Morning rls sufferers

I have had rls for 45yrs it's worse as the years go by,I have had all the Dophamine tabs and am now on Ropinarole ,with codine if needed for the pain in legs,what I want to know is how many tabs you can take without getting augmentation, at the minute I am on 5tabs of 0.25taken through the day,been up all night so something isn't working, always nice to read peoples probs Beady 3

18 Replies

  • Is it just the one night you have been up or has it been more than the one night. Sometimes we never get 100% relief and experience blibs. Augmentation can start at any dose, low or high, but a higher dose is more likely for augmentation to start earlier. The new recommended dose for Ropinerole is now just 1mg. Usually with augmentation, RLS symptoms start earlier in the day, can start to affect other parts of the body, as in, arms and body. RLS is a progressive condition for most of us.

  • Thanks for reply about ropinorole dose,I have read on rls web site that 4mg is final dose,so where did you get information from, Beady 3

  • I got that info from Dr. Buchfuhrer on a webinar he did. He is a RLS expert in the USA. If you need to know anything about anything to do with RLS he is the one to contact you can email him and get an answer 24-48 hrs. His website lots of info on the meds and lists on what to avoid etc etc. The blood pressure meds are the only ones to disregard as they were found not to be very successful for treating RLS. All websites will still list 4mg as the highest dose, as the new recommended dose has only been stated recently. Augmentation is a BIG deal for people with RLS, so many doctor's up the dose not knowing they are doing more harm than good.

  • Thank you for replying. I will email him later and see what he says,and let you know. The rls is bad enough without making it worse. My doc askes me what tabs I need as she doesn't know a bought it,I will keep going with the 5mg a day. Any more help and I am ready to listen. beady 3

  • Hi Eliisee yea mine is getting worse In my legs ,arms , fingers , and moving to my back x

  • The problem is that 1 mg very often doesn't work, so what do you do then.

  • If 1mg is not enough, then either you change to another med or add another med to take along side it to see if it works. I dont know all the answers. If anyone wants to know more than i can tell them, then email Dr. B ask him what you would need to do if 1mg doesnt work. :)

  • Sorry gang but I got I wrong, I am not on 5mg I am on 5tabs 0.25 which makes 1and a quarter. Been up since 1.30 took sleeping tab and had codine don't seem to do much good Am thinking about cancelling my holl in a months time. Beady 3

  • Dont cancel your holiday yet. Try to sort out your meds first.

  • If the dopamine class of meds do not work for you at the low dose, then it is just not the right med for you. I cannot take them at all, there are other alternatives. Many RLS experts are now trying to get away from the dopamine meds because of the ease that augmentation can start with. Glad you fixed that 5 mgs, Beady! That is way high, even though I know many people are prescribed the higher doses which will only cause problems down the line. But, the new research now is that of the low dose does not work for you, then you need to try something else. The web page that Elisse gave you has all the treatment info on one page. Are you in the UK or the US or elsewhere? I only ask because meds all have different names in different countries, and some meds are not available in all countries.

  • I really do think all you folks that answer my probs are great,well we canceled the hols as we had no choise ,the walking about at night was more than I could take in a hotel. I really get very desperate up all night went to bed 6.00this morn ,I fell sorry for my husband but he's great as there is nothing he can do. Well it's back to the docs tomorrow ,she won't have a clue so I will tell her am going to mention gabapentin or amatriptyline what do you think friends. Beady 3 I live u k

  • Look at the website i posted for you.. !!! Amitryptiline (sp) is one of the worst meds for making RLS worse.

  • Hi you could try tramadol or alternative to gabapentin which is a bit stronger is pregablin .

  • Do you mind me asking how old you are Beady as I notice you put you have had rls for 45 years? X

  • I am 78 hope that's ok beady 3

  • Hi Beady, why wouldn't it be okay? Good on yer x

  • Iv had all the RLS drugs too nothing works for me 8 years sufferer just on sleeping pills now

  • I don't know how you manage on sleeping tabs alone ,how come when your leg plays up in the morning,or does your leg only go at night if so you ars very lucky

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