Dopamine Agonists and Augmentation

[ctravel12]

Hi Mack Some of what you said is true about drs starting out with a higher dosage then recommended. I took requip last year and was started out with the starter pak and did not have any problems and then my dr gave me a prescription for 2mg of requip and that is when the nightmares started. I took this med for 10 mos and had rls 24/7 (painful) not realizing that I was augmenting.

I went to a neurologist last October and he weaned me off of requip and got me on Mirapex and the mg that I took was .125 mg. If there is a starter pak I was not introduced to it. Now I am taking half of the .125mg around 4 pm and then about an hour before retiring I take .125mg and then 1mg of clonazapem and so far it is working great for me. Like I have said before what works for one may not work for another person. Believe me I wish I did not have to take any meds at all; howeve if this working I will keep on taking it.

Yes, I am waiting for the day that all drs have more knowledge of rls and what the right dosage of meds to be taken. I guess that until then it is just trial and error.

[KellyMarie65]

So my doctor told me today that the dopamine agonists, like the ReQuip I was given to take...does not cause augmentation. Only the drugs that include leva dopa like Sinemet. Now I know I've read everywhere that dopamine agonists can and do cause augmentation...and I'm pretty sure that what's happening to me after the 4-6 hour half-life of Requip wears off is augmentation (drastically increased PLMS/RLS). But doc says it ain't so. He is taking me off the ReQuip...and then says, oh just quit your Lexapro. No suggested alternative to cope with my anxiety and dysthymia...until I pointed out that I might need something. I'm pretty much done with this doctor I think.

I'm going in to see my GP tomorrow for a recommendation to another dr and a second opinion.

I wish I could find an answer for my rls. I was on zoloft 25mg daily and went off of it for the reasons your doctor said to go off your Lexapro. Well, my anxiety is back to being out of control and depression is kicking in. I still experienced rls while off of it. So, what is the answer. I had bad luck with ReQuip also and so don't want to start Mirapex. Ugh

[ViewsAskew]

Kelly, I'm sorry you are having such a hard time. What I am going to say may sound scary, but that's not my intent (to scare you). Just to hopefully help you work with your doc to make some decisions about what to do.

You know, there are few absolutes in RLS. The Zoloft may not have anything to do with the increased RLS. Or, as happened to one of our members, it may have permanently worsened it. This is NOT common, but it can happen. You may be someone who just HAS to have the antidepressant. Period. If so, it may be a lot of work to find the right drug or combo of drugs and/or non-pharma therapy that helps you find balance.

Per the Requip vs Mirapex, they work quite a bit differently in people. Some people can take both without problems, others can't take either, but a lot of poeple can only take one or the other. I am not pushing you to try it, just saying that it's possible that you won't have any problems at all with it. Especially if you and your doc work out a "low and slow" plan. That's to start with very low doses and then to increase the amount you take slowly. This helps eliminate side effects and seems to work much better. Dr Buchfurer once told me that even the tiniest amount of Mirapex could be helpful if taken with some other drugs (for those who had problems with in in other ways).

I can imagine that this sounds scary - no sure answers, trial and error, possibility of feeling worse, could take a long time, etc. But, we're here and can help you through it from an emotional perspective if that is what you want.

[Alan]

I have recently been started on Requip--I did advance the dose on the starter pack, and, I confess, did so a little faster than I should have, since I was having no side effects and not much effect on RLS. On the 1 mg dose, I noticed far fewer episodes of RLS, which in my case was primarily a problem when I tried to go to sleep. Most nights I fell asleep easily, and if I had RLS symptoms they were short and I was sleepy enough to overcome them. I was also tapering off neurontin at this time.

After a while I noticed that the RLS symptoms, though shorter, were oddly more intense and uncomfortable and even a little scary (sorry to be so vague--almost felt like an incipient seizure or something). I also had vivid dreams, mostly nightmares which did wake me in the middle of the night, though I could go back to sleep.

Eventually the RLS symptoms got worse and I, a physician (of course), chose to go up to 1.5, and when that didnt help 2mg. On 2mg, I intitially felt a little better, but recently I have had severe RLS of that scary intense quality. I have had to take codeine which does seem to help.

Having learned from the discussion group about augmentation, I have reduced the dose to 1mg. Is it better to stop the drug (for how long?), and then restart at the 0.5 or 0.25 dose? Anyone have experience with this? Or is Requip just the wrong drug for me?

I wish they would score the Requip tablets--would save a lot on unnecessary prescriptions if augmentation occurs.

I am also on Trazadone 50mg (which was a great help to me before I retired in reducing depression, and anxiety/depression related insomnia).

thanks for the support

[SquirmingSusan]

I wish I could find an answer for my rls. I was on zoloft 25mg daily and went off of it for the reasons your doctor said to go off your Lexapro. Well, my anxiety is back to being out of control and depression is kicking in. I still experienced rls while off of it. So, what is the answer. I had bad luck with ReQuip also and so don't want to start Mirapex. Ugh

I'm so sorry you're having so much trouble. Many of us here have struggled with the same issues. Personally, I had horrible augmentation on Requip followed by some of the worst depression of my life. Then I tried just about every medication listed in the Mayo Clinic Algorithm. Now my RLS is mostly under control, and so is my depression. Even though I know that my antidepressant likely makes my RLS worse, it does help with pain and I need it for my depression. Sometimes we just have to take what we take, and then take more RLS meds to cover the symptoms.

Please don't give up. It does take time to find a treatment that works for you, but eventually you'll find something and you'll be able to feel good again.

We're here to support you along the way.

[KellyMarie65]

Thanks everyone. I restarted zoloft at 12.5 mg in the am, the increased anxiety is not worth staying off of it. I take tylenol pm to sleep, I've been taking it for years, it has always helped me sleep even though I read here that it can aggravate rls. Maybe I should look into trazadone in a small dose (I'm sensitive to meds). I just can't afford any "hangover" feelings, I work alot during the week. I won't see the doc until January though unless I can call him earlier. Maybe 25mg of trazadone? I think that's the smallest I could get. I do take 1mg of Klonopin at bedtime but have been doing so for approximately 20 years so it probably isn't helping the rls as much anymore.
I do notice that I never had complaints of rls just 10 years ago, it seems to have gotten noticable within the last 5 years.

[SquirmingSusan]

Kelly, are you getting enough sleep to function? If not, please do call your doctor early. Trazadone is one option, but there are lots of other options. Maybe just a short-acting sleeping pill would help you?

[KellyMarie65]

Kelly, are you getting enough sleep to function? If not, please do call your doctor early. Trazadone is one option, but there are lots of other options. Maybe just a short-acting sleeping pill would help you?

I just have nights where I don't get enough of the deeper sleep that I need and I end up achy/tired all day.

[psychick]

Stick with it Kelly - it's a difficult road to stay on.
With my GP and therapist's supervision I cut my Lexapro dose in half for a few weeks to see how it affected the rls and whether i could cope with my anxiety/dysthymia- it was not a good choice and I'm back up to my standard dose. At this point, I'll take the rls over the dysthymia any day of the week. I also have a great deal of stressful complicating factors in my personal/professional life right now, so it's not a good time to be weaning off the ad!

I'm going to see my neurologist again in a few weeks and consult with him about what the next step should be to address the plms/rls.

[maddielouise1]

Kelly,

I also take an antidepressant (Cymbalta) and have just increased my Mirapex dosage to 1 mg. taken with .5 Klonopin and the RLS seems much more under control. I take the RLS medications at night since I was severely sleep deprived. My sleep is not perfect yet, but is much better and I keep hoping to see even more improvement. I understand that antidepressants can exacerbate RLS symptoms, but I'm going to have to learn to try to balance both problems and their solutions the best way I can. Good luck and I hope things get better for you. Maddie

[Alan]

Hello again--

It's after midnight--and here I sit after a horrible week of incredibly intense RLS symptoms---increasingly frustrated about how do deal physically and emotionally with augmentation on Requip. Since my last posting, i stopped Requip altogether, for about 5 days, but to my surprise the RLS seemed to worsen markedly AFTER I stopped. My symptoms were subjectively more intense, painful, generalized to legs, buttocks, shoulders and wrists, less responsive to codeine. I learned from all of you, that augmentation symptoms could last for weeks after stopping the Dopamine Agonists, but I didnt expect things to get worse after stopping. I began to wonder (perhaps this is due to my training as an MD) if I should go back on the Requip, and last night was desparate and sleep deprived enough to do so, taking 0.5 mg (I had been on 2mg for the last 2 months). I actually was able to go to sleep after taking it (was this just the course of the disease that night or really cause and effect?). I am really frightened that going back on will make things worse, or prolong the augmentation. The terror that this level of RLS will become my new reality for weeks, months, or forever makes it very hard to be rational about how to take meds. The anxiety may also be acting as a "trigger" as well.

Off Requip, by the way, I did notice that I was less drowsy during the day, and could read before bedtime (before I couldnt stay awake for more than a page or two). Also no nightmares.

I'm seeing my doctor in early Dec--I guess I should call him this week and at least get his take on things. Has anybody who augmented tried rechallenging with Requip at a lower dose? Do you think my worsening symptoms was a "rebound phenomenon"? How long does it take off the drug to really be able to assess whether the worsening of symptoms is drug related?

Thanks for listening--hopefully a second codeine will be kicking in soon so I can sleep.

[ViewsAskew]

Hi Alan, I'm sorry you're experiencing what many of us have experienced. The RLS is often much worse during this period. It took three tries for me to finally stop Mirapex. I just couldn't handle the intensity of the RLS and waking PLMs. A few people here have done it and I salute their stamina.

Many of us - and docs like Dr Buchfurer - have come to find that opioids are about the only hope during this time. And, usually, stronger ones. This period can last for several weeks. And, for a few, it stays with them even longer.

It's a tough decision as what to do. My doctor prescibed 3 in a row. I augmented on all three immediately. So, for me, the choice to try again as a primary drug is obvious. Not a chance. For you? I can't say I've heard of anyone who successfully went back to a DA after serious agumentation. And, to me, I'd define that a lot by how difficult stopping it is.

Once people augment to this degree, there doesn't seem to be any going back to the drug as a long-term solution. A few of us have tried it to no avail. I waited over two years and tried it only to help stop the PLMs - adding it to the methadone that keeps the RLS at bay...I augmented in a few weeks using a miniscule dose. Susan is trying it right now. She and I have thought that maybe taking it 4 days a week - literally 1/4 of the lowest dose tablet - and off 3 days might work.

Have you considered writing the Dr Buchfurer? He is at www.rlshelp.org. He usually answers emails in a day or two. He'd be one to ask what the best options are.

[SquirmingSusan]

Hi Alan,

So sorry you're going through that. I had a horrible time when I quit taking Requip because of augmentation. Fortunately there was Vicodin in the house that settled it down immediately until I could get a "real" prescription from the sleep clinic. I can't imagine having it made it through that time without something strong. The pain was so intense, and if you would have seen me you would have thought I was having convulsions, I was squirming so bad.

It's been about 10 months, and now I take methadone which controls the RLS/pain, or painful RLS, or whatever you want to call it. And, as Ann said, I'm experimenting with a teeny, tiny dose of Mirapex to help with the PLMD. I get the PLMs while awake, and much worse in the evening. I'd hate to see how much I kick while asleep. It really does help with the kicking/jerking even at that tiny dose. It's tempting to try an additional dose, but I'm going to be very careful if I do.

Unlike Ann, I never did try another dopamine agonist after my Requip experience. That was enough to make me refuse all attempts by doctors to give me Mirapex or Sinemet. That stuff made me moody and depressed, and at some point suicidal, and it took a couple months to regain my emotional balance (although my family might argue that I never did, lol).

I'm pretty sure that if I had stayed at the starter dose of Requip, and not advanced the dose as instructed in the starter pack, that I wouldn't have had so many problems with that drug. Although even the starter dose seemed to high for me; I had terrible side effects.

So 10 months out I'm trying the tiny dose of Mirapex, just for the kicking and body jerking. And so far, so good. If it keeps working well maybe I'll ask about trying the Neupro patch, but I doubt that comes in a small enough dose for me.

Remember, I am not a doctor. Your experience may be nothing like mine. Best wishes with it. You'll get through it, really. But it can take a long time to get it all sorted out.

[Sojourner]

Hi Alan, Sorry you are having such a rough go of things right now. I can't add much to the previous threads other than to say I did not have a good experience with requip and to this day believe it resulted in plmd. But, that's just my opinion. So, keeping that in mind and having read many other posts somewhat on topic..."fool me once shame on you, fool me twice shame on me." I think the comments regarding asking you doc. for something else (like vicodin) to help you get through this would seem most reasonable. You could re-evaluate from there and hopefully come up with a more successful regimen. Best of luck to you, my friend.

M.

[Polar Bear]

Hi Alan, sorry you are having these diffs with requip and augmentation. I have been fortunate, OK I have rls pretty much 24/7, but it was that way kinda, prior to starting the requip.
What I do want to say is that I have emailed Dr B several times over the last few weeks and have had a response within 24 hours. Last time the response was in one hour.