low on Gabapentin and her aim is to get me off it !!!! I was speechless and then explained its replacing my ropinirole and will stay on it . She wasnt happy !
Those 3 drugs all have interactions. Gglabapentin and clonazepam are okay. It's not recommended to take benzodiazepines (clonaz) with opioids (oxycodone). And gabapentin and opioids in combination can cause respiratory depression, particularly in certain populations. I'm amazed that your doctor/pharmacist has okayed all 3 together.
Hi there 👋 , I'm sorry that you're going through such struggles. Unfortunately I can't help you in terms of taking Gabapentin as it's a drug I'm unable to tolerate. Having suffered with RLS all my adult life I've found that Roprinirole is the best treatment for me. Sleepless nights are the pits and, for me, make my symptoms worse. I know that if I am late or forgot (how?) to take the meds I take it as soon as possible regardless of the time.
I wish you well and all the very best at finding the right solution suited to you, this is truly a horrid, debilitating condition.
Thank you so much and I really hope that 1 day you can come of Ropinerole, I wish I'd never ever heard of that drug. At the moment, I'm not finding the full benefit of Gabapentin but I have up until the last couple of days. The doctor I saw last week, has told me to take one 300mg 3 times a day, I just can't get through to them that they are not needed during the day, all they say is these forums can be harmful and support drug companies to support certain drugs they want to promote. We are so lucky to have Sue and all the others that are there to help us get through this awful condition.
I agree with your every word . Im not sure without this group particularly Sue that I would still be here. I had been on Dopamine agonists for over 20 years and I started to wean in March off Ropinirole . Ive been off them about 10 weeks now and it was pure hell but Sue said it would be worth it and how true . Im still juggling meds a bit but take 600mgs of Gabapentin at 16.30 then 18.30 then 20.30. At bedtime I take 1mg of Clonazepam and I also take 5mgs of Oxycodone at 10am and 22.00.The last 2 should be shortish term and had to go privately in the Uk to get the Oxycodone which was £55 for a month but luckily my gp will prescribe it now . The journeys still not over , I feel quite flat and have lost my love of life but hopefully I will soon get my mojo back . I do wonder if the drugs are not helping my mood. Anyway good luck , keep going , it is worth it !
Happy anniversary. It does get better but you may need an opiate to get you though the night . If your gp wont help.you may have to go private like I did Good luck , be strong
Sadly we don't have NHS in Guernsey and all our doctors are private, they cost a fortune each time we go £60 for a 5 minute consultation and I don't think they will prescribe opiats, it's hard enough getting a controlled drug like gabapentin, my last visit made me feel like a drug addict, that had run out before time as I'd forgotten my ID, thankfully, it was a locum UK doctor and not my usual one who understands what I'm going through and listens to what I'm advised on here, im verynlucky to have her.
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