Hi As most of you know I run a B&B. A guest has just booked in and asked if she could 'wander' around the house in the night. Straight away I knew why she was asking. Yes she has RLS and gets little sleep. She is on Warferin and has been told that the only med she can take is ropinerole which does not agree with her. She also takes Tamazipam to help her sleep. Does anyone know what she can take, her GP has told her that Ropinerole is the only med suitable for her?????????
Thanks
I am sure someone will know the answer. I cant help with this one. WOW, fancy having a guest with RLS, at least you know exactly how they feel and understand the need to wander in the night.... I hope someone can help so you can past the info on to your guest. You are a very nice B&B landlady, to try to help...
Irene.UK
Irene bless you but I think everyone on this site would help a fellow sufferer. Just found out that this ladies daughter is a Doctor in pedeatrics (sorry spelling not my good point) and get the feeling she does not believe in her mothers suffering!!!!!!!!!
Shame on you, Daughter!!!! I googled and found this post today because I started Warfarin 6 days ago (still in hospital), and have got terribly restless legs. They only bother me when I want to go to sleep at night. Doesnt bother me during the day, even though I am spending most of the time in bed.
I wonder has GP said that ropinerole the only medication suitable for her because of the Warfarin? That the Warfarin would interact with other rls medications. As it happens I googled ropinerole for interaction with warfarin and it came up as moderate and that patients should be monitored if on both drugs.
However, no way is ropinerole the only medication for rls. Ropinerole is a DA type drug and there are other DA drugs, also anti seizure medications and of course the opiates which appear to work for just about everyone (if you can convince your doc to prescribe them).
Codeine can be very helpful and it's possible in an emergency to buy over the counter 8/500 co-codomol which is 8mg codeine tho this is a very low dose.
This link should take you to the RLS Foundation Medical Bulletin. if you go to Table 7 you will find this is about the medications available for the treatment of rls including the advantages and disadvantages.
Of course the Dr. would be aware of the patient needing Warfarin when looking at the medications for rls in Table 7. But perhaps the doctor is not very rls aware and does not realise that all of these other medications can help rls.
Get the feeling her Doctor is not savvy with RLS will pass all these details onto her. At least I will have someone to talk to in the wee small hours for the next few nights!!!!!!!!!!!
Your B/B sounds amazing we should all know where you are!
I love my B&B but am having to move so I can get a decent Doctor/surgery who will prescribe the drugs that I need, drastic I know as I will be unemployed but cannot live without the meds I need.
I take warfarin and my doctor has prescribed Pramipexole for me. I've been on it for a couple of weeks now and it doesn't seem to have affected my INR. It is very effective for me at the moment, fingers crossed it stays that way.
Thanks for the info and good luck
I find it outrageous that you have to move just so you can get a decent GP who believes you. Surely there's some kind of central GP ombudsman (not sure if that's the correct term) that you can appeal to.
What about if you presented yourself at the nearest casualty department claiming sleep deprivation is driving you insane. They may just hand your care back to your GP but if you explained your situation to them they may also send some recommendations for meds with you and your GP would have to take notice of them. Just an idea!!
I have moderately severe RLS and have taken various medications alongside warfarin for many years now, with no problems at all. I have been on Ropinirole and, before that, Gabapentin together with Warfarin (around 3mgs per day). I am now on Pramipexole 0.18mg and take one at tea time and two at bed time and still taking Warfarin. Pramipexole is the best remedy I have had to date. (I have regular INR checks on the Warfarin to keep the dose at the right level, but never any problems). I wonder if there is some other medical problem here that the doctor is concerned about? I occasionally stay in B&B and it used to be a nightmare being confined to a (usually) carpeted small bedroom, but I now take a small supply of Co-codamol tablets with me and take one on going to bed on these nights. It usually gives me a good, restful night's sleep, though I might be a bit groggy in the morning! These must not be taken for more than a few days at a time as the effect will lessen and the codeine content is very addictive.
Further to my reply just given, there is a very readable,informative and comprehensive book on all aspects of RLS written by doctors FOR doctors: "Clinical Management of Restless Legs Syndrome" by three MDs Hening, Buchfuhrer & Lee (Where do these names come from?!) Published in USA by Professional Communications Inc (2008) available on line from pcibooks.com (or Amazon?) Well worth getting a copy for yourself and to give to your GP!
Thanks Johnw
This is absolutely the BEST book of you are going to buy a book on RLS. I have it and it is my "Bible". It has more detal than the ones these doctors wrote for the layperson. It is still easy enough to understand, and has a lot more studies and facts than any of the others on the market. I HIGHLY recommend that. One of the doctors who wrote it is the doctor, Dr. Mark Buchfuhrer, who runs rlshelp.org. he is an RLS expert, who still has an active practice (USA) Dr. Wayne Hening was an RLS pioneer, who used to be a medcial advisor to my groups on yahoo and he sadly passed away 2 yrs ago. yes, give it to yyour GP. It is a bit outdayed as far as meds that have been approved because they wrote it 5 yrs ago, so if you go to Dr. B's web site, the complete list of RLS meds are listed. does your doctor not know how to use a computer? The FDA web site has all drugs that have been approved for use in the US, and all of the same drugs, even the Neupro patch are available in the UK. There are other drugs available to treat RLS besides ropinerole for SURE. All I can say is I would not out up with it.
have been hopping around msgs boards, and Warfarin SEEMS to be a trigger for RLS for some people who take it for a blood thinner. Strange, but cannot find much info on it in my usual sources.
But, I did read that some peple who started Warfarin, actually dveloped RLS after they started taking that drug. I am just going on what other people have told me today. Hopefully will find someting more concrete. and, of course, there are other meds that the poor woman can take besides Ropinerole. That class of meds does not work for everyone, for sure.
Thanks, it started with her when she started the Warfarin. We have both been up most of the night, selfish I know but good to have someone to chat to in the wee small hours!!!!!!!!!!!!!!!!!
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