Does anyone know???
Does anyone know???
We've all heard that Mirapex/Requip may cause compulsive behaviors. I love Mirapex, it has changed my life but I think I might be seeing some compulsive behaviors. I only take .5 mg every night. I thought I remember reading somewhere that usually only Parkinson's patients that are taking really high dosages may experience compulsive behaviors. I've been taking Mirapex probably 2 years. Does anyone have any additional information about this? I feel like I'm taking a pretty low dose but I'm wondering if being on it for several years adds up or something like that!
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cmoore1958
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- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
Hi Greencow,
Welcome to the board. I take mirapex and have for a few years. My usual dosage has been .5 mg at night. Recently I've been in a rough time with creepy crawly kicking legs and arms during the day. I am now taking up to 1 mg a day -- mostly spreading it out .25 at a time right now.
I have not had any compulsive behavior on the mirapex. And, I don't remember reading about that as a symptom. I'm going to go and look that up and I'll let you know what I find out.
Are you on other meds as well? Any other health issues that compound your rls?
Cyndi
Welcome to the board. I take mirapex and have for a few years. My usual dosage has been .5 mg at night. Recently I've been in a rough time with creepy crawly kicking legs and arms during the day. I am now taking up to 1 mg a day -- mostly spreading it out .25 at a time right now.
I have not had any compulsive behavior on the mirapex. And, I don't remember reading about that as a symptom. I'm going to go and look that up and I'll let you know what I find out.
Are you on other meds as well? Any other health issues that compound your rls?
Cyndi
Even when we are by ourselves, we are never truly alone.
My motto: It's MY pitty-party and I'll vent if I want to.
My motto: It's MY pitty-party and I'll vent if I want to.
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cmoore1958
- Posts: 232
- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
Greencow,
This is what the Mirapex web site says:
What are the possible side effects of MIRAPEX? Back to top
Most people who take MIRAPEX tolerate it well. Some of the more common side effects can include:
Nausea
Headache
Tiredness
When beginning to take MIRAPEX, you should be cautious until you know how the drug will affect you. Some people who take MIRAPEX can become sleepy or fall asleep while doing normal everyday activities like driving a car. It is possible that MIRAPEX treatment can cause someone to feel faint or become dizzy when standing up from a seated or prone position. There are reports of some people having hallucinations (seeing, hearing, feeling, smelling, or tasting something that does not actually exist) while taking MIRAPEX. However, hallucinations are uncommon in people taking MIRAPEX for primary restless legs syndrome and occur more frequently in people over 65 taking MIRAPEX for Parkinson’s disease.
There have been reports of patients taking certain medications to treat Parkinson’s disease or RLS, including MIRAPEX, that have reported problems with gambling, compulsive eating, and increased sex drive. It is not possible to reliably estimate how often these behaviors occur to determine which factors may contribute to them. If you or your family members notice that you are developing unusual behaviors, talk to your doctor.
The last paragraph does mention compulsive eating and a few other things. I'm not sure if this is what you're talking about.
Hope this helps.
Cyndi
This is what the Mirapex web site says:
What are the possible side effects of MIRAPEX? Back to top
Most people who take MIRAPEX tolerate it well. Some of the more common side effects can include:
Nausea
Headache
Tiredness
When beginning to take MIRAPEX, you should be cautious until you know how the drug will affect you. Some people who take MIRAPEX can become sleepy or fall asleep while doing normal everyday activities like driving a car. It is possible that MIRAPEX treatment can cause someone to feel faint or become dizzy when standing up from a seated or prone position. There are reports of some people having hallucinations (seeing, hearing, feeling, smelling, or tasting something that does not actually exist) while taking MIRAPEX. However, hallucinations are uncommon in people taking MIRAPEX for primary restless legs syndrome and occur more frequently in people over 65 taking MIRAPEX for Parkinson’s disease.
There have been reports of patients taking certain medications to treat Parkinson’s disease or RLS, including MIRAPEX, that have reported problems with gambling, compulsive eating, and increased sex drive. It is not possible to reliably estimate how often these behaviors occur to determine which factors may contribute to them. If you or your family members notice that you are developing unusual behaviors, talk to your doctor.
The last paragraph does mention compulsive eating and a few other things. I'm not sure if this is what you're talking about.
Hope this helps.
Cyndi
Even when we are by ourselves, we are never truly alone.
My motto: It's MY pitty-party and I'll vent if I want to.
My motto: It's MY pitty-party and I'll vent if I want to.
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ViewsAskew
- Moderator
- Posts: 16744
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
Greencow, I wish it weren't true, but several of us have experienced the compulsive behaviors...and at very low doses. Your doctor may or may not be up to date on this, but it's a good idea I think to contact him or her right away if you have concerns.
cmoore, since the Mirapex is suddenly worsened, please take a moment to read about augmentation if you have not already. It might be a rough patch, but when on a DA when symptoms worsen, or more severe, or happen earlier (or now all the time), it's almost always augmentation. The "sticky" in this section (Pharma) has info about it.
These can be great drugs. They just don't always work for extended periods without needing to come off of them for awhile. The sooner they are stopped when problems arise, the more likely it is they can be used again at a later date (but no one is positive what exactly happens).
Hope you both find some answers and can work with your doctors to find a good approach to resolving these problems.
cmoore, since the Mirapex is suddenly worsened, please take a moment to read about augmentation if you have not already. It might be a rough patch, but when on a DA when symptoms worsen, or more severe, or happen earlier (or now all the time), it's almost always augmentation. The "sticky" in this section (Pharma) has info about it.
These can be great drugs. They just don't always work for extended periods without needing to come off of them for awhile. The sooner they are stopped when problems arise, the more likely it is they can be used again at a later date (but no one is positive what exactly happens).
Hope you both find some answers and can work with your doctors to find a good approach to resolving these problems.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Thanks cmoore1958 and ViewsAskew for responding! After reading your posts, I did a search on the board for "compulsive behaviors" and really was surprised that many RLS sufferers on DA's did experience compulsive behaviors. There was this one post where they said that for them, with gambling, they had gambled before taking a DA and shortly after taking a DA with no problems but then after taking the DA for awhile, gambling became an obsession. I know with me it's been easy to tell myself "I'm only doing this because of stress with my marriage and daughter and it's an escape for me and I can stop it anytime" I also start thinking "Well, I am turning 40 this year, maybe it's a midlife crises thing..." The thing is that it is getting worse and I'm scaring myself so...I told my Dr. I wanted a long drug holiday from the Mirapex. He called me in Tramadol and klonapin. I'm real curious to see how I feel in a month or so. Does anyone know how long it takes a DA to get out of your system? Thanks!
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
They are not that long lasting...not sure how long the complusive behavior takes to diminish. With me it was immediate, but I was also in benzo withdrawal, so had no energy to be compulsive.
I'd suggest you do a bit of research on the replacement drugs. I am maybe a bit too outspoken about benzos, but do worry that people are not sufficiently aware of the potential problems with them. While we do need to control our RLS if it's causing quality of life problems, it's likely that we will need to stop or switch drugs now and again. To me, it's best to know what we might experience when that happens. It may...or may not...affect our decision.
greencow, since I haven't had the honor of meeting you before, I am wondering if there are any other things you might be able to do to get the RLS under better control and reduce your meds. Of course, many of us try and have no effect, but some of us do. Has your doctor tested your ferritin levels recently? If low, increasing iron might reduce the meds you need to take. Or possibly looked into other meds you might take that make the RLS worse?
I am glad your doctor was responsive.
I'd suggest you do a bit of research on the replacement drugs. I am maybe a bit too outspoken about benzos, but do worry that people are not sufficiently aware of the potential problems with them. While we do need to control our RLS if it's causing quality of life problems, it's likely that we will need to stop or switch drugs now and again. To me, it's best to know what we might experience when that happens. It may...or may not...affect our decision.
greencow, since I haven't had the honor of meeting you before, I am wondering if there are any other things you might be able to do to get the RLS under better control and reduce your meds. Of course, many of us try and have no effect, but some of us do. Has your doctor tested your ferritin levels recently? If low, increasing iron might reduce the meds you need to take. Or possibly looked into other meds you might take that make the RLS worse?
I am glad your doctor was responsive.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
I was originally given klonopin when I first talked to my Dr. about my RLS years ago. I started with the lowest possible dose and it worked like a charm for a few weeks then I had to increase etc... My brother is a prescription drug abuser and at one time klonopin was his drug of choice. As soon as I saw that pattern of needing more of the drug to get the same affect, I told my Dr. I didn't want to take it anymore. This is when I started on Requip and then onto Mirapex. I have blood work done quite regularly to monitor my platelets, cholesterol and hormone levels but I have no idea if checking my ferritin levels is part of that or not - I'll have to ask. Other than that, I try real hard to distract myself, massage, use my portable TENS machine etc... I usually do okay to manage during the day but need something to sleep at night.
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
Ferritin is not checked unless a savvy doctor knows to do so.
For about 20% of people with low ferritin--anything below 50 for RLS patients-- their RLS goes away completely when they improve ferritin levels. For another 40%, there is a reduction in symptoms. The rest of us with low ferritin see no change. I'm in the no change category, but there are people here who can reduce or eliminate their RLS by simply getting more iron in their diet.
Always get a test before taking oral iron, though, as some of us have high ferritin already and increasing iron can be dangerous.
For about 20% of people with low ferritin--anything below 50 for RLS patients-- their RLS goes away completely when they improve ferritin levels. For another 40%, there is a reduction in symptoms. The rest of us with low ferritin see no change. I'm in the no change category, but there are people here who can reduce or eliminate their RLS by simply getting more iron in their diet.
Always get a test before taking oral iron, though, as some of us have high ferritin already and increasing iron can be dangerous.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Oral iron can definitely help if you know you need it. I'm in Ann's 40% group. Iron reduces my symptoms by about a third or a half, I'd say, but not entirely. Even when I overdid it to the point that I started tasting the iron, the RLS still didn't go all the way away. (That was probably dangerous, since it builds up in muscles, including the heart. These days I take it easy.)
I think of adding iron to the body like this: The iron feeds a process that staves off RLS in most people. You can be deficient in iron, and/or the process can be screwed up. Either can be the limiting factor. If your iron absorption is at 50% of capacity, you're only 50% healthy. If the iron-fed process is still 100% efficient, you could supplement the iron until you're 100% healthy. If the process is only at working at 75%, you can only get up to 75% healthy, no matter how much iron you add. If the process is totally broken, adding iron won't help at all.
Still, it's more than enough to be worth checking.
I think of adding iron to the body like this: The iron feeds a process that staves off RLS in most people. You can be deficient in iron, and/or the process can be screwed up. Either can be the limiting factor. If your iron absorption is at 50% of capacity, you're only 50% healthy. If the iron-fed process is still 100% efficient, you could supplement the iron until you're 100% healthy. If the process is only at working at 75%, you can only get up to 75% healthy, no matter how much iron you add. If the process is totally broken, adding iron won't help at all.
Still, it's more than enough to be worth checking.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
Hi
My dr found my ferritin to be 8 and was having wild rls , been taking iron for nearly nine weeks it is now 19 and will be checked this week to see if its gone up higher.
Since starting iron my rls has mostly gone at night, only comes when I am really stressed or I have to stop taking the iron for a few days, as it makes me feel quite ill and i need to take a break from it ,to feel good again.
My dr only wants it to go to 24 so I wonder what will happen when I stop taking the iron completely.
I need to eat foods which are high in iron well me being me dont know what thay are, looked up stuff dont understand it, mybe i'm stupid I thinks so. Here we have very few packets wot say anything about iron,I have tried looking.
Does anyone know food to eat that will help?
I don't think this post should be here but it is
hopefully moonlight x
My dr found my ferritin to be 8 and was having wild rls , been taking iron for nearly nine weeks it is now 19 and will be checked this week to see if its gone up higher.
Since starting iron my rls has mostly gone at night, only comes when I am really stressed or I have to stop taking the iron for a few days, as it makes me feel quite ill and i need to take a break from it ,to feel good again.
My dr only wants it to go to 24 so I wonder what will happen when I stop taking the iron completely.
I need to eat foods which are high in iron well me being me dont know what thay are, looked up stuff dont understand it, mybe i'm stupid I thinks so. Here we have very few packets wot say anything about iron,I have tried looking.
Does anyone know food to eat that will help?
I don't think this post should be here but it is
hopefully moonlight x
sleep is not only a dream
Hi Moonlight you are far from being stupid. When you buy things from the market look on the back where they have all the calories, sodium etc and that will say iron. The amount that you need I am not sure but maybe other members will post that will help you.
You have a good day and am glad that your rls is doing better and hope that it continues.
Take care my friend,
You have a good day and am glad that your rls is doing better and hope that it continues.
Take care my friend,
Charlene
Taking one day at a time
Taking one day at a time
Moonlight
A resource that I received from a dietician listed iron sources as follows rating them as "Super", "Good", and "Fair" :
All meats are "Super" sources of iron including beef, pork, venison, sausage (all kinds) chicken, turkey, and all game birds, liver, tuna, salmon, and other fish. These are your best iron sources.
A "Good" source can be cereals that are "fortified" with iron check the lables. If iron isn't listed then it's probably not a good source, keep looking.
"Fair" sources include nuts, seeds, beans, peas, peaunut butter, and Tofu. Enriched bread, rice, and pasta may also be included in the "Fair" category.
Finally to give yourself an extra boost choose to eat something high in vitamin C (oranges, orange juice, and other citrus fruits, tomato, tomato juice, strawberries, watermelon, cantaloupe, potatoes, brocolli, spinach, cabbage, coleslaw, green pepper etc.) with any of the foods on the "Good" and "Fair" list to help the absorption of the iron.
Hope this helps
Sorry this kind of goes off topic but I wanted to respond to Moonlight's question in the thread where it came up. Let me know if you still have questions Moonlight.
A resource that I received from a dietician listed iron sources as follows rating them as "Super", "Good", and "Fair" :
All meats are "Super" sources of iron including beef, pork, venison, sausage (all kinds) chicken, turkey, and all game birds, liver, tuna, salmon, and other fish. These are your best iron sources.
A "Good" source can be cereals that are "fortified" with iron check the lables. If iron isn't listed then it's probably not a good source, keep looking.
"Fair" sources include nuts, seeds, beans, peas, peaunut butter, and Tofu. Enriched bread, rice, and pasta may also be included in the "Fair" category.
Finally to give yourself an extra boost choose to eat something high in vitamin C (oranges, orange juice, and other citrus fruits, tomato, tomato juice, strawberries, watermelon, cantaloupe, potatoes, brocolli, spinach, cabbage, coleslaw, green pepper etc.) with any of the foods on the "Good" and "Fair" list to help the absorption of the iron.
Hope this helps
Sorry this kind of goes off topic but I wanted to respond to Moonlight's question in the thread where it came up. Let me know if you still have questions Moonlight.
moonlight--
Once you get your iron up, you might be able to slow down your intake. I think we lose iron fairly slowly, though a menstruating woman loses it faster than a man will. It's just the fact that some of us have been in a slow iron decline for long enough that it's finally bottomed out.
Mine was low also (11 I think) and I took iron solidly for quite a while, until I too got so nauseated by it that I had to back off. However, now I take my pill maybe a couple of times a month (when I remember, sigh) and it seems to be good enough to keep me maxed out. I think oral iron really irritates the GI tract, so if you keep taking it, it keeps getting worse, but if you give it a break, it can get back to normal before you tick it off again. I also find taking it with food helps.
I'd say get a bloodwork order for ferritin, get it checked, and when the results are in, go talk to your doctor and see if he thinks it'll stay up with less-frequent dosing. Pick a new schedule and then check your blood again in a few months. It's worth a try. Nausea isn't much better than RLS.
You can also get IV iron. It's more expensive, and more of a bother, but it'll do you for at least a few months at a time. I did this last summer and it held me until late fall with no oral iron.
Once you get your iron up, you might be able to slow down your intake. I think we lose iron fairly slowly, though a menstruating woman loses it faster than a man will. It's just the fact that some of us have been in a slow iron decline for long enough that it's finally bottomed out.
Mine was low also (11 I think) and I took iron solidly for quite a while, until I too got so nauseated by it that I had to back off. However, now I take my pill maybe a couple of times a month (when I remember, sigh) and it seems to be good enough to keep me maxed out. I think oral iron really irritates the GI tract, so if you keep taking it, it keeps getting worse, but if you give it a break, it can get back to normal before you tick it off again. I also find taking it with food helps.
I'd say get a bloodwork order for ferritin, get it checked, and when the results are in, go talk to your doctor and see if he thinks it'll stay up with less-frequent dosing. Pick a new schedule and then check your blood again in a few months. It's worth a try. Nausea isn't much better than RLS.
You can also get IV iron. It's more expensive, and more of a bother, but it'll do you for at least a few months at a time. I did this last summer and it held me until late fall with no oral iron.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.