Mirapex and requip

[Reverb]

I was just wondering if anyone else is on both of these. I started with requip. It stopped working after a year. Then I went on mirapex for around 6 months and it stopped too. Very very frustrating. My neurologist put me on small doses of mirapex through the day, 3 times and at night a higher dose with a small dose of requip. I've been off work for 4 weeks. Hopefully it starts to work soon. I think it is very common that when we don't sleep the symptoms get worse. Most nights are unbearable. I also take percocet during the day, which is the only time I am symptom free. I just started zopiclone at bed time. It helps a little bit. But when the urge to move my legs is severe, there is no sleeping pill/sedative that will keep me asleep.

[ViewsAskew]

I was just wondering if anyone else is on both of these. I started with requip. It stopped working after a year. Then I went on mirapex for around 6 months and it stopped too. Very very frustrating. My neurologist put me on small doses of mirapex through the day, 3 times and at night a higher dose with a small dose of requip. I've been off work for 4 weeks. Hopefully it starts to work soon. I think it is very common that when we don't sleep the symptoms get worse. Most nights are unbearable. I also take percocet during the day, which is the only time I am symptom free. I just started zopiclone at bed time. It helps a little bit. But when the urge to move my legs is severe, there is no sleeping pill/sedative that will keep me asleep.

reverb, whenever I hear something like this, I immediately think of augmentation.

When Requip or Mirapex "stop working," that means that the person augmented. So, the doctor increases it. Then it gets worse again, so they increase it again. Eventually, the poor person taking it has crazy symptoms.

There is only one way out of this, in my opinion. It's an opinion and I'm not a doctor, but I feel pretty secure in this - no one should need to keep increasing Mirapex or Requip and live with crazy symptoms. The way out is a better doctor who is more knowledgeable (or to educate this doctor, which may not be easy), to stop ALL dopamine drugs, and to use an opioid to cover your symptoms. Then a ferritin test. If your ferritin is below 100, you shouldn't use Requip, Mirapex, or Neurpro until your ferritin is close to 100.

The link in my signature takes you to another post; it has links in there about augmentation and treatment options.

[Reverb]

I think I will make another doctor appointment and talk to him about this. My ferritin is 13 and he is aware of this. He did increase my pain meds during the day, which was a nice surprise. But it's not enough to have a whole day of no symptoms. I still have at least half of the day where I am going crazy, and barely sleeping makes things worse.
I will get all my information from the links and posts that you all have sent me and go back.
I don't know what I would do without this web site

[Polar Bear]

It's great to hear that you have found our site useful. It was my saviour one night many years ago and has been my rock since that time.

[ViewsAskew]

It's great to hear that you have found our site useful. It was my saviour one night many years ago and has been my rock since that time.

Ditto!

[badnights]

can you save your pain meds for nights? at least you'd get a little sleep.

(just until you see your doc and show him the light, that is.)

[Reverb]

I was on one at night and they only last 3 hours. I think he wants me off them at night so I will know if the DA's are working.

[badnights]

Obviously the DAs are not working, you're only getting 2 hr sleep.

[Reverb]

Very true. I guess I'm always hopeful that something will start working. From all the reading I've done on here I think I have augmentation. The sleep varies week to week from 0-5 hours. This past week has been about 2 hours a night. I've been off work for a while. I'm supposed to return tomorrow. Its going to be hard. The odd time I will take one percocet at night if I'm desperate to get a few hours sleep. But then I am short the next day. It's a vicious cycle that I just can't win. If I was given more to alleviate my 24/7 symptoms,iI would sleep better and have some quality of life. I get 3 a day and they only last 3 hours now. Doctor said it is because im not getting enough sleep that they are not as effective. I guess too little sleep affects a lot of things.

[badnights]

Well another way to look at it, is that you;re not getting enough sleep because your medication is not effective! Imagine saying it the other way around....

It may be true that opioids are less effective at pain relief when you;re tired, but the plain fact (plain to me?) is that you're tired because you're not getting enough sleep because your medication is ineffective in controlling your WED symptoms.

It's like telling you to get more sleep; which is like telling you to stop having WED. Maybe he didn't say it that way, or mean it that way, but it seems he's missing the point ... that you need the freakin' drug to sleep. Well, if you can discuss augmentation with him, and point him to Dr B's latest paper on treating WED (which includes a discussion of how to treat augmentation) that would be useful. Copy my post at viewtopic.php?f=5&t=4749&start=165 - got to page 12 and scroll down to the post on Buchfuhrer's paper. It's important that doctors are aware of this kind of information. You can just show him a printout and ask him what he thinks.

[Reverb]

I wasn't thinking about it that way. Well put. I will show him what you suggested. Thank you

[Polar Bear]

Good luck - I hope your doctor is receptive and, together with the back up literature, that he provides the medication that will work.

[Reverb]

I have an appointment to see the neurologist next week. I've been reading about the maximum doses for mirapex and requip. I think he has me taking way too much.
Mirapex I take 0.25 3 times during the day. Then before bedtime I take 1mg.
I also take .75 of requip 3 times a day. Them before bed I take 1.0mg.
And they are not working.....alone or combined. And they make me more tired during the day.
I have printed the documents that have been sent to me about augmentation. I am praying he knows what it is and is receptive to the literature. If not, I guess I will be on the hunt for another doctor. I really hope this isn't the case. It took me almost a year to find this one that has rls knowledge.

[ViewsAskew]

I have an appointment to see the neurologist next week. I've been reading about the maximum doses for mirapex and requip. I think he has me taking way too much.
Mirapex I take 0.25 3 times during the day. Then before bedtime I take 1mg.
I also take .75 of requip 3 times a day. Them before bed I take 1.0mg.
And they are not working.....alone or combined. And they make me more tired during the day.
I have printed the documents that have been sent to me about augmentation. I am praying he knows what it is and is receptive to the literature. If not, I guess I will be on the hunt for another doctor. I really hope this isn't the case. It took me almost a year to find this one that has rls knowledge.

It's truly amazing how often this happens. I just can't think of a way to prevent it except us continuing to educate, educate, educate.

[badnights]

Be gentle with him ( the neuro), ask him what he thinks, tell him specifically what your worries are (especially if something in the papers you've read seems to be describing you). Give him time if he needs it, to learn about WED/RLS.

The most common reason by far for visits to RLS/WED specialists is mis-use of DA drugs (pramipexole and ropinirole) to treat symptoms of augmentation, and that's because so many physicians aren't aware that augmentation exists. It is important for us as patients to realize how unusual it is for a medication to help a disease at first, then make it worse. So our doctors will never dream that's what might be happening, unless they've learned about it elsewhere somehow (eg from a patient who has the time to investigate her own disease)

btw, do you have augmentation?