That sounds horrible, Momo. Yuck. And you're still having numbness? IMO, you've paid your debt of side effects now, and if the universe were fair you'd never have any again from any other drug.
It has to get better from here. You may want to ask the doctor about starting with half of the prescribed dose until you know what the side effects are.
Hang in there.
Finally!!!!! some medication!!!!
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SquirmingSusan
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ViewsAskew
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The side effects of it (and probably most medicines) are scary enough to curl your hair (or make it straight, depending).
But, I think that's true for ANY med we take. They just aren't aspirin. This is the hardest decision most of us make. It's the quality of our lives against the potential problems the meds can cause.
I think that I had one of the worst things happen that can. I took meds, the doctor didn't understand the side effects (neither did I), and it made my life beyond horrible for a long time.
I've learned from that. I'll still continue to take meds, but only once I know the side effects so I can watch for them. As soon as I have them? I make a determination about whether it's worth it or not.
But, I know I can't live without meds at this point. I couldn't function. I couldn't work. I couldn't be a loving and caring partner to my hubby. I couldn't be a friend.
It's a very, very thin line, though, and can be very hard to determine what to do.
If you decide to take the Mirapex, let us know. We can let you know what we think is important to watch for.
But, I think that's true for ANY med we take. They just aren't aspirin. This is the hardest decision most of us make. It's the quality of our lives against the potential problems the meds can cause.
I think that I had one of the worst things happen that can. I took meds, the doctor didn't understand the side effects (neither did I), and it made my life beyond horrible for a long time.
I've learned from that. I'll still continue to take meds, but only once I know the side effects so I can watch for them. As soon as I have them? I make a determination about whether it's worth it or not.
But, I know I can't live without meds at this point. I couldn't function. I couldn't work. I couldn't be a loving and caring partner to my hubby. I couldn't be a friend.
It's a very, very thin line, though, and can be very hard to determine what to do.
If you decide to take the Mirapex, let us know. We can let you know what we think is important to watch for.
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.
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SquirmingSusan
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With Mirapex or Requip, what you really need to know is this: Take the absolute smallest dose that controls your symptoms. It's OK to take half a tablet of the first starter dosage, and to stick with half a tablet (or even less) if it controls your symptoms. Don't move up to the next dosage if the lower dosage is working.
Those starter pack dosages can be too high for some of us, and can lead to augmentation, rebound, leg pain. So keep the dose as low as possible, and you'll dramatically reduce the risks of side effects.
Also, I can't remember if you've had your ferritin tested. If your ferritin is low (less than 50) there seems to be a greater risk of augmentation.
Those drugs are a miracle for the majority of RLS patients, and most people don't have a lot of problems with them. It's like your legs have been at war for years, and all of a sudden there's an outbreak of peace. Hopefully they'll be fine for you. Mirapex doesn't come in generic yet in the US, but I think it's available generic in Canada. It might be worth it to find out. Requip does have a generic here in the US, so you may want to ask about that being that cost is a factor here.
If not, well, you'll find something eventually if you stick with it.
Those starter pack dosages can be too high for some of us, and can lead to augmentation, rebound, leg pain. So keep the dose as low as possible, and you'll dramatically reduce the risks of side effects.
Also, I can't remember if you've had your ferritin tested. If your ferritin is low (less than 50) there seems to be a greater risk of augmentation.
Those drugs are a miracle for the majority of RLS patients, and most people don't have a lot of problems with them. It's like your legs have been at war for years, and all of a sudden there's an outbreak of peace. Hopefully they'll be fine for you. Mirapex doesn't come in generic yet in the US, but I think it's available generic in Canada. It might be worth it to find out. Requip does have a generic here in the US, so you may want to ask about that being that cost is a factor here.
If not, well, you'll find something eventually if you stick with it.
Susan
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ViewsAskew
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.125 is a good starting place. Make sure you take it 90 minutes before symptoms usually start.
And, as Susan said, do NOT go higher if this works, no matter what the doc says. Truly. Lowest dose possible for as long as you can.
You may feel some weird symptoms the first few nights - many people experience interrupted sleep and weird dreams. Usually that goes away in a week or so.
The one thing to really watch for is augmentation. Some people take this for years with no problem. Others take it for about two years before any problem. A few people, like Susan and me, only took it for a few times before we had problems with augmentation. This is when the RLS starts earlier in the day and/or gets more severe. They think that about 30% of people have this eventually, so this is the one to really be looking for over time.
And, as Susan said, do NOT go higher if this works, no matter what the doc says. Truly. Lowest dose possible for as long as you can.
You may feel some weird symptoms the first few nights - many people experience interrupted sleep and weird dreams. Usually that goes away in a week or so.
The one thing to really watch for is augmentation. Some people take this for years with no problem. Others take it for about two years before any problem. A few people, like Susan and me, only took it for a few times before we had problems with augmentation. This is when the RLS starts earlier in the day and/or gets more severe. They think that about 30% of people have this eventually, so this is the one to really be looking for over time.
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.
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ViewsAskew
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If it works at that dose, it will work the first time you take it, after about 90 minutes.
If the dose it too low, you'll still have RLS or some RLS. Then, follow your docs instructions on increasing it - usually every 3 or 4 days by .125 mg. The average dose, according to the docs, is about .5 to .75 mg a night. But, .25 was all I needed. Other people get along fine with .125. Other people need 1.5,
If I remember, your ferritin was pretty high, so that is good. New research is pointing out that taking this with low ferritin can increase your chance for augmentation.
If the dose it too low, you'll still have RLS or some RLS. Then, follow your docs instructions on increasing it - usually every 3 or 4 days by .125 mg. The average dose, according to the docs, is about .5 to .75 mg a night. But, .25 was all I needed. Other people get along fine with .125. Other people need 1.5,
If I remember, your ferritin was pretty high, so that is good. New research is pointing out that taking this with low ferritin can increase your chance for augmentation.
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.
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Polar Bear
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Hi Momo
Good luck with working at your dosage.
Good luck with working at your dosage.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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ViewsAskew
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Momo, did you take it prior to your symptoms? If you don't give it enough time, it just doesn't cut it.
But, it simply may be as you said, that this isn't enough. It's a very tiny dose and in all likelihood, you'd need more.
But, it simply may be as you said, that this isn't enough. It's a very tiny dose and in all likelihood, you'd need more.
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.
Yes, be very vigilant about taking it BEFORE your symptoms show up. That is one of the keys to getting these meds to work.
As for the side effects.. You just need to watch out for compulsive behavior.. Gambling, sexual urges, compulsively repeating certain tasks, etc..
If you find the meds do work out for you and continue to take it, you are going to have to inform your parents of those side effects as well, so that they understand what to look out for. Usually people who suffer from them do not even know something is wrong until it is way too late.
As for the side effects.. You just need to watch out for compulsive behavior.. Gambling, sexual urges, compulsively repeating certain tasks, etc..
If you find the meds do work out for you and continue to take it, you are going to have to inform your parents of those side effects as well, so that they understand what to look out for. Usually people who suffer from them do not even know something is wrong until it is way too late.