Is your DA causing augmentation?

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sandy9356
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Re: Is your DA causing augmentation?

Postby sandy9356 » Tue Feb 14, 2017 5:45 pm

So...after some discussion with the neurologist, I am reducing the mirapex from 2 mg to 1/2 mg 2X per day and eventually plan to stop it completely. She would like me to start on Sinemet 2 X / day and continue the Tramadol 2 X / day. I have read so much that I am not sure if this is a good plan to eliminate the Mirapex and possible get some relief from the augmentation. Any comments would be greatly recommended. This is getting very expensive!! Is the Sinemet just another drug of the same category?

stjohnh
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Re: Is your DA causing augmentation?

Postby stjohnh » Tue Feb 14, 2017 6:16 pm

Yes, Sinemet is a DA (dopamine agonist) like Mirapex, Neupro, and Requip. Using Sinemet in this way is not the usual treatment for augmentation.
Blessings,
Holland

Polar Bear
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Re: Is your DA causing augmentation?

Postby Polar Bear » Tue Feb 14, 2017 7:09 pm

Sinemet is a DA that works but it is VERY VERY prone to augmentation.

It is useful in certain situations in that it will work very quickly so is great for a flight or 'one off' usage. Some sufferers use it to take for a couple of days and then switch to another medication for a few days.

It is definitely not for continued daily use.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Tue Feb 14, 2017 7:31 pm

There is a belief that there is a relationship between how fast a DA works and the probability of augmentation. Sinemet is the fastest acting DA and has the highest probability (almost certain) of causing augmentation. Mirapex and Requip work somewhat slower and thus are less likely to cause augmentation. Neupro is the slowest acting DA. It was initially thought that it might not lead to augmentation, but it has since been show that it does.

But since you are taking Tramadol, a mild opiate, and it can help cover the DA withdrawal issues, it may be that you doctor intent is to have the Sinemet help with the transition until she eventually takes you off of all DAs. I am trying to guess your doctor's intent, which is fraught with peril, but maybe that was her thinking process.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Wed Feb 15, 2017 9:46 am

sandy9356:
Steve is trying to give your doctor the benefit of the doubt, but I would guess that your doctor is fairly ignorant of augmentation, and is recommending Sinemet out of ignorance.

Sinemet is not technically a dopamine agonist (DA) but it is a "dopamine medication". As I understand it, it's equivalent to putting dopamine in your body, whereas a dopamine agonist stimulates the dopamine receptors, but is not actually dopamine. Subtle difference. It's OK to call them all dopamine meds, but Sinemet is not technically a dopamine agonist, iiuc.

I cannot imagine how Sinemet might help in your withdrawal, and can only see how it might exacerbate the situation.

So far, I have only read the negatives to the DA but what do others use that does not result in this level of augmentation. Do you need to completely withdraw from the DA before starting a different drug?


Steve has answered this well, note especially that only the dopamine meds cause augmentation (though there are a couple of anecdotal cases of Tramadol causing it). I will only add, in terms of what do others use, that we use opioids, or we alternate between an opioid and a DA (the alternation forestalling augmentation), or we use a DA with an alpha2delta or an opioid with an alpha2delta (the combination allowing a lower dose of each). And a few of us use only an alpha2delta, which tends to work only if the WED is not severe. And some of us use kratom, a herb with opioid-like properties (or maybe contains actual opioids - someone else please clarify).
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: Is your DA causing augmentation?

Postby badnights » Wed Feb 15, 2017 10:08 am

sleepy angel wrote: I thought that Augmentation has to do with one's rls getting worse after you've gone on medication(s) and it indicates your body tolerates the meds and you get your symptoms earlier in the day--- maybe requiring a higher dosage?


Augmentation is only caused by dopamine medications in people with WED/RLS. It is something different from tolerance, which can happen with any medication in anyone. Tolerance does not worsen the condition the medication is treating. Augmentation is when the condition is worsened by the medication that was supposed to improve it. Augmentation is not common outside the world of WED/RLS, in fact the term was coined to describe what happens from DA use in WED/RLS. It does not happen with other meds, only the dopamine meds.

A lot of doctors don't understand what augmentation is when we tell them, not until they've had a chance to look it up. It is not a common sort of thing. To make it more confusing for doctors, they can prescribe the same DA meds to Parkinson's patients without causing harm - in Parkinson's, when the movement symptoms get worse, they increase the DA dose and this solves the problem. So it's hard for them to grasp, initially, that for WED patients if they increase the DA dose, this can worsen the problem, to a level it would never have gotten to without the DA.

And that's an important point. If you've augmented, likely your symptoms are worse than they ever would have been without the dopamine med. And when you withdraw, they will get even worse, temporarily. But the worsening is temporary, and once withdrawal is complete, you will enjoy a life that has less symptoms than when you were augmented.

The signs of augmentation are when - compared to before taking the dopamine med - at least two of the following are true: your symptoms begin 2 hours or more earlier in the day, symptoms spread to other body parts (eg. arms), symptoms start sooner after sitting or lying down, symptoms are more intense/severe, or the medication doesn't last as long. It is also called augmentation if symptoms worsen instead of improve after increasing the dose, and improve after decreasing the dose.
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

stjohnh
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Re: Is your DA causing augmentation?

Postby stjohnh » Wed Feb 15, 2017 3:31 pm

badnights wrote:....And some of us use kratom, a herb with opioid-like properties (or maybe contains actual opioids - someone else please clarify).


An opiate is a drug derived from the opium poppy. An opioid is a drug that has similar effects. Kratom is not an opiate but is an opioid (it stimulates the mu-opioid receptors). It is the leaves of a tree that grows in Indonesia, Thailand, Vietnam, etc.

MODERATOR'S NOTE: Opiates are produced naturally in plants (eg. the poppy) and the human body (endorphins). Opioids are a group of chemicals that includes opiates plus chemically synthesized substances with similar properties.
Blessings,
Holland

sandy9356
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Re: Is your DA causing augmentation?

Postby sandy9356 » Wed Feb 15, 2017 10:00 pm

Thank you all for your responses. I am not taking the Sinemet and I am reducing the Mirapex. I am continuing to look for a doctor with knowledge of RLS in the Pittsburgh area. I am not having much success. On a positive note, I have reduced my Mirapex in 1/2 and I am not suffering greatly. I am continuing the Tramadol and I took a Clonopin one night at 3:00 a.m. when all else had failed. I work out on Monday and Wednesday until 8:00 p.m. and I believe that may have been my problem on Monday night. I am hesitant to stop my practice but I am skipping it for the remainder of this week. I will continue to update my progress and appreciate any words of wisdom that anyone has to share.

legsbestill
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Re: Is your DA causing augmentation?

Postby legsbestill » Wed Feb 15, 2017 11:55 pm

It will be great to hear of your progress and best of luck.

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Thu Feb 16, 2017 1:32 am

I can only share my experience. I was in a similar situation and my doctor did what yours wanted to - this was in 2004. It created the WORST level of augmentation I have ever had. For over a day, I had periodic limb movements during wakefulness that would almost make me fall. I didn't sleep. The RLS was in my arms, legs and my whole body was anxious.

He then tried ropinerole. Another horrid experience. Immediately worse.

I fired him at that point. I spent over 6 months trying to find a doctor to help, going to my primary care doc, her partner, two sleep docs, two neurologists. None had a clue. I had finally found this board and the Foundation. I learned about augmentation and that opioids would help. I cut back the pramipexol from .75 to .125, but couldn't get lower. (I have never needed much to work or create augmentation.) The sleep docs and neuros wouldn't presrcibe them. I had some mild opioid leftover and took enough to find that it would reduce symptoms, but I didn't have enough. Finally I found a primary care doc who listened to me, read a paper and an email from Dr Buchfuhrer and agreed.

Not sure how I could have made that happen more quickly. And, not trying to scare you. Just to say that you sometimes have to keep looking and that usually if you do, you'll find someone.

One option, if you cannot find anyone, is to fly to California or to Johns Hopkins. Dr Buchfuhrer regularly takes patients from all over. He will continue to work with you over the phone or through email. I believe it is the same at Johns Hopkins. That said, they have a radically different approach. Dr B used methadone to transition through the withdrawal from the DA and the resulting worsened symptoms. At JH, they believe in a taper off ALL meds and a 5-15 day washout where you take nothing at all. Both seem to work. Not sure if one is ultimately better for you or not.
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.

SLEEPY ANGEL
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Re: Is your DA causing augmentation?

Postby SLEEPY ANGEL » Sun Feb 26, 2017 12:26 am

For badnights---
I didn't notice until tonight (Feb. 25) that you had given me an answer Re. Augmentation (written Feb. 15 at 5:08 am)... THANK YOU! Yes, I have augmentation for sure. I'm only on Ropinirole and Gabapentin, but I'm thinking that right now I'm pretty much "on the fence" as to whether to ask my neurologist to try another solution; she did mention we might try Mirapex eventually. I'm just a wee bit TOO antsy even though I'm spacing doses to TRY to keep things in check.

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Fri Mar 03, 2017 4:33 am

SLEEPY ANGEL - - no problem! as you can see, I am often slow on the uptake myself.

I would bring your neuro a few articles on how to treat augmentation, next time you see her. I have just added one to the list accessible through the link in my signature below - a 2016 editorial from the journal Sleep Medicine that clearly disapproves of using DAs to treat augmented patients. That would be a good one, and the relevant parts are already highlighted. Dr. Buchfuhrer's 2012 paper is also a good one. Maybe you could tell her you're afraid to try Mirapex when you're still augmented from ropinirole, given what you've read.
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

SLEEPY ANGEL
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Re: Is your DA causing augmentation?

Postby SLEEPY ANGEL » Tue Mar 07, 2017 7:17 pm

Badnights---
Thank you for the link, which gets me to a good deal of info. It will take me some time to digest it all, but I will get through it and ponder/decide what to pass on to my Neurologist. Again, thanks!

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Wed Mar 08, 2017 9:46 am

no prob!
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

VeganGal
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Re: Is your DA causing augmentation?

Postby VeganGal » Mon Mar 13, 2017 2:09 am

Has anyone heard of augmentation on Neupro? I thought it was not likely. After augmenting on Levadopa & Requip, I started Neupro 2mg plus 600 mg Gabapentin & 1.25 mg Oxycodone. Within 6 months of going on the Neupro, I had more painful RLS,earlier & earlier & more frequently. My new Neurologist agreed that I was augmenting and recommended a slow wean over 2 months. She and I were both shocked to see that my symptoms continued to get worse for weeks after the wean. Had RLS symptoms for 2-4x/night and had to increase my meds to point of severe sedation. Did not expect withdrawal from DA to last so long. Am starting to level out with on 1200-1400 mg Gabapentin, 0.25 mg Klonopin (for leg kicks & pain) and 5 mg Oxycodone. Having milder symptoms, later in evening & night and only 3-5x/week. Hate the sedation and am worried about tolerance. Hope I don't have to go on DA again!


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