why has my tablets stopped working???

[anettie1976]

I have recently been put on roprinerole 4mg modified release, and now they dont seem to be working very well at all!!!! I seem to be having more bad nights but I cant go onto a stronger dose as im at the max dosage for these tablets according to my doctor. However, he has put me on Amitriptyline 10mg every night but they dont seem to be working either!!!! Can anyone suggest anything as ive just bout had enough of this as it seems to be affecting not just my legs now it seems to be affecting my upper body too

[Hidden]

When did you start the Amitriptyline..?? That med is known to cause worse RLS symptoms. So, it could be the reason that your Ropinerole isnt working....

[anettie1976 in reply to Hidden]

I started the ami about 2 wks ago now because my legs were gettin worse and the roprinerole seemed not to be working.....

[nightdancer in reply to anettie1976]

Amitryptiline made my RLS sooooo bad I was literally suicidal. It is a tricyclic antidepressant, and is tops on the no no list for RLSer's. It and SSRI anti-d's. That is 99% of the time going top make to your RLS worse, and not all people can take Ropinerole. rlshelp.org has a complete and updated list on the treatment page for "Drugs and Foods To Avoid". It is important to know what prescription drugs we should stay away from, or be aware of what they can do to us. Please read it. Also, see other meds used for treating RLS besides the dopamine agonists like your ropinerole.

[Hidden in reply to Hidden]

Elisse, I am so grateful to you. I would not know this stuff if not

for you and Nightdancer. I keep going to the rishelp.org

but it's so much quicker running it by you guys. Love ya! =)

[Hidden in reply to Hidden]

Hey thanks Yikes. Glad that myself and Nightdancer has helped you. We dont mind at all if you run to us.... if you prefer the personal touch...LOL..

[Hidden]

Amitriptyline sent my legs sooo crazy, not a good med for us at all

[anettie1976]

I was on ami a long time ago for my legs and it seemed to work which is y my doc has put me bac on it now!! I feel as though its the roprinerole thats not working for me at the moment!!! Im not sure if my doc would or know bout wat other meds are out there for me to try!!!1

[nightdancer in reply to anettie1976]

see my rely above about amitrypitiline, just FYI.

[Hidden]

How long is recently that you have been on the Ropinerole, did you have to keep upping the dose to get relief. Just trying to see if i can find the reason that its not working, It could be you are suffering augmentation...

[Hidden]

Are you in the UK, you can look at the NHS Choices website it will give what meds are available in the UK for RLS... You can then tell your doctor or show him, if you think you may have to change another med. But your doctor should know what meds are available, it will show him in his med bible. that is a doctors book that they refer to...

[anettie1976]

yeah i know n yeah im in the UK i was actually diagnosed by the hospital coz my doc kept sayin its in my head n i just kept goin at him sayin that it was rls. I was put on roprinerole (normal one not the modified release) 2mg to start of with then i upped it to 4mg which i was on that dose for bout a yr or so i think, n then i went bac to my doc sayin that the tablets didnt seem to be as effective as they first were, so he got in contact with the hospital again n they put me on the roprinerole 2mg modified release then upped it to the maximum dosage of 4mg 2 weeks later n that was bout a yr or so ago!! I'm at my wits end with this luckily for me my partner understands me as he suffers wiv something called Cluster Headaches so he can see where im coming from with the pain n moving all the time especially in bed. If he wasn't so understanding i would be very alone in this big horrible world!!!!!!!!!!!!

[Hidden]

4mgs, ! 3mgs is supposed to be the highest dose for rls, any higher and your getting into parkinsons disease dosage ? soo yes could be augmentation, especially if its starting earlier in the day

[anettie1976]

what even with the modified release roprinerole!! it was the hospital that put me on the higher dosage!!! the thing is ive always had the restlessness throughout the day its not just confined to the evenings with me n its gone into my upper body aswell i have wat i call little ticks my head jerks n my arms ave a mind of their own!!!! I hate this i just dont know if im comin or bloody goin!!!!!!

[nightdancer in reply to anettie1976]

4 mgs is the high dose in the US, but they may have lowered it in the UK. It is not uncommon to see people on 4 mgs, that is the max.

[nightdancer in reply to nightdancer]

highest for RLS. Parkinson's patients can take much higher doses.

[Hidden in reply to nightdancer]

i seem to remember somebody on here said their doc pushed them up to around 8 mgs of it, had bad is that !! can seem to find it now

[Hidden]

Hi know were your coming from. I,m on 4mgs. Been on 4mgs for years and now have to take them earlier on in the day. I,ve started to 1/2 mine during the day so they last bit longer. I know I,m suffering from augmentation but to scared to take a drug holiday as my doctor suggested. Imagine a week of not taking anything, think I,d go mad. Interested to read your on amitriptyline as I take 2 of these every night, wondering now whether to stop them! Or maybe take them of a morning when I,m more active????

[nightdancer in reply to Hidden]

please see my reply above on Amitriptyline and the web site to read 'drugs to avoid". ;(

[Hidden in reply to nightdancer]

Have read your reply thanks night dancer . Have cut the Ami down to 1 a night and will slowly wean myself off them, they were given to help me sleep but after reading the" drugs to avoid" wish I had never taken any. When people say they take painkillers during a "drug hol" which ones because over the counter tabs do nothing for me............?

[Hidden]

I dont know what the dose is for the modified release ropinerole. but it does sound like augmentation to me. So, the only thing is a trip to your not so good doctor, and take the info of meds with you.... hopefully your doctor will give you a different med. The higher the dose of any med can result in more side effects. the fact that you are experiencing worse symptoms, also points to augmentation.

Good luck with your doctor, let us know how you get on...

[Hidden in reply to Hidden]

think its the same ive used both now

[Hidden]

Drug holidays can work mostly. Going cold turkey is not something i would want to do either... Alot of people take strong painkillers while doing a drug holiday, its not perfect, but it helps. Are you taking the ami for your RLS or for depression. and you cant just stop them, you would have to wean off them...

[Hidden in reply to Hidden]

Think I really need a drug hol but what painkillers would you recommend as my doc just says "no drugs at all for a week" easier said than done... I take the Ami to help me sleep as prescribed by my doc! Am weaning myself off them after all I've read.

[Hidden in reply to Hidden]

drugs holiday do not work for all of us, its supposed to reste you meds, but in my case its never worked

[Hidden in reply to Hidden]

reset your meds

[Hidden in reply to Hidden]

As strong as your doctor will prescribe, something like Morphine, to take for at least a week or two. And as Tallula has said drug holidays dont work for everyone. Trial and error, just as it is for the RLS meds. The idea is to get the dopamine right out of your system, then try again, usually at the lowest dose, then work back up slowly or until you reach relief.

[Hidden in reply to Hidden]

If your in the UK, I i think you may have a bit of a struggle getting a doctor to give you very powerfull meds for this, surely they are for terminally ill people, things such as morphine and oramorphe and such meds,ii will be waiting to hear how you get on Daisymay

[Hidden]

hi, i know how you feel, we are stuck really, and until we get more research and proper meds for us, its just us going round in circles with meds that were never made for us, one says this one says that, and we are on a never-ending merry - go-round, life sucks sometimes, i have a freind gets it as bad as you, i know i could not cope with it as bad as you Anettie, you have all my sympathy and i hope you find something to help, for the odd few of us, dopamine wont work, and neither will the opiates, so were do you go from there, hell and back really , so hope they find something to help you x

[anettie1976 in reply to Hidden]

yeah me too im sick and tired of being like this!!! apparently i was beating ma bf up last night with ma arms in ma slp but he wont wake me up as i normally cant get bac to slp coz ma legs then start to kick of!!!!!

[Hidden in reply to anettie1976]

Anettie, it sounds as if you have PLMD aswell as RLS.

[anettie1976 in reply to Hidden]

What is PLMD pls x

[Hidden]

I agree about the meds. i have always said we have to borrow other meds that are meant for other illnesses. No one has worked out any meds just for RLS. Which why we will eventually get stuck because we have run out of options. especially the dopamine ones, cause they eventually stop working, whether that be after a few months or a few years. Yes, the opiates are not for everyone either, i for one cant take them, as they send me to sleep during the day..

[Hidden]

you to Elisse ? they turn me into a zombie, just cocodamol i can cope with, nothing stronger though

[Hidden]

I cant even take co-codamol, or even the smallest amount of codeine.. its stays in my system the next day for some reason... If for any reason i had surgery that required pain meds after gawd knows what i would do, i would have to grin and bear it, or just sleep all day...!!! LOL.

[Hidden in reply to Hidden]

oo not good for you then

[Hidden]

Hi Anettie. I was like you a year ago, on Ropinirole, which didn't work anymore. I had to keep taking more until I went over the presribed doses. What happened then was "unbearable". Not only did the drug stop working, it went into augmentation, making the symptoms much worse, at the same time making me feel absolutely terrible. When my doctor refused to change medication I went elswhere for help because I was so desperate.

I wrote to rlshelp.org and asked one of the doctors there for advice. With a print-out of the advice given and my daughter along my side, we went back to my doctor who quickly put me on Pramipexole. Such a relief I can't even describe. I was able to change from one drug to the other right away, which seems a bit unusual, but it worked in my case.

Good luck with it! I hope you get some help real soon!

[nightdancer in reply to Hidden]

I am glad you wrote to him. It is one doctor that answers all the emails. He is a busy man! I have known him, and he has helped so many, for over 16 yrs.

[anettie1976 in reply to Hidden]

yeah me too ill have to make another appointment to see ma gp to see what he says bout this

[arwyn]

I was on ropinirole for roughly three years increasing the dosage from 2mg to 6 mg and even taking 10 mg in desperation when the legs were very bad. Like you I found that over the years the drug did not relieve the rls. Fortunately for me ii have a GP who suffers with rls so is very sympathetic. It was when I had shingles and was prescribed gabpentin - neurontin 300 mgs that I read that it can be used for rls. My doctor was not aware of this drug being used for rls but did allow me to try the drug. As previously advised in this site the drug works for me not only do i not get rls at night I am sleeping very well. I take 300 mg three times a day. Do ask your GP if you can try Gaba and hopefully you will find relief from this awful condition.

Hope it works for you.

[Dollis]

What a mess we're all in! Here I am, weaning down from 40mg Amitriptyline so I can get on to Ropinirole for the first time in the hope I'll get some relief on that - and there are you Anettie going back the other way! I'm new to this site but the more I read the angrier I get that we are at the mercy of GPs who know less than we do about a condition which causes so much misery to so many. I am sure we would be a force to be reckoned with if we got together to lobby for proper research but how you go about that I don't know. It's all about funding I suppose but if its such a widespread and common condition, surely some drug company could make money out of us! It would be great to put what little energy we have into trying to change the status quo - anyone have any ideas on how? Meantime, Anettie, you are not alone, we are all walking together!

[nightdancer in reply to Dollis]

There is plenty to do to raise awareness. The first thing is to educate the doctors who keep handing amitriptyline over there in the UK, and over here in the US. We have too educate ourselves or we are screwed, in plain language. look at that list of drugs to avoid on rlshelp.org (treatment page) This is what many of us have dealt with with doctors and DUH's-deliberately uninformed humans" (saw that on a blog), letter writing campaigns and on and on. Believe it or not, it is much better than it was back in '97, but we still obviously have a looong way to go as far as understanding. The "regular" doctor spends 6 hrs on sleep disorders total in med school. There are over 100 sleep disorders, so not much knowledge there. We have to find doctors who are interested in knowing about RLS, plus sleep doctors know more, and neurologists SHOULD know more. It really depends on the doctor, and how they view it, so we have to know what is what when it comes to RLS, and not be afraid to speak up. off my soapbox now. lol

[jitterbug]

I can only reiterate what has been said. It is all about the balance and if you started with 2mg that may have been too much! Increasing the dose could have made the RLS worse?! I use the 2mg neupro (rotigotine) patches (although it says not to) I spin each one out to about 36 hours as I have found it works far better) as well as 2mg ropinerole at night.. I no longer get RLS in my arms! I have also started taking magnesium which also seems to be beneficial for me.

Unfortunately it is very individual and most doctors do not really understand the drug/effectiveness properly. More is definitely not better.

Good luck and keep us posted!

[jitterbug]

Just a quick adendum - I was put on Gabepentin as well as the 2mg ropinerole and neupro patch. I had one day of NO RLS and thought I had found the holy grail. After that RLS went into free-fall and I nearly cracked up! Stopped taking the Gabepentin and better again. Frustrating but really worth trying the less is more approach ....

[tarrybell]

Have you tried Quinine Sulphate tablets? I was prescribed them for night cramps but found that they helped the RLS.

[nightdancer in reply to tarrybell]

For the US, I will just say that the warning out on Quinine now by the FDA (drug admin) says it is 'to be used for treatment in Malaria only". just an FYI. fda.gov

[Rubylane25 in reply to tarrybell]

My mom and dad both take quinine for night cramps. I have tried it for RLS and it didn't work at all. In Canada Quinine is given out frequently for a number of things but my pharmacist said it could cause hallucinations so beware of that. My mom started getting them a year or so ago and the are just now starting to go away!

[nick-the-turk]

the same happened to me one doctor put me on amitriptyline 10mg nearly drove me insane seen another doctor and took me off them with advice from neuro-surgeon after trying nearly all meds i.m now on iron tablets and pramipexole 0.26mg prolonged release twice daily and getting a little relief [some is better than none] [not enough to start getting back to sharing a bed yet ]but getting somesleep

[anettie1976]

cheers for all the information im going to take some of the names of the drugs that was said on ere to ma doc to see wat he says bout this. laters guys n thanks again xx

[Rubylane25]

Requip and other drugs like it often stop working or you have to increase your dosage. If you go off the drug for a few weeks you can then start over and it will work again. It is called the rebound affect. I I'd that often hen I was on Sinnimet but have rarely had to of it on mirapex.