Would people mind saying what medication they have taken for their rls and what positives and negatives they have experienced. I am seeing my doc next week and would like to go armed with as much info as possible!!! I am getting confused with all I have read. Thankyou x x
Medication survey: Would people mind... - Restless Legs Syn...
Medication survey
Written by
thedragon
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52 Replies
•
I take 3mg ropinirole each evening - started on 1/2mg and then slowly increased
The trade name of the tablet is adartel - this is a quick release ropinirole.
Works for me to get to sleep most nights - but not last night unfortunately!!
Negatives include headaches until you get used to the dosage and I now get symptoms during the day as soon as I sit still.
Other problem which has a name I cant remember is fter a while on the tablets you start to egt the symtoms earlier on an evening before you take the meds and can wake up at 4am in the morning with RLS or just cant sleep
But overall its a balance for me at the moment which is managable
Hope you get on OK with the doctor and they have some understanding of this horrible condition. Dont let them try and brush over it.
Good luck
Thankyou
• in reply toharecatcher
think you mean Augementation here Harecatcher
harecatcher• in reply to
That's the word! Thanks !
I have exactly the same problem as what you have written. Infact I could have written it word for word. I have given up using ropinirole! I use Co-codamaol sometimes. 
What dosage of ropinirole did you get up to when you stopped?
2mg Then the doc said i would have to do blood tests for lack of iron .before she increased. Which i know for certain i don't have a problem with. The main thing is the side effects from ropinirole at 2mg were awful sickness and forgetfulness ... Plus luckily my symtoms arent too bad recently. Maybe if they get as bad as they were 4 months ago then i will go back to ropinirole..
how do you know for certain that you don't have a problem with "iron"?
With RLS the issue is the Ferritin level, shihc shows how our body stres iron. the iron serum test is totally different, so even if you are not anemic, your body coud be storing it incorrectly. That helps some people, getting tehir Feritin score up. ALWAYS, for everyone, check and get blood tests done before just starting iron. Iron overload can literally kill you, so if you don't need it, you shouldn't take it.
Hi I take 2 of Mirapexin 0.35mg (0.5mg) at about 7.45 each night. But my symptoms have already started by 6.pm if I am sitting down. So for most of the evening I stand and rock back and for or go for short walks, just sit for very short times. Bed by 10 and up at 5am great...
Margaret/Cardiff
The answer to your question isnt easy to reply to, because everyone is different when taking the meds. Because someone has good results doesnt mean another person will.
When someone has bad results that also doesnt mean someone else will.
Its trial and error, all you can do it try each med and see what results you get.
I think what harecatcher was trying to say is , you can get augmentation when taking the dopamine agonist meds which are Ropinerole, pramipexole and the Neupro Patch, augmentation is when the medication stops working, the RLS symptoms come earlier in the day and doesnt work so well at night, or even stops working at night, the medication turns against the RLS.
But as you have asked, i use the Neupro Patch, i am using the 2mg patch at the moment.
Side effects have been for me, headache, nausea, dizziness and sleepiness. most have gone over time.
This doesnt mean everyone who uses the patch gets those side effects. or the same side effects. That why i say, its trial and error, we all react differently,
All you can do is see your doctor and have the list of meds that are used for RLS.
Irene.UK
thedragon• in reply to
Thankyou
nightdancer• in reply to
Thank you, Irene!! We can type until we are blue in the faces. Like I can say opiates are the only thing that stop MY RLS with great success. That may not mean that will work for everyone. BEST PLACE TO GO where all info is on one page is rlshelp.org all your info is in one place. You will only get more confused if we all write in and say what we are on, how it affected us, etc. My post would be 2 pages long. Does anyone from thi site actually go there and look at the treatment info? Irene and I have posted that site a million times. It is your best help, besides personal experience, and listening to people who have been dealing with rLS and meds for a looooong time. You said you are getting confused? Well, RLS is confusing. What works for one does not work for the next person, so get a list from that web site of all meds to try, look them up and make a list from there. I swear, that in this case the web site will be more helpful than us if you are trying to be organized. :o)
BUT, I use Vicodin, morphine, Clonazepam, prescription sleep med, plus 2 antidepreaants that I never needed before I got NO sleep. Oh, and blood pressure meds. all of them together help me have a fairly normal life at least half of the time.. so, there you go. still confused? :o)
typos! arrrgghhhh! That is "antidepressants" above.
hi, im taking Mirapexin, the prolonged release one, at 1.05 mgs, once at night, its working ok for me, allthough if im stressed i can garentee it doesnt work very well.
Ive used the neupro patch also, until i got to a very high dose and decided to change meds.
Ive used ropinerole, (also called Adartrel, and Requip ) Im not aware of these 3 meds being slow release though. i didnt get on to good with ropinerole it makes you very nauseus,
And as Irene said, we all react different to meds, so i think its got to be a case of " try it and see", hope you get on ok with whatever drug you have.
Jean-Birmingham - uk
harecatcher• in reply to
Requip XL is slow release ropinirole. I once tried them and still have the box
• in reply toharecatcher
yes, i remember that one now !! thanks, so many its easy to miss one out 
I have had RLS for a little over 3 months, it started suddenly, and was very severe, with pain and urge to move legs all the time but much worse at night and evenings. I was already taking tramadol, and diazepam for spinal problems, and my doctor prescribed pramipexole 0.088mg 2 at night. within 2 weeks he upped it to 3, one in the morning.
I am now taking 5 per day, 1 morning 1 lunchtime, and 3 at night for the last 2 weeks, so farthis has calmed every thing down, except the pain.
I can feel symptoms coming back,and he said I am on the highest dose now, so what next? I am off to see a neurologist end of the month, so we shall see. best wishes Caz
nightdancer• in reply to
Mirapex is stronger than Requip, for one thing. Your dose is getting too high. Please go to rlshelp,org for complete info on all RLS drugs and treatments on the treatment page, which is run by an RLS specialist. When one is asking,what now, it is tie to check out the whole list of drugs that are available. Read it, take notes, etc. It will give you any info you need to know as far as treating RLS. Remember there is no cure. The neuro should help, but you have plenty of time to do some reasearch on your own before that. :o) Knowlwedge is power.
• in reply tonightdancer
thank you for the feed back, I have been on the site but just din't really know then much about this, I will go back and have a look.
nightdancer• in reply to
the more you read the more you find out. :o)
I put on 2 x 2mg Neupro patches at about 6pm as they take 5 hours to work and patches on at night. I also take 1/2 a 1 mg Ropinorole at a time during the night as they only take an hour to work. I don't like to take more than 1 1/2 Ropinorole as they make me groggy in the mornings and edgy during he day, also they give me insomnia. Good luck.
I'm on two 0.088mg (0.17) taken an hour and a half hour before bed. I had mild headaches to start with but only for a week or two. I sleep OK but now get syptoms in the afternoon (augmentation or could it just be the RLS getting worse with time?) so occasionallly take another one early on if I need to sit still in the evening.
I suppose that some of the differences between folk is down to other health problems and other drugs taken alongside RLS drugs. I'm lucky that I don't need any other medication.
Mirapexin 0.008 and 0.18, Adartrel 0.25.
I take these according to how I feel, and try and predict an attack This way I hope prevents augmentation. Should I have taken a combination of these, and still have a bout of RLS, I would take another, dependant on how bad it was.
Having said all of that I have a combination of other meds for osteo-arthritis, osteo-necrosis, muscular arthritis to name a few. These mads are, Zapain, DHC, Amitryptyline,Citalopram,Gabapentin. and Dicloflex, so with all those meds for severe pain and the RLS, Life if just about bearable. So....C'est la Vie!!
Why do you take Amitryptilene? just wonderin? Want to make it very clear here that that is a tricyclic antidepressant, and 99% of the time will exacerbate RLS. Just making a point that Darcy is extremely lucky that he can take it at all. maybe the other meds are counteracting it. :o)
Darcy, as you probably know the Amitriptyline and the Citalopram can have a negative affect on rls symptoms.
I take ropinerole 4.5mg spread over a 24 hour period (I have rls 24/7) and have been taking it for about 5 years. I also use 200mg tramadol over the 24 hour period. This does not quite do the trick so I also supplement with co-codamol 30/500. Officially the co-co is for my neck and shoulder but they aren't so bad now, I just continue to get the script as they are so useful for rls.
I also take amitriptyline for fibromyalgia, and citalopram. As I said to Darcy these aren't very good for rls - and this could be why I need to supplement with the co-co. But the amitriptyline does help my sleep somewhat.
I just taking a minute to express concern that you may have to take too many drugs for rls because you ARE taking 2 drugs that can harm your RLS health in a big way.. They can be working against each other.
Yes nightdancer ... this matter has been well discussed with my gp and for a couple of years I fought against taking them. The amitriptyline helps fibromyalgia and sleep as does the citalopram. Dr B said that in some cases it is necessary to take a Med that is unsuitable for rls and deal with the possible resulting increased rls symptoms. I'm not aware of any major increase in rls symptoms. Indeed one way and another my symptoms are controlled as best as they ever have been especially sleep.
• in reply tojumpylegs
Oh at last, someone who has contacted Dr.B and got advise from him.
I agree that some the meds you take are what most of us wouldnt touch with a barge pole. But if you are doing ok on them, then thats all good..
you are very lucky, my friend.
I use 2 x 2mg Neupro patches. I started on one 2mg patch but after 12 months it came back with a vengeance and started much earlier in the day. I have only been prescribed these and never tried any other form of medication as this one seems to work. I do have problems with prescriptions for the patch. My surgery have refused to prescribe it for me as it is too expensive for their budget (They suggested I tried using aspirin!!) At the moment I am having a hospital prescription for it for the specialist but there have been mutterings that this may need to change. Fingers crossed we can come to some 'helpful' conclusion to that!!
Up untill a few weeks ago I was taking 3.5mg Ropinirole when my legs started to kick at about 9 o'clock and I would go to bed at about 1pm and not sleep untill about 5am. Taking four or five codeine at bedtime would sometimes allow me to sleep but I would be so tired the next day I would be forever falling asleep. Not a happy situation although I stuck with it for months. Then a few weeks ago I had to see my GP about something else and he suggested I have an iron blood test. The results were that my ferritin levels were good but my iron was very slightly low which was nothing to worry about and he would keep a regular check on it. I decided to buy some low dose iron tablets (14mg iron and 80mg vitamin c. 100% RDA) and on the second day I can honestly say that I felt a million dollars and I slept for nine hours after going to bed at 11 o'clock. I had not slept like that for years and I still sleep every night for at least eight hours and I have cut the Ropinirole down to 1.5mg taken at about 8 o'clock. RLS has been proved to be caused by a lack of dopermine and iron and although my iron levels were medically OK a little bit extra has made my life almost normal.
If your iron tests are fine, you should not be takinf extra iron. google "iron overload" and see what I mean. I had iron infusions done, so I studied up on overload, and that is more dangerous than being low on iron. When they are giving infusions , they actually check you into the hospital (in the US) to make sure they are not overloading you, and they put it on the slowest drip. Iron overload is nothing to mess with, so if your iron is fine and your Ferritin is fine, you have no need to take extra iron. It seems I have to address this every day in one place or another.:o) But, I cannot stress it enough. since he said your iron is "little low" but he did not put you on iron, it can't be that low. At least, keep it at 14 mgs, since that is really low, but would probably not make a difference one way or the other. You will see when you get your blood checked again, but you should ask your doctor about that iron and whether he thins it is a good idea. Just be aware. ;o)
• in reply tonightdancer
I just want to read one post without your comments raining on everyone's parade. It's going to drive us nuts. I think your honesty is more so "negativity" and you are dashing hopes of everyone who comes across your posts. I needed to take a several month break of reading any posts on this site due to not being able to ever escape that! Just once! If iron helps, man, figure out why and go to town with it.
• in reply to
Why the aggression on a post from 2 years ago...??
• in reply to
It does not matter when these posts are written, as they are all the same...2 years ago, two days ago, I've seen them all. Just wanted to voice that the site has mostly been ruined due to it.
• in reply to
I am sure many on here would say differently. You can disagree with what someone says, but do it in a nicer way.
• in reply to
You obviously have a grudge against a member.This site is to offer help, advice ans support to each other not for vendettas.Many people are at breaking point by the time they find us and do not want to read about members settlimg scores.The fact that you have just left the site after your comments shows this is what you were trying to do
Oh Crickey...the list is long. I started on Gabapentin and apart from the usual, nausea, headaches and dizzyness. I thought I was fine on it but I became really aggressive towards everyone so I changed to Pramipexole. It was fine for about a month and then the symptoms came back, and we just upped the dose until I couldn't take anymore. Then I was put onto Pregabalin, but that was the same as the Pramipexole, just kept raising the dose until I had to stop taking it. I then went onto Ropinerole, which I am still taking now at a 4mg dose, but interspersed with Gabapentin at currently 900mg a day. This is no longer working for me but I may be suffering augmentation. I have found that all the meds I have taken have reduced me to being as dumb as a box of hair.
See, this thread is not confusing at all, is it, dragon? :o) I hope we heloed some, but you really need to look some stuff up so you have what SHOULD be the correct dosing info. everyone here on meds is pretty much doing their own thing after they get their meds, trust me, me included. It is all trial and error, at best.
I take clonazepam and gabapentin. I'm taking more than my doctor has prescribed for me. I have to be very careful with my prescriptions sneaking in an early one now and then by saying I'm going away then asking for another a month after that. I don't always take a lot. sometimes I'm OK on just 2mg clonazepam and 900mg gabapentin. I also find if I take some early in the day, say about 3 O clock it helps. Last night was a really bad one and I took 7mg clonazepam. That's 14 tablets instead of my prescribed 4. Today I feel like I have a hangover but that's just the price I have to pay. I've read up about the meds and it seems that it's almost impossible to overdose on clonazepam. However it's lucky that I don't drink as then I think I really would be putting myself in danger.
I tried the Ropinerole (Requip) but it just didn't work.I haven't tried any of the alternatives because I'm scared of giving up the clonazepam. I think just one night with uncontrolled RLS would send me over the edge. I'm not sure I could cope.
Well after reading everyones input on what they take, how they take it, when they take it. Nightdancer is absolutely right....and has echoed more or less what my comment was to the dragon.
So do what me and she has said, get the info on RLS meds. and just take them with you to your doctors and go from there...
Thankyou to everyone who has replied. I had looked on that website but hadn't seen the treatment page . All I saw was a lot of letters and answers. So sorry for not being aware of that page. It's been really helpful to hear individuals experiences and to have it all in one place. It's really made me think about all the various drugs and I am feeling that I would prefer to take painkillers to stop my rls rather than cope with augmentation problems and swapping and changing drugs all the time. I know there are problems associated with painkillers that too . But many thanks to all of you who have taken the time to reply.
Also its generated quite a good discussion.....!!!!!!!
Or the menu is across the top under the name of the web site, and treatment is off to the right on the top bar. It is in yellow. ;o)
the dragon:
This is the link to the site.
If it doesn't open onto the Treatment Page then look on the left hand side where is a list and one of these is RLS/PLMD Treatment Page.
I'm taking 3 x Pramipexole (.088mg) an hour or so before bed, and my legs stay still all night. After 30+ years of trying different remedies (prescribed, herbal, dietary, etc), this is nothing short of a miracle as far as I'm concerned.
However, everyone is different and - as is the case with most conditions - what works for one person may not work for another. It's all trial and error. I just hope that it doesn't take as long before you find something that works for you
Have tried ALL the above, ALL with side effects and All working well for a while after which the dosage must be upped. PLEASE BELIEVE ME when I say that my RLS is GONE!!!!! Thank GOD. What I use is 2-3 700 mg. L-argenine (from the health shops - no prescription needed) early morning and 1/2 of 10mg PAX (generic of Valium) prescription needed - directly before bedtime. Sleep like a log. No side effects. As wide awake well rested and fit as a fiddle (66 years old and have had RLS for 27 years). According to my GP the meds are VERY safe at the dosages that I use. You can start off with up to 5-6 of the 700mg L-Argenine and 10 mg PAX for the first week and then work your way down to a sustainable level. Good Luck and GOD bless.
I was given Diastat, which is Valium gel as an enema for several nights and it stopped the RLS completely, and I want to ask my doctor to continue with this, sadly there is a major campaign against giving anybody Valium now.
Krappie, I'm so happy for you. I hope that it continues to work well
for you. How did you come up with L-argenine? Just curious..
Ropinerole first, then 1 parmipexole 0.088mg, then 2 which doesn't work now either. I get the need to move my legs and now arms, and shoulders and wrists. I dont get the creepy-crawly feeling. Cut out all the usual food. The parimpexole now gives me weird and very vivd dreams that I wake up in and just watch, knowing I am asleep and awake, soI do not want to increase again. Weird. Also take codene for back pain.walking / excercise doesnt make any difference. While I was on holiday, a lady gave me a diazepam jelly enema, and then put in a medical glass retention plug afterwards, which I had to keep in. I had to sleep on my front each night, but it worked very well.
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