Dose of Requip too low?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
FormerMermaid
Posts: 11
Joined: Thu Sep 25, 2008 1:36 pm
Location: Pittsburgh, PA

Dose of Requip too low?

Post by FormerMermaid »

Hello everyone, I have mild RLS which has been bumped up to a whole new level by taking an SSRI (I posted here one other time about what kind of doctor to see). I can't give up the SSRI right now, so I'm going to a sleep clinic next month. To get me through until my appt. rolls around, I asked my psychiatrist for help with the RLS and he prescribed Requip. He wrote a prescription for .5 mg, and said to start with 1/2 a pill for a 2-3 nights then go to a whole pill. That was a month ago. It worked at first, but for the last couple weeks, I've noticed I've still got restless legs at night despite taking the pill, plus now they are starting to act up in the afternoon if I'm in the car for too long, or sitting still at my desk. Forget about taking a nap, it's out of the question. This never used to happen. Also, it seems like before starting the Requip it would take about 10-15 after lying down at night for the RLS to start. Now it seems to only take 3-5 minutes. My questions for you are: is this augmentation? Would the best next step be to increase the dose of Requip or to switch to another drug? I will see my psych tomorrow evening. He doesn't seem terribly knowledgeable about the finer points of RLS treatment, I think if I tell him my current situation he will tell me to increase the dosage and/or start taking it earlier in the day. I wanted to check with you guys to see if that really is the best course at this point, until I can get in to the sleep clinic. Any thoughts or advice is greatly appreciated.
Thanks in advance,
Andrea

Neco
Posts: 2297
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

It's possible that this may be augmentation..

For some people increasing the dose and then spreading it out between two or three doses a day can help and they get by OK, and for some adding a moderate strength painkiller like Ultram (Tramadol), or Tylenol #3, or Hydrocodone to the regime will help, however if its real augmentation then you need to get off the Requip ASAP.

You can try Mirapex next, but if that does not solve the problem, or makes it worse you need to stop dopamine agonists and never take them again.

At this point options are, Lyrica, Neurontin, a benzo like Klonopin, or opiates. (Tylenol w/codeine, Vicodin(Hydrocodone), Oxycodone, Morphine, Methadone, are all options based on severity).

Click the link in my signature for the Mayo Clinic Algorithm and print it out, so you can take it to show your psych. Its one of the best documents we have for establishing treatment protocols based on RLS severity and past medications that have been tried..

If your psych is OK with opiates and can prescribe any of them, then you may want to go with those.. Opiates are the best treatment out there, and work pretty much 100% of the time except in rare cases.. It seems like you have symptoms that are now approaching a 24/7 cycle. So a controlled release opiate would be a great medication in this case, because you slowly get your dose over a few hours and should only need one or two doses a day if you're lucky..

The IS a controlled release Requip, called RequipXL, so that may give you better relief than regular Requip too - but if it is augmentation I doubt it'll make much of a difference.

I wouldn't recommend a benzo at all, as while some people actually do get symptom reductions or relief, they seem to be a small minority, and the rest of us simply get knocked out so we can sleep through the symptoms - which is not really treatment or relief if you ask me.

If you do stop dopamine agonists, there will be a temporary period of a couple weeks where your RLS will actually get much worse as your body readjusts. Opiates are recommended for this period by most experts if I recall correctly.. Usually something like Oxycodone. Someone with more experience on that can give you some info I hope.

So again, click the link in my sig and print out the Algorithm, read it over yourself, and then show it to your psych, and outline any points you think he should consider when you show it to him.

FormerMermaid
Posts: 11
Joined: Thu Sep 25, 2008 1:36 pm
Location: Pittsburgh, PA

Post by FormerMermaid »

Hi Zach, thanks so much for the detailed response. The problem with the algorithm is that before I brought the RLS up to my psych a month ago, I mailed him the algorithm and asked if he would call in something based on it, because I was miserable and couldn't wait till my next appt. His staff called me the following day to say he got my letter and would talk to me about it at the next appt. Sigh. So I toughed it out, and when the next appt. finally rolled around and I mentioned having sent him the Mayo clinic document, he acted as if he had never even seen it, let alone read it. He didn't bother to look in my file to see if it was there, he just grabbed his PDR and looked up Requip (because he knew it's prescribed for RLS) and wrote for the starting dose. He had never even heard of Mirapex.
I don't think my insurance will cover Requip XL but it might, I will check. Maybe that's what I need. Or maybe bumping the dose to 1 mg will solve the problem and I won't even need to go to the sleep clinic. Got to think positive.
Thanks again for your quick and thorough response, it's nice to have someone to talk to who understands and has been there.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Hi FM,

I think I look at augmentation a bit differently from many because of how difficult it ended up making my life.

There are two schools of thought regarding augmentation. Zach has mentioned what it is - simply when a dopamine agonist 9DA) makes the RLS stronger or more frequent....or both. That includes moving to new body parts and causing PLMW - periodic limb movement while waking.

The first school says, increase the dose or change to a different DA. They will do this until the RLS is pretty bad or until you've gone through 2 or 3 DAs.

The second school, having watched what people sometimes go through with the DAs, says, once you augment - especially if it happens quickly (less than a year or more of taking the drug), then immediately STOP the DAs, and move on to another category.

I don't know if one is more "right" than the other, but having been treated the first way, I sure know that if I could have a do over, I'd MAKE my doctor take the second route. I was miserable for almost 2 years, with escalating RLS, escalating doses, escalating psych effects, escalating wieght gain, etc. In the end, after almost two years, I went from mild RLS to severe RLS that isn't treatable by anything except strong opioids.

Now, maybe that last part - the severe RLS - would have happened anyway. Maybe the lengthened augmentation didn't cause it. But, it did cause the discomfort and pain of 2 years of escalating everything, except sleep, which decreased to the point that I only slept .5 to 3 hours a night for many months.

If it were me, I'd do anything I could do find someone who would listen to me and help me. I'd not continue the Requip. But, that's me. Only you can decide what will work for you.

Lastly, not sure how many meds you've tried before you settled on the SSRI you are on now, but many people do better (in regard to RLS) on one than another. It could be that switching that would decrease the RLS so you wouldn't need anything for the RLS, or that it was mild enough you could get away with taking something intermittently, only when the RLS was bad enough to interfere with sleep.
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.

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

You said in a previous post that your psych won't prescribe benzos or opiates, so your best bet is to get into a sleep clinic ASAP. There is a possibility that an anticonvulsant like gabapentin or Lyrica might help, but once you have augmentation, it's more likely that you'll need an opioid to knock the RLS back down for a bit.
Susan

Neco
Posts: 2297
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

I hate to disagree with others, but I still very much doubt the validity of going to a sleep clinic and having a sleep study at all.. Unless I misunderstand what a sleep clinic is.. If its just a clinic where they treat various sleep affecting disorders and not just about sleep studies, then by all means look into findind one.

But as far as anything to do with a sleep study - you already have your diagnosis so I wouldn't bother with that, and I've also never seen any credible source that claims sleep studies are necessary to diagnose RLS (quite the opposite, a sleep study can't identify RLS any better than a verbal discussion with your doctor)..

Moving along from that train of thought though... Yes, you HAVE to be proactive with your treatment. You have to find a physician who will treat you properly, and consistently push that physician to treat your symptoms with appropriate meds, without being forced to take something infeffective or unsatisfactory.

If you really are augmenting and need to get off DA's you have got to push for alternative medications.. Lyrica or Neurontin have good potential and help a good number of people, although some are left with groggy side effects that are no better or worse than benzos..

Ultimately you need to find a doctor who won't discount ANY possible class of medication, including opiates. Make it clear you are willing to try other things first, and then only ask for opiates if nothing else is working, etc. Some doctors are more receptive to that approach, or can be pushed into that approach with enough badgering.

Bottom line. Living without quality of life isn't really living at all. It's YOUR quality of life, you have to suffer when its bad - NOT the doctor. So you have to be strong and advocate for yourself.. Even if it means going through 10+ different doctors to find one who will listen and treat you with the right medication.

FormerMermaid
Posts: 11
Joined: Thu Sep 25, 2008 1:36 pm
Location: Pittsburgh, PA

Post by FormerMermaid »

I really appreciate all your thoughtful and thought-provoking replies. ViewsAskew, I'm sorry to hear you had such a hard time before finding the correct treatment. I think it's great that you are willing to share your experience to help others avoid such an ordeal. I am going to keep my fingers crossed that this isn't augmentation, partly because it's only been a month since I started the Requip. Isn't that a little short to be augmenting? Now that I know what to look out for, I will be more careful about how long I go along with the doctor's recs before questioning or even finding a different MD. As for the SSRI's I have tried Prozac, Effexor, and Zoloft and they all caused the RLS to intensify quite a bit. Since I've finally got a pretty good handle on the depression with Celexa/Wellbutrin/Ritalin combo, I'm reluctant to tweak that right now.

Susan, it's actually my family doctor who won't prescribe opioids, I don't know where my psych stands on that yet as it hasn't come up.

Zach, I totally agree that I don't need a sleep study per se, I'm going in for a consult first with a doc at a the local hospital's "Sleep Disorders Center", if anyone's interested here is a link: http://www.wpahs.org/agh/services/index.cfm?mode=view&medicalspecialty=184 When I called the receptionist was all set to schedule me for a sleep study right away, but I requested a consult with the doctor first and that will happen on April 2. I'm hoping he can treat me as you said based on a verbal description of my symptoms; I don't think I need to do the study and will resist if they try to push it. Just curious, how many of you have undergone that evaluation? Was it helpful? I was under the impression it's commonly used for diagnosing sleep apnea, and I think this center is geared more towards treating that. The doctor I'll see is a pulmonary and critical care specialist.
Thanks again, this board is a great resource. I will let you all know what my psych says tomorrow. Maybe in the meantime he will have actually read the algorithm (but I doubt it). :roll:

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

FormerMermaid wrote:I really appreciate all your thoughtful and thought-provoking replies. ViewsAskew, I'm sorry to hear you had such a hard time before finding the correct treatment. I think it's great that you are willing to share your experience to help others avoid such an ordeal. I am going to keep my fingers crossed that this isn't augmentation, partly because it's only been a month since I started the Requip. Isn't that a little short to be augmenting? Since I've finally got a pretty good handle on the depression with Celexa/Wellbutrin/Ritalin combo, I'm reluctant to tweak that right now.

I'm hoping he can treat me as you said based on a verbal description of my symptoms; I don't think I need to do the study and will resist if they try to push it. Just curious, how many of you have undergone that evaluation? Was it helpful? I was under the impression it's commonly used for diagnosing sleep apnea, and I think this center is geared more towards treating that. The doctor I'll see is a pulmonary and critical care specialist.
Thanks again, this board is a great resource. I will let you all know what my psych says tomorrow. Maybe in the meantime he will have actually read the algorithm (but I doubt it). :roll:


Hi again,

Thanks for the empathy -it truly is hard to understand until you've been there....as unfortunately you are.

I augmented in a week, so a month is not too soon. It's not common, but it IS possible. The only way to tell is to stop the Requip, wait a few week, and see what happens. If it's augmentation, it often gets worse for a few days to a few weeks after you stop the med, then it goes back to its prior level. So, that's one way to find out.

Per the sleep study...I think they are valid in some cases, but certainly not all. 1st, it can help a reluctant doctor make the diagnosis. Should he or she need it for and RLS diagnosis? No! 2nd, it can diagnose PLM - which can be significantly problematic. In fact, that's the reason I was taking a DA - not for RLS. It just happened to make my RLS worse. 3rd, it can diagnose other sleep issues you may not know you have.

Now, if you're pretty sure it's "only" RLS, then a sleep study may not be of much help, especially if the doctor "gets" RLS. But a sleep doctor at a sleep clinic is likely to want that study - it's what they do.

It's great to hear you have a handle of the rest of stuff using the meds you're using. I wouldn't mess up a good thing! So, sounds like you're working at this the right way.

I just hope a sleep doc will get it. They need to see a much larger picture, it's not "just" the RLS as the RLS is being caused by something else. Many of us find it hard to find a doctor who gets this bigger picture. I'm struggling to find one right now...

Oh - the doc you are seeing...did you have a choice? Just wondering how a pulmonary /critical care specialist will see this....not sure. I'll be looking forward to an update. I hope it's good news, both from the psych and the sleep doc.
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.

snowbound
Posts: 98
Joined: Tue Nov 20, 2007 1:48 am
Location: Big Smoke
Contact:

Post by snowbound »

What is the instance of augmentation? Is it quite common or rare in most cases? It's scary to me to think if it happens it could make things worse, possibly permanently.
A man generally has two reasons for doing a thing. One that sounds good, and a real one. ~ J. Pierpoint Morgan

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Snowbound, there aren't good studies regarding it. That's because most studies to get approval are for only 2-4 months. In those studies, the incidence is 10% for Requip, a bit higher for Mirapex.

But, over time? Say within 2 years? I'd guess it's much higher, but that's just my gut feeling, not based on anything scientific.

The good news is that all you have to do is KNOW about it so that if it happens, you're ready and you know if you're going to stop the drug, or try to increase it. It's the people and the doctors who don't know about it that end up with patients in difficult situations.
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.

FormerMermaid
Posts: 11
Joined: Thu Sep 25, 2008 1:36 pm
Location: Pittsburgh, PA

Update

Post by FormerMermaid »

Well, I saw the pysch last night and as expected he increased the dosage of Requip. He said to take 1mg at night and .5 at mid-morning for the daytime symptoms. So last night I took my first 1mg dose, but I still had symptoms and it took me about 2 hours to finally fall asleep. I'm wondering if I'm taking it too late. The instructions say to take it 1 hour before bedtime, but maybe it would work better if I took it earlier. Only one way to find out, I guess....would appreciate hearing others' experiences with this.
This morning I have a dull, low-grade headache which I'm attributing to the increased Requip, since nothing else has changed and I don't generally get headaches in the a.m.
Also, my psych said it's not necessary to get a good night's sleep every night, if you get 3 - 4 per week that's enough. :o This was in the context of him telling me to reduce my Ambien usage. I've taken Ambien every night for the past 2 years at least, and he wants me to only take it 5 nights/week. I have other issues that caused insomnia even before the RLS problem, and Ambien was the only way I could fall asleep at all. I'm really looking forward to my appt. at the sleep clinic, maybe I can get all these issues on the table and sorted out at last. And Viewsaskew, thank you for suggesting I reconsider the benefit of a sleep study, I've decided not to resist if they suggest it because obviously there is more going on here than RLS. And my husband tells me even after I fall asleep my legs are kicking and jerking, so as you said it sounds like PLM might be involved as well.
Finally to answer your question, at the sleep center there were 3 doctors to choose from, I picked the one with the soonest availability The receptionist recommended the one I chose, she says he has a very nice "bedside manner" and doesn't quit until he gets to the bottom of your problem. She sees him herself and seemed well satisfied with his care.

Neco
Posts: 2297
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

Well even though someone may recommend him, its hard to judge a doctor until you see them yourself. Referring patients are often biased, and rightly so, as they feel they are getting the help they need and the doc is great in that regard.. Nothing wrong with that, however.

I hope it goes well for you.

Requip also gave me wicked headaches, I think within the same dose range. As for taking it earlier, a lot of people do that and it helps them a lot. Generally you need to take a DA an hour or two BEFORE you expect your symptoms to show up. Once you are already experiencing symptoms, medication is either ineffective, or it takes a lot more to get them under control. I have the same problem with opiates after strenuous work hours. Like right now, I've been up since 4am and did my custodial work at J.C Penny, then I got called to merchandise a store in town, which I just got done doing. So I've been on my feet 7 hours, doing physical labor. My legs and ankles are killing me, but hopefully the Methadone will kick in soon.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I like that he won't quit until he figures it out! I hope that is true.

Yeah, as Zach said and you inferred, take the Requip a bit earlier - at least 60-90 minutes before the symptoms bother you. The problem happens when they bother you all the 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.

softtail
Posts: 14
Joined: Fri Apr 03, 2009 6:26 am

a requip junkie for 4 years

Post by softtail »

As Zach knows, I just went thru a very scary ordeal , dumping Requip after taking it for 4 years. At first it was a miracle drug, took away my twitches, allowed me to sleep, and since I have severe PLMD. I was able to sleep with my wife without knocking her out of bed. the Requip solved all my problems at first and gave me more energy than ever before.


Then the augmentation kicked in, but during the day, I lived with it , could get up move around, and by increasing the dose , sleep still came , at night.

Eventually it caught up with me, got to 4 mg per night, and sleep left as the symptoms would not really subside very long.

So I dumped the requip and got on the opiats oxycodone. everything looked fine for about 4 days, then I felt like My whole world was coming apart, depressed , anxious, panic. Still don't know to this day whether it was the depletion of the dopamine agent, that finally caught up to me, or something to do with the oxycodone, which I really don't believe, cause it worked great for my symptoms from day one once I quit the requip

I ended up seeing a sleep disorder specialist , on Rls, and she put me on
Clonazopan on an increasing dose over 2 week period. Gotta tell you the first 4 days I never slept, an hour, I was a zombie.

She wanted to use only one drug at a time , but seeing I wasn't sleeping , she did a strange thing. she reintroduced requip to my nightly schedlule at a 1/4 the strength I used to take. she said she knew this would most likely augment again down the road, but because she knwe it worked for me for so long. for the time she was getting the Benzio's up to the titration level in my body she wanted it at. she knew it would control my symptoms for the short term

Guess what , it worked, For 2 weeks now I am pretty much back to normal, actually better normal.
no symptoms for the most part during the day , and sleeping regularly now , withthe requip , clonazopan combination.

Side efffect. drowsiness during day, but each day and week gets better, as I get used to drug. She does not have a plan to keep me on the requip, but actually introduce opiate down the road, but insists its one drug at a time , even might throw in wellbutrin if depression persists.

Point being. something out there will work for you. Rls , for now is forever, and no one opinion or approach will work for everyone.

I know what all of you are going thru. Scary , very scary. Zach knows
I am taking it one day at a time. enjoying the fact that most of my symptoms are mild or gone for most of the day, and loving sleeping thru the night. Side effects are acceptable for now.

one day maybe they cure , otherwise don't stop looking for ways to control the symptoms and get thru the days.

Get everything on Rls you can find . like the RLS rebel book, good read and some of the Bota's work.... hot bath for me. and walking.
good luck , don't give up, and be willing to try anything , its your life.
softtail

FormerMermaid
Posts: 11
Joined: Thu Sep 25, 2008 1:36 pm
Location: Pittsburgh, PA

Post by FormerMermaid »

Hi Softtail, thank you for sharing your story with me and for the encouraging words. It's heartening to know someone has found relief even if you did have to take a long hard road to get there. For now, the solution for me has been to decrease the doseage of SSRI I take, so far this has not caused a return of my depression symptoms. I am still taking requip and it seems to be controlling the RLS fairly well, although I have to be careful to always take it with a full meal or it will cause nausea. I still need Ambien to fall asleep but I'm doing a lot better than I was on the higher dose of Celexa. I got the results of my sleep study in the mail, it said I had PLMD and to practice better sleep hygiene. It reported 84 leg movements, I think it was 125 arousals and 24 awakenings during the 6 hours I was there. Also very delayed onset of REM sleep. I have not yet had a chance to discuss these results with my doctor as he is out of town, I will see him on May 21. I suspect he will tell me to just keep taking the Requip. I would love to be able to sleep through the night, even on Ambien I wake up at least 3 times per night but at least I'm getting enough sleep to function fairly well during the day.
It sounds like your doctor knows what she's doing and that alone is a blessing. Good luck with your new regime, also what is the Bota?

Thanks and best wishes,
Andrea

Post Reply