I’ve had loads of advice from this site and I’m still seeking it. I’ll give you a quick synopsis of what I’ve been going through and where I am now.
I have had RLS what seems like forever. I took Ropinirole for 10 years, went through augmentation, developed a gambling problem and managed to get off Ropinirole, all this resulted in my marriage breaking down and I am now going through a divorce. The hardest thing I had to do was to come off the Ropinirole and try and contain my urges to gamble which was totally foreign to me. In the last year alone I have seen my doctor 19 times and have seen 3 different neurologists.
Which brings me up to date. I saw the last neurologist last month, a very nice lady who out of all the ones I saw seemed to really understand what I have been through and have a good knowledge of RLS. All good so far but it is what she has prescribed to me is the problem. I have been on Codeine since coming off Ropinirole, I have tried Pregabalin and Gabapentin but didn’t get on too well with them, but if I am honest I don’t think I gave them long enough. Unfortunately I am now almost paranoid with taking another drug because of the side effects I had taking Ropinirole and I don’t want to go back to that very dark place again. I know I have to come off the Codeine but what do I take to replace it. The neurologist prescribed Madopar 100mg/25mg prolonged release hard capsules, from what I have read it seems to be for Parkinson’s not RLS. I am not going to take any until I have heard back from the very knowledgeable people on this site first.
On the extremely good news is the urge to gamble has gone completely, I am over the moon with this as it just wasn’t me and caused so many problems. To this day my husband (soon to be ex husband!) never believed me when I said it was the tablets that was making me do it. My neurologist when writing to my doctor said that Ropinirole caused me to get severe dopamine dysregulation syndrome.
Currently I take just 2 x 30mg Codeine Phosphate a night and never go over this amount. My legs have calmed down so much since Ropinirole and each day that passes I see a slight improvement. I’m still waking up at night, a miracle hasn’t happened!, but my legs are not so intense and I can get back to sleep a lot quicker. What I’m saying is I can cope with it, I know it’s never going away and this is the best I think, that I’ll get. So if you kind people tell me not to take Madopar I won’t, I can’t carry on forever with the Codeine so what should I be taking!
As before, I’m grateful for any replies as I know it comes from people that are very knowledgeable being fellow sufferers.
Thanks x
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Scattypatty
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Damn, Patty. You're the second person in a few day fir which the neurologist has prescribed Madopar (levodopa is the generic name) after augmentation on ropinirole. Levodopa is a precursor to dopamine and has the highest rate of augmentation of the various dopaminergic medicines. The general recommendation for its use is only for incidental use for patients without daily symptoms, e.g for a long trip.
I urge you to thoroughly inform yourself and aak many questions to your neurologist. It may be most helpful to rely on tue various NICE guidelines. Aa I am not in the UK, I cannot access them or paste the link. Please find recent posts by Manerva, he usually includes those links in his replies about dopaminergic drugs and augmentation.
I am very sorry that this nice neurologist doesn't seem to be up to date. But maybe she is open to getting educated. I think/hope it shouldn't be too difficult to make her understand that augmentation and withdrawal was horrible and that you don't want to experience that ever again.
Good luck. Keep us posted and don't hesitate to ask more questions or info or whatever help you need.
I appreciate what you are saying, I must say it didn’t seem right to me. It would be good to hear from somebody who has taken Madopar for RLS to see what side effects, if any, they had.
I hope Manerva does reply he is so knowledgeable, and has given good advice before.
Thanks for your input, I will certainly take your advise and get a bit more knowledgeable.
I absolutely agree with Lotte. I despair of neurologists. Madopar will cause augmentation and you’d have to go through hell again to get off it. Avoid like the plague.
Also please consider seeing a lawyer to bring a case against the drug company as the gambling addiction is an Impulse Control Disorder from dopamine agonists. Many people have been successful in obtaining compensation and there was a large class action in the USA.
I agree with all the others re Madopar. Site rule prevent me from giving my opinion on your lovely nice neurologist. ( Do these people actually get money for giving out injurious prescriptions?)
My question is why do you wish to get off the codeine, presuming it is relieving the symptoms? You say you feel you have to give it up--- why?
It is a very low scale opioid, and if it's doing a good enough job, then good.
I know it's more addictive than many- that's why I am afraid of it- I had it once ,and quickly realised I liked it too much. If that's your situation, I can understand.
She was nice, honest! Just didn't know what she was talking about.
Regarding the codeine, I have just requested a repeat prescription and got a call back from the receptionist. Apparently my doctor noticed I had been on them for some time and questioned why I was still taking them. I'm happy taking them, as I said my legs are still giving me problems but compared to how they used to be, I'm happy. Doesn't codeine affect your stomach when you take it long term? Do you know what, I've never really thought about them, all I know is that they help me sleep, I know I'm going to wake up but that's okay, I've got RLS its going to happen, that's it!
I don't think codeine has any serious effect on the stomach. That would be acetaminophen or aspirin etc. Any opioid will affect the respiratory system and cause constipation, but I haven't had any problems.
Cheers.
Overall, my thought is NO, don't risk taking Madopar.
Madopar, as Lotte says contains Levodopa.
The neurologist may have some reason for prescribing Levodopa- carbidopa as there is some evidence that it can help treat Impulse Control Disorder (ICD). ICD is the term used for the addictive type behaviour caused by taking a dopamine agonist (DA) like ropinirole. The neurologist refers to the broader syndrome from which ICD arises i.e. Dopamine Dysregulation Syndrome.
My reason for saying no is threefold.
Whether or not Madopar can treat ICD or not -
1). It seems your ICD has already improved so why treat it?
2). There are alternatives to DAs or Levodopa for RLS.
3). The risk of suffering augmentation by taking a dopaminergic medicine is much higher than the risk of ICD. Augmentation is more likely to be caused by Levodopa than it is by ropinirole.
Hence, if your ICD is improved why risk augmentation?
Alternatives.
Pregabalin is an alternative to DAs. You have to take it at least for 4 weeks and you may need to take 150mg or more. A GP can prescribe it. Pregabalin does not cause augmentation.
Opiates can be effective for RLS and don't cause augmentation. Codeine is an opiate. Codeine is mentioned in the UK NICE Clinical Knowledge Summary on RLS for GPs.
However, it's not the best opiate for RLS as it's not potent enough hence requiring a fairly high dose.
Targinact, (Oxycodone and Naloxone) is licensed for RLS when "dopaminergic" therapy has failed, which it clearly has with you.
Your neurologist is possibly thinking what's best for your risk of ICD rather than what's best long term for your RLS.
Because of augmentation DAs are not a preferred medicine for RLS, long term. Levodopa is even worse!
Note that under the UK law of informed consent no health professional can coerce you into accepting any treatment you don't voluntarily agree to. They have to explain not just the benefits of a treatment, but also the risks and the alternatives.
Even then, you can withold consent. I have read of people being threatened with it being recorded that they are "non compliant' which is not only abusive but also illegal.
I would refuse to take Madopar on the grounds of high risk of augmentation. Request targinact or a trial of pregabalin.
I also suggest you ask for blood tests for iron deficiency.
Here's a link to information about iron therapy for RLS.
Ahh the legend that is Manerva, thank you so much for your reply. You always go that extra mile with your replies.
I’ve taken in everything you, and everybody else that has been good enough to reply, have said and I’m definitely not going to take the Madopar. At least I have enough knowledge now from all of you to be able to answer why I won’t be taking it. Sometimes instead of seeing the doctor I write everything down and send it to him, that way I don’t leave anything out. I will definitely be doing this so that I can include a lot that you and others have had to say.
You must spend a lot of your spare time, like others on this site, to help the likes of myself, so I really thank you for that.
I am amazed at the side effect of gambling even in patients with absolutely no history of gambling.
From Wikipedia "In November 2012, GlaxoSmithKline was ordered by a Rennes appeals court to pay Frenchman Didier Jambart 197,000 euros ($255,824); Jambart had taken ropinirole from 2003 to 2010 and exhibited risky hypersexual behavior and gambled excessively until stopping the medication."
I know it’s scary what some drugs can do to you. I had never gambled in my life, not even on the lottery, plus I don’t drink or smoke. I have also read of people getting money from GlaxoSmithKline because of the side effects. I wish I had the money to sue them but unfortunately I haven’t.
Maybe there is a pro bono law firm that could help you - the cost could come out of any settlement. A good law firm would see prior precedents as a positive outcome for similar cases - like yours.
Show these legal articles to your solicitor. You will definitely get compensation against both the doctors and the drug companies. You can find a no win no fee company or use one of the companies in the articles.
Having looked through them- we need to make it clear to all members on here that their neurologist and GP is behaving negligently if they fail to warn us of Impulse Control Disorder.
There is a clear case for negligence and substantial damages can be obtained.
PS I’m a retired lawyer ( although litigation was not my area of specialisation).
Thank you so much for that information. The only advice I got from my doctor when I first told him about the gambling was for me to get in touch with Gambling Anonymous, never once did he advise me that it could be the tablets. Thank God for this Forum because everything I now know is because of the brilliant people on this site that use their own time to help out the likes of myself. The very worse thing about going through what I have is for people not believing what you are saying. I’m 75 years old, I have spent all my life never once giving gambling a thought, to not be able to get it out of my head, that told me something was wrong. Then not to have the doctors or my husband believing me is shattering.
I will definitely be showing these to my solicitor and thank you for your time.
Can I ask a question? Although my doctor failed to tell me about the side affects of Ropinirole it does tell you on the Patient Information leaflet. Does this mean that it isn’t on the onus of the Doctor but on the patient to make sure they read the leaflet.
No- otherwise the woman referred to in the case ( link above) would not have won. You mention that you have seen several neurologists over the years. They and your GP should have picked up on it- especially the GP who said you should visit Gamblers Anonymous. You are the patient - they are the medical professionals. It’s their job and duty to treat you and advise you and there were several red flags they should have picked up on.
Hi there. Just thought I’d add my 10cents. I’m slowly weaning myself off Premi. My doctor (not the one who prescribed premi) has given me madopar 50mg/12.5mg soluble tablets to get me over long trips etc. I have to take two but the relief only lasts about an hour and half to 2 hours and I rarely take it. Being soluble it’s fast acting.
It’s a god send in an emergency but I can’t imagine taking it regularly.
Thanks for your input, always appreciated. I often go to Australia (not at the moment!) which is always a nightmare, so it’s good to know they would help with the journey.
Wow, I've heard about the Madopar action, and I know it really helps. I was also a very gambling person for a while, and I would hang out at a casino in my city, lose at roulette, and give away the last money that could have been used to pay for utilities or rent, you know? People realized that I would soon have nothing to help, so they just offered me a lighter version of the casino, and I began to play on slotsformoney.com. At least here, I don't play anything super unprofitable. I earn money and calm down. This has been going on for six months. I play quietly in my spare time.
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