Getting off of Requip due to augmentation

Use this forum to discuss any issues associated with Augmentation
badnights
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Re: Getting off of Requip due to augmentation

Postby badnights » Wed Oct 11, 2017 4:26 am

It makes me angry that you have to go through this. It seems to me that she should have granted you at least a few months of peace :evil: , but preferably, she should just keep prescribing the medication that is allowing you a semi-normal life. Would she be able to do her job if she woke up for an hour every night? She should be prescribing what works and worry about fighting whoever there is to fight if they ever call her out for it, and not until then.

Rant over. I'm glad your symptoms are much better, and congratulations on the whole procedure, and sticking to your guns. I hope the Lyrica will indeed be enough on its own! And if it's not, and she refuses to get a backbone, there's always kratom!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Ladyslider
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Re: Getting off of Requip due to augmentation

Postby Ladyslider » Thu Oct 12, 2017 3:24 am

I have been trying using only the Lyrica. It doesn't do anything for the RLS. It does make me sleepy but I need my legs to be still. I don't have a problem going to sleep. I end up getting up and taking the 10mg of Oxycontin. My neurologist did mention she may refer me to a pain doctor if I continued to need the opioid. They can and are allowed to prescribe opioids. That means I have to educate another doctor on RLS and opioids as a legitimate treatment. I have all my articles and the book "Clinical Management of Restless Legs Syndrome" Second Edition that my neurologist used.

I just finished listening to the webinar Dr. Buchfuhrer did where he did nothing but answer questions. Great webinar. It will be posted on the RLS.org website.

badnights
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Re: Getting off of Requip due to augmentation

Postby badnights » Thu Oct 12, 2017 3:55 am

Nice.
Beth - Wishing you all restful sleep tonight
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leggo_my_legs
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Re: Getting off of Requip due to augmentation

Postby leggo_my_legs » Fri Oct 13, 2017 7:10 am

badnights wrote:It makes me angry that you have to go through this. It seems to me that she should have granted you at least a few months of peace :evil: , but preferably, she should just keep prescribing the medication that is allowing you a semi-normal life. Would she be able to do her job if she woke up for an hour every night? She should be prescribing what works and worry about fighting whoever there is to fight if they ever call her out for it, and not until then.

Rant over.


Epic rant. Made me feel better today just reading it. :D

Ladyslider
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Re: Getting off of Requip due to augmentation

Postby Ladyslider » Fri Oct 13, 2017 1:42 pm

I can’t believe prescribing a nightly dose of OxyContin for RLS would be a big deal. I think all this opioid stuff has gone overboard.

crackedvessel
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Re: Getting off of Requip due to augmentation

Postby crackedvessel » Fri Nov 10, 2017 3:23 am

I've been on 4.5 mg of ropinerole plus 300mg of gabapentin nightly for 15 years at least. My doctor is an RLS specialist. I don't take opiates or narcotics for any reason, ever, due to past experience. I have gotten through three periods of augmentation during my time on Requip without withdrawing from it completely. I consider this drug to be a lifesaver for me: I was close to suicidal before finding the right doctor and the right dose, and from what I've heard withdrawal is far worse than augmentation. In my experience - and I can only speak from my own experience - augmentation is temporary. I didn't say short, but I did say temporary. Shortest, 3 weeks, longest, almost a year. In the longest instance, the requip was dramatically reduced and the gabapentin increased, and I can't say it wasn't tough. But all in all, I was able to stay on the requip, which is good because I tried everything else. This combo os the only thing that works for me.

Ladyslider
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Re: Getting off of Requip due to augmentation

Postby Ladyslider » Fri Nov 10, 2017 1:18 pm

I'm glad you have found a combination that is working for you. The thought of going thru augmentation again is terrible. I feel SO much better being off the Requip. I'm taking Lyrica 100mg and Oxycontin 10mg which has made me virtually RLS free:) Once in a while I have some breakthrough RLS but it's mild when it does occur. I'm sleeping again and not feeling drugged all day. Hopefully my neurologist will continue this regimen since it works for me. The opiate issue is hopefully not going to be a problem getting the medication that is working for me.

I've submitted paperwork to Emory University Sleep Center to see an RLS specialist there. I just waiting to hear back and hopefully get an appointment to see an RLS specialist. Hopefully they may have suggestions for controlling the RLS other than what I'm doing now though I'm not having any problems with the medication regimen I'm on now.

badnights
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Re: Getting off of Requip due to augmentation

Postby badnights » Sat Nov 11, 2017 4:40 am

crackedvessel, I shudder to think of a year spent augmenting. Although withdrawal is more intense than one's current level of symptoms, whatever they are, augmented symptoms will continue to get worse as the dose increases, so eventually you will be at a level of symptoms that is worse than the withdrawal from your previous level of symptoms would have been.

However, if you can keep the period of augmentation to three weeks, that would certainly make a person think twice about going through three weeks of withdrawal without opioid support instead!

I'm happy to hear of your success with managing augmentation this way. I assume you lower the ropinirole dose for a period of time until the symptoms return to your pre-medication baseline? Have you found that the augmentation lasts a shorter time if you catch it sooner?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

badnights
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Re: Getting off of Requip due to augmentation

Postby badnights » Sat Nov 11, 2017 4:41 am

ladyslider, you sound like you're on the right track with your current meds and the Emory visit. :D :D
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

crackedvessel
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Re: Getting off of Requip due to augmentation

Postby crackedvessel » Sat Nov 11, 2017 7:08 am

badnights wrote: I assume you lower the ropinirole dose for a period of time until the symptoms return to your pre-medication baseline? Have you found that the augmentation lasts a shorter time if you catch it sooner?


Yes, the long augmentation was the first one. I didn't know what was happening so I just kind of toughed it out, in denial, I guess, and tried to manage it on my own without talking to the doctor for a good part of that time. Since then I've learned to spot it coming and start lowering the dose early, and it's definitely shorter. I'm willing to go through it, though, rather than take the risk of opioids, which my own experience doesn't suggest is being overblown at all, despite what some here might feel. I watched a lifelong teetotaler, not an addictive cell in his body, get on that drug for very legitimate reasons at age 47. Then slowly, almost imperceptibly, I saw his brain begin to send his body more and more pain signals in order to spark delivery of more and more drugs. By the end of it all, he was a shell of his former self, literally trolling parks looking to buy pills. I know everyone thinks it can't happen to them, but it happens to lots of people, which is why doctors are so cautious. If RLS sufferers are getting relief from these medications and are being well managed by physicians, that's great. But so few doctors understand RLS that patients can end up calling the shots without even realizing they're doing it. I also know there are people who truly can't tolerate DA's, like those who experience life-altering compulsive behaviors as a side effect, and for them this may be the only path. I feel lucky not to have to take that route after seeing what I've seen.

Ladyslider
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Re: Getting off of Requip due to augmentation

Postby Ladyslider » Sat Nov 11, 2017 9:38 pm

badnights wrote:ladyslider, you sound like you're on the right track with your current meds and the Emory visit. :D :D

Thanks. I feel the best I've felt in years. I'll keep you posted on my visit with the RLS specialist.

badnights
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Re: Getting off of Requip due to augmentation

Postby badnights » Sun Nov 12, 2017 8:11 pm

@crackedvessel
I think it's important to have your story here, so that people know that augmentation can be treated that way (by lowering the dose of the DA and toughing it out, then raising it again), at least for some people. Another thing you might successfully try is switching DAs when you first note the signs of augmentation. A 2016 paper reported on three cases in which patients cycled among rotigotine, ropinirole ER and pramipexole ER ( note that these are all long-acting dopamine agonists).

I will note that, in this mode of treatment, the patient is doomed to augment (i.e. suffer) before a switch is made, however, this might be the best alternative for some people. I am curious about how long the cycling can go on before it no longer works but I suspect that a person might be able to keep the DAs effective for longer by rotating through them, rather than staying on one. I also worry about the possible long-term effects of dopamine agonist use in WED (a number of us feel our symptoms were permanently worsened by augmentation). But for people for whom opioids are not a viable alternative, it has to be encouraging to hear your story. We don't often hear of your mode of augmentation treatment here, and it's good to have it brought up.

Opioid treatment also is appropriate for some people but not for all. Doctors and patients both have to be on the alert for warning signs of addiction. I have had no problem whatsoever with it; maybe it helps that I have never felt a high or euphoria or a pleasant state of any kind from taking them. If I had, I would have to watch myself even more carefully, to be sure I was taking medication only for my WED symptoms, and only in the prescribed daily amount.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Ladyslider
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Joined: Wed Sep 06, 2017 3:46 pm

Re: Getting off of Requip due to augmentation

Postby Ladyslider » Sun Nov 12, 2017 11:47 pm

badnights wrote:@crackedvessel
I think it's important to have your story here, so that people know that augmentation can be treated that way (by lowering the dose of the DA and toughing it out, then raising it again), at least for some people. Another thing you might successfully try is switching DAs when you first note the signs of augmentation. A 2016 paper reported on three cases in which patients cycled among rotigotine, ropinirole ER and pramipexole ER ( note that these are all long-acting dopamine agonists).

I will note that, in this mode of treatment, the patient is doomed to augment (i.e. suffer) before a switch is made, however, this might be the best alternative for some people. I am curious about how long the cycling can go on before it no longer works but I suspect that a person might be able to keep the DAs effective for longer by rotating through them, rather than staying on one. I also worry about the possible long-term effects of dopamine agonist use in WED (a number of us feel our symptoms were permanently worsened by augmentation). But for people for whom opioids are not a viable alternative, it has to be encouraging to hear your story. We don't often hear of your mode of augmentation treatment here, and it's good to have it brought up.

Opioid treatment also is appropriate for some people but not for all. Doctors and patients both have to be on the alert for warning signs of addiction. I have had no problem whatsoever with it; maybe it helps that I have never felt a high or euphoria or a pleasant state of any kind from taking them. If I had, I would have to watch myself even more carefully, to be sure I was taking medication only for my WED symptoms, and only in the prescribed daily amount.


I have never had a high or euphoric feeling from the 10mg of Oxycontin that I'm on. When I don't take it to see how I'm doing the restless legs kick in and I'm pacing the floor for most of the night. I agree with Badnights that having people's experiences posted does help. I've augmented on both Mirapex and Requip. I tried the Neupro patch however I ended up with bad skin reactions from it. I also was on Sinemet until it also made my symptoms worse. So I have been through the dopamine agonists over the years of battling RLS. I'm thankful the Oxycontin is working along with the Lyrica because I'm about out of options otherwise. If you don't have to or need opiates to control your RLS that's good however I'm glad they work for those of us that have exhausted all other medication options. Hang in there and keep us posted on your progress.


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