Is it that much worse than the other dopamine meds? I was on Mirapex some time ago until augmentation set in. The extended release is supposedly less likely to cause augmentation.
One is not worse than the other. What sets this one post off for me is that there are so many people that want to try to get off of the medicines.
1. It's a miracle drug for those with RLS - it WORKS. =)
2. We are starved for sleep beyond our own recognition
when we are presented with the pill that will solve our leg problem.
3. Do we really know at that time that it means ALMOST impossible
to stop the drug? (whatever pill, patch, etc) I felt like the medicine
is dangling in front of me when I was so sleep deprived..
4. The narcotic given can be adjusted from light to heavy for those 3
nights before we make that decision to take dopamine. it gives us
time to make the decision with a clear head about those drugs.
5. If after 3 days you want those drugs, then start them.
They are prescribed the way that they are.. I just wish that I would
have decided with a clearer mind than I did. I most likely would have ended up on the dopamine but at least I would have felt like I had all of the information BEFORE I started it.. I would have read more about how much the body becomes dependent on dopamine.
What I dislike about the way that they are prescribed is that it's like dangling a doughnut in front of a starving person... they are going to grab it and eat it immediately before getting the information just like I grabbed the dopamine before knowing or caring how much I would need that 6pm pill..
Nope, Not trying to gather anyone to do harm to the drug or the manufacturer - it's just a regret and a wish for newbies to dopamine.
They might find that they can do other things to solve their problem...
like trying iron, trying hot baths, trying the bounce ball before bed, etc.
There are enough forums to get the ideas from. It's to be helpful, not to destroy a good thing that works.
As usual it depends on the individual. there is no way i could have taken a heavy narcotic med for one night let alone 3. Because now we have the new recommended dosage for Requip and Mirapex, then we as the patient need to inform our doctors of that new dosage. We now need to keep the dose as low as possible and not let our doctors up it or for us to ask for them to up it. It doesnt mean augmentation will not happen on a low dose, but when it does happen it will be a bit more easier to come off that med. The higher the amount of dopamine you take, your brain will react to not getting all that dopamine, even in a small dose. When you reach the new dosage and it stops working its time to see your doctor and get help to come off that med , and try something else. And dont wait til you are " off the wall" with sleep deprivation before you seek help.
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I think that the doctor needs to assess if the patient is "off the wall" tired. Mine just said that there is a prescription that will make your legs more restful. That way you should be able to get more sleep. It doesn't drug your brain as in foggy. It just makes your legs still.
Now lets hit the breaks.. "I " was the one that went into my doctor to ask about Mirapex in particular. Someone told me about it and I was at that time ready to commit suicide from not sleeping for months. So I rushed into my doctor without an appointment and begged the nurse to be on standby in case there was an appointment opening due to a no show. (and there was one) I couldn't remember the name of the pill.... my doctor came in my exam room and he knew the name of the pill. (the nurse told him I was there and why ahead of time) so I told him how bad life was without sleep and he just prescribed it by saying what he did above. I told him that I couldn't test positive and work. I was working with developmentally disabled adults - He thought that dopamine would be the perfect answer for me.
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Yikes, the rules are do not use members names in posts or comments ! And alot has been learnt about the dopamine agonists and augmentation since "we" told you to go and ask for Mirapex. !!
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True Enough. I removed the names said. I agree with your statement that a lot has been discovered about augmentation since I was prescribed the drug... that is true.
What is in question is if the doctor is telling people that the drug prescribed today - (the drug that moves the dopamine from the brain into the body to be useful) is the same drug that may suddenly stop working for you - rebound effect is more of the way that it works.. meaning you either need more and more of the drug to get the same effect until it is no longer acceptable for the doctor to prescribe the dose
or
the same drug that is prescribed today will not be enough so you will have to find a new way to cope with the disease and while you are doing that, your RLS will most likely worsen or feel worse than it was to begin with. AND it is unlikely that there is another drug that will work for you BUT you can try to control it with dopamine patches or different formulas of the same drug.
OR
You can try switching over to another type of relief in the way of the anti seizure drugs or anti depressants.
OR
We can add some of those drugs in combination to try to control RLS.
But the bottom line is that you will not be prescribed more than .5mg USA at any point in time. Who knows, you may be lucky enough to have it work for 20 years or more but the majority of people have it stop working in .................. however long it is determined by data collected.
THAT is what I needed to know and wasn't told. THAT is what a newbie needs to be told by their doctors. Not by a forum. Most find out from their doctors about RLS after they ask the doctor why their legs won't settle at night. . THOSE are the people that I am worried about the most.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
What set this one off? Another niece went to the doctor without telling anyone (she was 18) and was given the pills without being told about augmentation or rebound effect whichever you prefer to call it. She found out from her mom that "Aunt Karen" takes them. She wondered why the pills aren't working and where I got mine from - she was thinking that the pharmacy had old or expired drugs - because mine are apparently working. She is at .5mg USA. She told her doctor and ended up on 1mg. Now she wants to get pregnant at age 19 and she's angry at me and her mom for getting her on pills that she can't ever get off of.
WE can all do without the drama of that situation however she should have been told.. it was only a year ago that she started on the pills. They knew that augmentation was likely and yet they didn't tell her. Is it that doctor's fault? I don't know and I certainly am not pointing fingers at anyone at all except to say that she wasn't told. Now how to get the message out
1. It is a drug that will work. (almost immediately)
2. You probably will have to deal with augmentation and the
choices are limited to treat the perception of RLS being
worse when you stop taking the drug.
3 The limit of drug that you can have is .5 USA per 24 hours.
And that's all that needs to be said of augmentation.
I am not discussing side effects of the drug.
I am describing augmentation (or rebound) only.
Nothing else is open for reply please. Please.
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I dont think there is any good answer i can give you or anyone else who is suffering with augmentation. I DO know that even today there are alot of doctors out there who still dont understand augmentation or how to deal with it. Also Rebound is not Augmentation, i have to just say that. Rebound happens when the medication has dropped out of your system before you take the next dose. Once you take your next dose and it kicks in then your symptoms calm down and you sleep at night. Augmentation MAKES your symptoms worse, keeps you awake and serves you no purpose anymore. And whether we like it or not forums ARE where we can inform ourselves from others experience. We have to be proactive when dealing with RLS. People DO get off the dopamine agonist meds, its not easy we know that. We have had members on here who have gone through augmentation with their doctors help and come out the other side. Thank you for changing your comment and deleting the names.
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I did it three times to last only a few weeks, once did it for 3 months.
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Gosh, are you saying that doctors are routinely prescribing drugs without testing iron levels first?
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Some are. Mine didn't look at that before prescribing. Maybe he looked at older readings but not any in the past 4 months.
I can't say for my niece since I am answering this at 349am - still stirring about trying to deal with augmentation or my own rebound effect - whatever name it goes by - I used to take a dose at 5am but now with the new prescribing information I want to stay nearer to the limits.
I wanted to go up on the current dose to begin with but read on here that I am already over by 1mg per day so I guess that isn't going to happen.
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You poor lamb. thank you for your posts. I found them a very useful warning.
Have you looked at the useful table they give in the International Restless Legs Syndrome Group recommendations for treatment? If you haven't, it only deals with initial treatment, but it does spell out quite well whether a dopamine agonist or an alpha-thingy drug is better for a particular person. Eg, high pain - Gabapentin - ADHD or any inability to restrain impulses - Gabap - anxiety - gabap (I can only remember the Gabap ones because I was checking it out for my son.) Since here in the UK doctors have little time to consider the patient as a person I think it's worth the patient running through the table for themselves.
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Reading it to the end right now. How I wish that this had been known and presented to me, for others on this site. You are right about thinking that it's worth it for patients to read this in it's entirety. It's a good material for decision making. I hope that everyone on this entire site reads it. I hope that you bring the information to light in a separate post because I am sure that I lost some credibility being the whiner on this site about this. They will prob say "Here's another one of her Rants" since I am pushing foods as a good way to knock some RLS down and other alternatives as I was regretting being so dependent on the medicine. Thank you so very much for bringing this to my attention. I do appreciate it. Tons.
Karen
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Can you give me that direct web site once again Please Aspmama?
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This is the International Restless Legs top guy/gel consultant/researchers forum - worth keeping an eye on.
which has a button for the FULL TEXT, which is the one worth reading because it has the table at the very end.
Hope that's what you are looking for!
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Remember that this is a table for initial prescription, so for new patients - but it may be of interest for anyone taking either of the two categories of drugs mentioned.
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Thank you so much. It's very much appreciated that you brought that to my attention and SAID that it was for people just starting medications. Why on earth would doctors not show that information to a person starting out on prescriptions for RLS.. It's the most important thing that will help to make a good decision. My doctor never did tell me anything about how long to expect the medicine to work well. Jens doctor said "Well then we increase the dose a little bit" on her 2nd appointment. Jen showed him the chart that you have here. He said "Well lets just hope that we get a long time between bouts." That's why I asked for the website again. I am flipping mad that it wasn't told correctly as a brand new patient and was also ignored.
My first thought before ordering the Mirapex ER was to get off the dopamine drugs, a scary thought, since it is unlikely that an opiate would be prescribed by a Canadian doctor. I thought I would probably have to be hospitalized to do it.
But then, what happens next??
I will still have RLS and its seems most people go back to a dopamine drug after their drug holiday.
A bar of soap under the blankets is not going to help!
I believe the doctors have no idea of the monster they are creating by prescribing these drugs and then upping the dosage "as needed". I would get off these or at least give it a darn good effort if I thought there was a light at the end of the tunnel.
Lots of people go into the doctor without any information
and are given the drug (s) without the benefit of this forum.
The doctor never told them how difficult it is to get off the drug
in case they have to (pregnancy, other) or if they just want to.
You are the lucky one to get the full information before you
start taking it. Most people are pretty much "off the wall without
sleep desperate for sleep) They aren't always told ....
But what Elisse said is that they are no longer prescribing so
much dopamine in a dose as they did when I was taking my
first dose. I started at the highest dose given right now.. and
I was told that I could go up to 3mg... I went up to 2mg at my
highest... I was taking pills in the morning and at night.. so
without both dosing times (if I forgot my pills) My legs were
going bazark... I was a basket case by the evening dose. ..
As long as you know that you will need your dopamine and it's
a smaller dose, I guess I am okay.. I am on .5mg. USA.
and my legs still go nuts without the medicine. Sometimes
I have to add .25 USA in the morning.
If I eat my dopamine foods I don't have to take that morning dose.
I have to eat a fair amount of those foods to avoid that dose.
I wish I had tried that - eating that way before the doctor gave me
that extra dopamine. The doctors at Mayo really want me to stop
it altogether. I am undergoing procedures that I should be drug free for. I will see the doctors from there in July and I better be off of all medicines. Right now it doesn't look like it can happen for me. = /
I am already on a ridiculous dosage of dopamine, 4 mg Neupro and 1.5 mg of ropinirol. Did not know soon enough, and like you can not tolerate a delayed dose.
What foods are helpful?
I have some active posts on foods that cause the brain to release some dopamine but not so much to get you off your patch and pills.
I am done with this rant so help me God and if even one single person was helped to make a more informed decision about taking the drugs (any of them) then I will have felt like it was worth it to put my head out on the chopping blocks.
I am not a doctor, not in the medical field and I am not able to advise anyone. I simply stated what I wish that I would have been told (had they known 3 years ago) and I wish for my niece that she had been told by anyone that augmentation was known and would most likely happen at some point
I wish that I had the chance to make a sound decision after reading some materials with a clear head. At the time I was so sleep deprived that I
couldn't make an informed decision had there been any information.
I am done with my rant and I am grateful always to 2 ladies that saved
me from committing suicide because of not sleeping and no hope at
that time of ever having legs that would need to keep moving would stop. And
For gosh sakes people that are reading this .....
The NEED to keep MOVING legs is what RLS is. Nothing more or less.
THAT is the only symptom that the drug is designed to work for.. ..
Not pain, cramps, itching, creepy crawly but NEED TO MOVE LEGS...
is RLS..
or if you legs keep moving and kicking while you are already asleep
then it's also indicated for that condition...
but not pain.. please don't take it for painful legs. I know that pain can
come WITH the need to move legs but not just pain and cramps.
remember NEED TO MOVE THE LEGS = RLS.
If you have other symptoms it's okay but the NEED TO MOVE THE LEGS
My sincere thanks for everyone's input. This is an excellent forum and I only wish the doctors and neurologists were as well informed. My (former) neurologist wanted me on 6 mg ! and when I asked about augmentation, she said " we don't use that here".
I am going to hang in till my appointment with a new nuerologist and make an "informed" decision after that. If I can get off the dopamine drugs, is there anything else?
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I have a couple questions about Neupro and Mirapex.
Gabapentin
Gabapentin/Neupro
RLS
