The latest newsletter from the RLS foundation in the USA states that a recent study has shown that 20% of RLS patients are overprescribed Dopamine Agonists.
sleepreviewmag.com/sleep-tr...
Hardly any surprise to members on here. We see over prescribing (& resulting augmentation) every day on this forum.
I'm feeling quite weary!
There have been so many people in the forum this week suffering augmentation and two signficantly suffering Impulse Control Disorder after only a few months.
Two people being prescribed levodopa,
One poor person suffering possibly augmentation and or DAWS after stopping ropinirole in one week (as advised by neurologist) and put on levodopa instead - even worse than a DA! Neurologist said it "isn't problematic"..
I know Manerva. It is utterly heartbreaking and so frustrating.
I despair of doctors and neurologists.
I really think we need an official letter to the ABN to ask them to get off their lazy asses and actually do something! Send out warning letters.
Aaaghh! I’m beginning to hate them with a passion for their negligence and disinterest in peoples’ suffering.
Sorry what's ABN?
Good idea Joolsg. I'd be happy to help if you go down this route. These so called 'experts' need a kick up the backside. They are doing more harm than good and need to be aware of this. People on this forum are a good example of the long-term adverse consequences of being prescribed. DA's.
This is so scary and sad. However, if you ever visit a neurologist in New Delhi, they'll be oblivious to all this. The doctors are the ones making it difficult for all of us.
Thanks for the link. I have been lucky...so far. My GP reached for the Pramipexole (Dopamine) and gave me that. But being curious, I read up about it as I started my treatment and saw the risks of augmentation. Five years on, I am still on the 0.088mg minimum dose and it is working very well for me. If it does not control my RL enough, I cut another pill in half and that's usually enough. So I always take the minimum. I monitor it carefully; it may yet change.
This is probably disheartening for those who did not get on with a dopamine agonist.
You are sensible to carry on as you have. If you're satisfied that the pramipexole is giving you the quality of life you wish for, then there's no compelling reason to change anything.
There are members of this forum who are quite supportive of pramipexole, some apparently with a passion.
It can be observed however that those are supportive of it have never suffered augmentation. Then it's just a word that has a intellectual meaning, but lacking the experience, no emotional meaning.
It's possibly hard to imagine what your life might be like day on day, week on week, month on month with RLS symptoms possibly many times worse than what they were originally with cumulative sleep deprivation. and the emotional consequences of this. For some life becomes centred around coping with these symptoms.
Not everyone treated with a dopamine agonist benefits from it. I've read that the initial success rate is 70%.
I think that's quite good odds. If there's a 70% chance of pramipexole working for somebody initially it's well worth trying. Sad, that there's a 30% failure rate.
I've also read that 60% of people taking pramipexole will suffer augmentation after about 8 years. Similar odds?
Of the 70% of people who initially receive benefit, 60% will suffer augmentation after 8 years.
I'm not sure what the statistics are for the simple "loss of efficacy" that can happen with DAs even if no augmentation. So for the 40% that don't suffer augmentation after 8 years it may fail anyway. How many won't continue 8 years because it simply failed before then.
This isn't to say that somebody shouldn't be "offered" a DA as an option. It isn't to say nobody should refuse the option if it's offered.
A recent comment from another forum member said they had taken pramipexole for 15 years and had no problem with it. They implied that it didn't matter what dose you took. In fact they had increased their dose several times. That this is a classic example of "loss of efficacy" didn't seem to occur to this member.
This is a significant point. Loss of efficacy or augmentation don't always suddenly happen overnight. They're insidious and creep up on you. If you're not even aware that these can happen and augmentation isn't something you've heard about what would you think.
There is more than one treatment option for RLS, but many doctors only give one, a dopamine agonist. In addition many never even mention augmentation, loss of efficacy or Impulse Control Disorder. There's anecdotal evidence that this is simply because they don't know. Yet in the UK there are national guidelines.
If you saw an oncologist because you were diagnosed with a cancer, they tell you the options e.g. surgery, radiation, chemotherapy or no treatment. They'd give you information about chances of success, benefits risks and complications. You then make an informed choice.
You see a neurologist for RLS, they say take pramipexole, it works. Full stop.
Other options, not given, choice, not given, warnings about potential serious complications, not given.
If a neurologist were to act in the same manner then they would discuss all treatment options, the benefits of each and the risks and complications.
When I first had surgery in 2004, I signed a consent form. On the form it listed the complications, infection, haemorrhage, chronic pain and even gave ststistics e.g. chronic pain 5 - 10%
When I saw a neurologist he simply said take pramipexole. You'll probably have to take if for life.
Furthermore, within the last few days, I have witnessed a neurologist telling a forum member to switch from a DA causing the member an Impulse Control Disorder to Levodopa , which is even more likely to cause the same, saying, it's not problematical. This appears to be medical negligence
Whether you choose to take pramipexole or not isn't a problem. The problem is that people are not being given options and not being given information. This could actually be illegal, law of informed consent. This is something I've witnessed some doctors frequently ignore and get away with ignoring often simply because we are too little informed to challenge it.
It's not disheartening, personally, for me that you're finding pramioexole OK. Since I stopped taking pramipexole I rarely have any symptoms and I never have to take a bit extra of anything.
I am sad however that although it's possible to take pramipexole for 5 years, even 10 or 15 years. For the majority it's not. Plus, they were never warned and never given an option.
Awkward_Fellow... I have been doing similar to you.. using the lowest dose of a DA that I can. I do have some augmentation after being on ropinerole for 15 years. At the start I took 0.5 mg..... I'm now at 2 mg, and on bad nights 3 mg. I know I will have to switch to a different drug but I don't know what doctor to see. I'm afraid of the withdrawal from DA. So I get by still using the ropinerole.
Good luck with it. I think I'd be off it at those levels.
It is possible to withdraw from ropinirole. Lots of advice in this forum how to do it.
There's no doubting that it might be like crashing through a brick wall, but once you're through, it will be better than where you are now.
You don’t need to see a doctor really- I went through withdrawal after realising my GP knew absolutely nothing about RLS and wouldn’t know how to help me. The knowledgeable people on this forum, many of whom had been through withdrawal, advised how to do it.
It was hellish but staying on Ropinirole was not an option. The intensity of Augmentation was ruining my life.
I did manage to see a neurologist many months after I had been through withdrawal, which was a bit of a disappointment as they tried to switch me to another dopamine agonist- the Neupro patch, but I was on oxycontin and pregabalin by that time and the neurologist confirmed to my GP that this regime could continue.
GPs in the UK are terrified of opioids because of the abuse crisis caused by overprescribing for chronic pain.
They need to read the research which proves low dose opioids are safe and effective for RLS long term as long as there is no history of abuse and the GP monitors the patient.
If you’re suffering augmentation and want to improve your situation then read all you can about augmentation and DAWS & take steps to reduce Ropinirole very slowly.
Thank you. As a victim, I am still coming to terms with the wreckage this drug has done.
In America the citizens petitioned and later sued the FDA to put warning labels on these drugs.
The citizens won, it's too late for me.
Me too!
Dopamine agonists
Dopamine agonists and their aftermath - A Survey
