Mirapex question

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Jitterlegs
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Mirapex question

Postby Jitterlegs » Wed Jul 16, 2008 11:58 pm

Have any of you missed a few days of your medication and then taken it? If so, what dose were you at and did you notice extra side effects? The reason I ask is because I didn't take a .5 mg dose for about 3-4 days, and then took .625 because the .5 wasn't helping and the dr. told me to increase it. Well, my legs hurt SO badly and I didn't think I was going to be able to stay awake. I was at work--not a good thing. It seems I have RLS all day, and it bothers me most while sitting at my desk, so I took it when I woke up. I am just wondering if it is my fault for missing a few days or if I was augmenting on Mirapex. I have called the sleep center, but it has been 3 days and I haven't heard back! Ugh!! Good thing I'm not dying! :roll: I haven't taken any since and won't until I get a good reason why I should. It wasn't helping and I don't think my RLS is bad enough to have those side effects--that was SO much worse than RLS itself! I was just looking forward to what I would actually feel like without RLS symptoms, but maybe I will wait to take any more drugs until I am absolutely going insane. Besides, my ferritin is slightly low, so maybe if I get that up a little that will help the RLS too.

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Postby ViewsAskew » Thu Jul 17, 2008 3:44 am

I can't say I understand to logic, but Mirapex and Requip are both approved to take "as needed". (I don't understand the logic, because they take at least an hour to work and don't work as well once the RLS has started. So, how are you to know when you need it 90 minutes before you do???)

But, the point is that it's OK to take them and then not take them and then take them again.

The other part of the logic I don't understand is that many people have side effects with these, but only in the beginning week or two. If you never get used to it, how in the world would you ever get over the side effects????

Now, I don't really have those kind of side effects from Mirapex (I get other weird ones, but no pain or nausea) and I take it about twice a week instead of my other regular drug. I have no problems doing so. So, taking it and then stopping and taking it again is not a problem.

Several members over the years have written here that Mirapex and Requip have caused leg pain. A search on leg pain and Mirapex or Requip together might bring them up. It seems that stopping it was the only way to stop the leg pain, if I remember correctly, but again, it might be wise to search for the posts.

It sounds to me as if the Mirapex hasn't stopped the RLS at the current dose, but it has caused leg pain. If it were me, I think I'd be making an appointment, algorithm in hand (see the link in my signature), and asking what we were going to try next. But, that's me...and I am not a doctor.
Ann - Take what you need, leave the rest

Managing Your RLS

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Jitterlegs
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Joined: Sun Jul 06, 2008 3:45 pm

Postby Jitterlegs » Thu Jul 17, 2008 1:53 pm

Thanks for the reply. That is what I was looking for. I thought maybe I shouldn't have stopped it for a few days and then taken it again. I am one that has a hard time taking it 2 hours before symptoms start as it is there first thing in the morning. I would like a medication that would curb the symptoms and only take it on the days I work (2-3 days a week). I can handle the symtpoms when I am at home (because I can get up when I need to and move around), it is at work that is very hard.

Still no word from the sleep center! :evil:

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Postby ViewsAskew » Thu Jul 17, 2008 7:14 pm

If you only need to use it 2-3 days a week, Sinemet may be a much better choice. According to the information available regarding RLS drugs, Sinemet works in about 20-30 minutes and can be taken up to 3 or 4 days a week (depending on dose). It's a dopamine drug, but not an agonist. It's associated with augmentation, which is why it should not be taken more than a few days a week.
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.

Jitterlegs
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Postby Jitterlegs » Thu Jul 17, 2008 9:28 pm

Thanks for the tidbit! I really would like it if I could get by only a few days a week, but I have a feeling that once I know what NO RLS feels like I will want it all the time! :lol: Oh, to just "imagine" what that may be like! I think I have had RLS SO long, that I don't know what feeling "normal" is like! I have to wonder if RLS could be the cause of my poor concentration/being easily distracted (not to mention irritability). Good grief, it is like having a fly on your nose all the time! Very annoying.

BTW, the nurse FINALLY called, and she is going to get the info to the dr. and see what I should do. She doesn't think (according to the dr. notes), that the dr. is aware that I am taking it in the morning. Well, she said to take it 2 hours before symptoms start, and I am pretty sure I told her it really bothers me at work! The nurse asked me how I was getting by without the medication--DUH! :roll: The same as I have ALWAYS--just dealing with it! It isn't like it worked anyway! Sorry, after 4 days of waiting for a call, I am a little frustrated and crabby. :twisted:

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Postby ViewsAskew » Thu Jul 17, 2008 10:31 pm

I don't know how well educated your doc is about RLS, but other people here have successfully used many different meds during the day. It can be hard to get "in front" of your symptoms when they are constant.

I can't recall if you've said or if anyone asked, but do you drink coffee or any thing with caffeine in the morning? That could be a problem.

Or take any other meds? Sometimes they are problems too.
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.

Jitterlegs
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Postby Jitterlegs » Thu Jul 17, 2008 10:53 pm

I am very confident in the dr. I see, just impatient. We are battling 2 evils right now. RLS and sleep apnea. My sleep apnea wasn't as big of a problem as was my "arousals" of 50 times an hour. I have had terrible sleep for years--also have had RLS for years. It was my poor sleep that got me going on this more than anything. They didn't detect movement as a problem for my sleep, but did breathing. However, I didn't sleep much, and who knows if it could have been the RLS that was bothering me more mentally than physically. Does that make sense?? :? I guess what I mean is that maybe I don't move my legs necessarily in response to the "tingling" feelings I get as much as am just "disturbed" by them and can't settle down.

I do have a soda with caffeine or two in the morning--seems I need it to get going, and the dr. is aware of it. The amount of caffeine in a soda isn't near what it is in a cup of coffee, but I do know that we are better off without caffeine than with. I haven't always drank caffeine, but "like to"! And, yes I take Sarafem which can worsen RLS symptoms. I am going to see if there is an alternative that I could take. Again, the neuro is aware of it.

Do you know if people augment from Mirapex, after they get off the medication, do the RLS symptoms stay elevated or do they go back to how they were before taking it? I guess that is my biggest fear that I will be worse off than before.

I am thinking of trying Mirapex again tonight and see what happens. I would welcome the sleepiness!

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Postby ViewsAskew » Fri Jul 18, 2008 4:51 am

According to most RLS doctors, the RLS always returns to prior levels after stopping the medication that caused it to worsen.*

I am an exception. I took Mirapex for PLMs, not RLS. I had very mild RLS, only once a month or so, but severe PLMs. I augmented to daily RLS within a week of taking Mirapex. Most doctors have never heard of such a thing - it takes months for the vast majority of people to augment. And, in keeping with being an exception, when the doctors stopped the Mirapex, my RLS did not diminish at all from the augmented levels.

So, in terms of the medical research, you're fine and there really isn't anything to worry about. And, since I only know of one or two other people with similar problems to mine, it would seem that we are by far the exception. And, it also seems to me that the main issue may be how long you stay on the drugs after augmenting. So, even if you did augment, you'd know what it was and you'd stop the drug right away. That would resolve any potential problems.

*Dr Allen is the only doctor I've heard say that it's possible not to return to prior levels if the augmentation lasts a long time. I can't recall the conversation I had with him word for word, but the gist was that he felt augmentation should never be treated by increasing the dose because he felt there was the risk of making things permanently worse. Of course, this was several years ago and he may have new information now that has changed how he see it. Since it happened to me, I believe he is right :wink:
Ann - Take what you need, leave the rest



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SquirmingSusan
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Postby SquirmingSusan » Fri Jul 18, 2008 4:58 am

I'm the wrong person to ask about RLS levels returning to baseline after augmentation, because I augmented about 1-1/2 years ago and have not returned to the level of RLS I had before I took Requip. However, the official position, according to Dr. B (our beloved expert), is that things eventually do return to the level they were at before taking the medication. So, I think that for most people things probably do settle back down.

You might want to look at the thread about "Caffeine Withdrawal" or some such title. It's a current thread, and several people have found that once the withdrawal is over, they wake up just fine without it. It's something to consider if you're having RLS right away in the morning.

And yes, the Sarafem may well worsen your RLS, but antidepressants can be very necessary, and many of us take them without bad effects. It varies a lot from person to person.

Sometimes depression is treated with anticonvulsants, and so is RLS, so you could talk to the doctor about that possibility. It sounds like you need something long acting since you have the RLS pretty much all the time.

There are just so many options for treatment that it can take a while to put the pieces together and get a plan that works for you.
Susan

Jitterlegs
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Postby Jitterlegs » Fri Jul 18, 2008 1:01 pm

The more I read about the drug the more I don't like it. So, here is the latest. I decided to take the .625 dose 2 hours before going to bed just to see if I might sleep better--I was SO tired the morning I took it this week. This time I was dizzy after taking it--my dr. told me that could happen, but usually goes away. Not only that, but I had some strange body jerks while falling asleep. One was my head. It just jerked to the side. Kind of freaked me out. The other was one leg. (it wasn't the normal body jerks when falling asleep) Not sure if I did any moving during the night that I was unaware of, but I slept SO poorly! I have a headache this morning too, and my legs are really achy. I certainly don't like what this medication is doing, but I have to wonder if I should just give it a few more days and continue taking it. I don't know if I will hear back from the dr. today or not, but I am probably best off not taking it and waiting to hear what the dr. says. I was just so excited to finally get some relief--that impatient side again!

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Postby ViewsAskew » Fri Jul 18, 2008 6:06 pm

No question - what happened to you is very similar as to what happened to me. I was very sensitive to the side effects of this drug...still am. BUT, for me at any rate, these main scary ones went away with regular use. The only way to know if these will stop or not is to try it.

I totally understand the ambivalence. I was very concerned about this drug. In hindsight, I wish I'd not done it, but only because no one knew what to do about the augmentation. If I'd just stopped it when I augmented, things may have been different.

I'm still ambivalent about it...I can see how well it works for so many people. And, I do think it's a great option to have and probably the best first choice. I just think we need to watch our reactions carefully, allow it to settle in, and then make decisions based on what happens.
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.

Jitterlegs
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Joined: Sun Jul 06, 2008 3:45 pm

Postby Jitterlegs » Fri Jul 18, 2008 10:00 pm

Well, I didn't hear anything back today, so I won't hear until at least Monday as far as what to do. So, in the meantime, I am not going to take it. I will ask about how to treat the daytime RLS specifically. I have another appointment the middle of August and will have all my questions ready. I just can't believe how strange it is that I have just put up with it all these years. It is only now that I am realizing how bad it has been. I also now have made a correlation between my "leg pains" and the RLS. I just brushed them off before like I did the jitterlegs. I figured I had done something to cause them to ache. Like walking too much or "bouncing my legs too much"! :lol: I can also remember having severe "growing pains" when I was young. My legs would hurt so bad I would cry (and I was a TOUGH kid), and my mom would rub them. Maybe over the years I have just built up a tolerance??? Now that I have "something treatable", I want it fixed! :D But, at the same time I am so leary of the drugs! If I could just get a sleep aid, and get my ferritin up, maybe it would be okay.

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SquirmingSusan
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Postby SquirmingSusan » Sat Jul 19, 2008 7:57 am

Jitterlegs, what you're describing after you take the Mirapex is quite like what happened to me when I augmented on Requip. An hour or 2 after I took the drug my legs started to ache like crazy. And the body jerking. Ugh. That is so annoying - and scary. Now I take a teeny tiny dose of Mirapex every night and it helps settle down the jerking. I never had the body jerking until I took Requip, and sadly it hasn't gone away in the year and a half since stopping it.

I don't want to scare you with that information, but I do want to urge you to pay attention to your body and be very careful with that drug.

Oh and I know what you mean about the aching legs when you were younger. I was a tough kid too, and the leg aching had me crying many times. Even now sometimes it will start earlier in the day than usual and my meds take a couple hours to kick in and I'll be in tears from the pain. I have some huge rice bags that I microwave and then put them on my legs.

I hope you get feeling better.
Susan

Jitterlegs
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Postby Jitterlegs » Sat Jul 19, 2008 4:49 pm

Thanks for the reply. Yes, I am done with Mirapex. I certainly don't want things likt this happening to me forever! Actually, not ever. The side effects were much worse than my RLS. This morning, my legs are back to "normal" finally after aching all day yesterday. It will be interesting, though, to see what the dr. has to say about it all. ALL I want is some good sleep! That will be my main point to her. Good night's sleep first, stop the RLS during the day second. I kind of think we are doing too many things at once to know what is and isn't working. CPAP, medication, iron supplements, etc.

Do you know if you can be bothered by RLS at night with not having PLMD? I don't seem to have a problem falling asleep at all, but something is causing me to go in and out of my sleep cycles 50 times an hour! I am jsut wondering if it is there enough to make me "arouse", but not enough to make me have PLMD?? I do get my best sleep AFTER I am supposed to be getting up, and my RLS is much better before I get out of bed. Could it be that my RLS has finally quieted down enough to get "good" sleep or am I just starved for good sleep? I have been really trying to tune in to it so I can best answer the dr.'s questions. She asked me if it was worse at night and I really couldn't say at first. Now, I know it is worse at night than the VERY first thing in the morning, but is it worse than it is at 2pm?? I don't know--depends what I am doing. If I am active, I don't even know it is there, but if I am sitting still it is. Very hard to explain and pinpoint when the worst symptoms are.

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Postby SquirmingSusan » Sun Jul 20, 2008 5:41 am

You could have circadian rhythm disorder in addition to the other problems. Several of us here have that. I know for myself, I get my best sleep between 8am and noon, and it's almost impossible to stay awake at that time of day. My doctor told me to give up trying to change it because it's very difficult to change. He said most people just eventually get night jobs. I work for myself and do much of my work at night.

Hopefully, though, even if you do have a CRD component to your sleep issues, it is mild and doesn't affect your life too much.
Susan


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