Is your DA causing augmentation?

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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.
Rustsmith
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Re: Is your DA causing augmentation?

Post by Rustsmith »

I represent at least one of the members who successfully switched to rotigatine after augmenting on pramipexole.

I agree that the parameters described by Views probably played a role in my success while others have had a much harder time making the switch.

I had only reached 0.5mg of pramipexole for a couple of months (after a total of 9 months on pramipexole) before I made the switch. The switch was necessitated by the increasing occurrence of WED symptoms in the early afternoon each day (when the previous night's dose as almost gone).

In my case, I made the transition by starting with a 1mg patch and reduced my pramipexole to 0.25 for 2 or 3 days. I then went to the 2mg patch and no pramipexole. During the transition I had better control of my WED throughout the day than I did with 0.5mg of pramipexole. I am now on the 3mg patch and only have a limited number of days with breakthrough symptoms.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

pab628
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Joined: Mon Jun 11, 2012 3:43 pm

Re: Is your DA causing augmentation?

Post by pab628 »

On April 29th, I started reducing my Ropinerole by 1/2 mg. (was on 3 1/2 mg). The first few days, I could not tell much difference. Well since then I am suffering 24/7. Sleep is minimal. I also take 1/2 mg Clonazepam at night. I am flying to Europe in one week and don't want to reduce my Ropinerole any more until I return. I talked with my Neurologist at the first of April about reducing amount and he said maybe I should by 1/2. I talked with his assistant yesterday and she said Dr. said go ahead and take to that other 1/2 mg again (total) 3 1/2 mg. Of course, since I've been on this "detox" journey for a couple of weeks, I'm concerned I'll loose ground (the 3 1/2 wasn't totally controlling RLS, but was better than the last 2 weeks). She will further consult with him today and call me. Now I'm stressing about my much anticipated trip. Wishing I had waited until I returned.

Rustsmith
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Re: Is your DA causing augmentation?

Post by Rustsmith »

Do you have a seat selection yet for your flights? I have been a regular overseas traveler for many years. I survive by ALWAYS getting an aisle seat. That allows me to get up and walk around if my legs start to bother me while the seatbelt light is off. When it is on, the aisle provides room to extend my legs and do a static stretch.

Almost all airlines allow you to select your seat in advance. You go to their website, type in the information about your reservation and then select any open seat. If the aisles are all gone (aisle seats tend to go first), then keep checking back every day or two just in case there is a cancellation. Also check three days before your flight. That is when the start upgrading the top frequent fliers to business class. These individuals will generally be vacating aisle seats.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

Polar Bear
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Re: Is your DA causing augmentation?

Post by Polar Bear »

As stated by Rustsmith I always book an aisle seat, but more than that.... I try and book the very back aisle seat.
This is considered a poor seat because the seat does not go back and it is right beside the toilets.
However, being at the very back near the toilets means that the refreshments trolley and any other ongoing business is never between you and the toilets.
On occasion I have been able to just stand up in the aisle beside my seat and not really be in anyone's way.
And it is at the toilets that you might be able to stand and do stretches or walk in very small circles if necessary.

Also, if you are a member of the Foundation you will have been provided with a card which states you have a movement disorder and all consideration should be given to you. I took it with me when I booked long haul with my travel agent. Travel Agent ensured that I had my prebooked aisle seat back row, and also discounted the booking fee, and matched the cheapest on line price of the flight that I had found.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Is your DA causing augmentation?

Post by ViewsAskew »

Do you have anything to help you - besides clonazepam - in your quest to reduce the amount you are taking? Without anything, my personal (and I am NOT a doctor!) feeling is that you should just continue with your 3.5 mg dose until you can find something to help.

Dr Buchfuhrer states - on www.rlshelp.org in the patient letters - over and over that it's almost impossible to stop a DA if there is any augmentation without an opioid. And, those can be very hard for us to get. But, without them, it's truly, truly, truly miserable. He even goes so far as to state he thinks it ends up taking longer without any help. That we prolong the torture, for possible months.

Definitely get an aisle seat. And, let them know if you can. But, that trip is likely going to be very, very hard without adequate drugs to cover you.
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.

atule1969
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Re: Is your DA causing augmentation?

Post by atule1969 »

Thank you for the information on Augmentation. I DO think I am experiencing this. I went to the VA doctor yesterday and told him about the RLS foundation, etc. He UPPED my intake of requip and last night I walked and suffered until 4am before dozing off. I am so PO'd that I feel nothing is working.

I did get the book today "clinical Management of RLS" and also read the Nightwalker about the Quality care centers. I may take a trip to Houston to check it out.. As I am typing this at 3 PM I am having severe RLS fidgets, etc.

Joe

ViewsAskew
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Re: Is your DA causing augmentation?

Post by ViewsAskew »

How many times has the dose been increased, Joe? And, how much are you now taking?
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.

Aipulu
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Location: Maui, Hawaii

Re: Is your DA causing augmentation?

Post by Aipulu »

I spent 2 months trying to get off Mirapex at 1.0 mg level due to augmentation and impulse control issues. Couldn't get off DAs completely. I used 0.5 mg of ropinirole first and then went to the 1 mg Neuro patch. I like the patch. Using a 600 mg Horizant pill and 0.5 mg Ultram with it alleviates my evening symptoms pretty well. But I now get extremely sleepy at some point in the afternoon. The sleepiness is followed by the fidgety rls symptoms so I can't lie down like I so want to. I have had problems in movies with rls symptoms for years. But this new symptom hits me wherever I am, not just in a dark, cold room. Could it be augmentation from the Neuro patch? I thought the Neuro patch was good about not precipitating augmentation. Could this be a side effect of Horizant and/or Ultram? I am baffled.

Rustsmith
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Re: Is your DA causing augmentation?

Post by Rustsmith »

Aipulu, take a look at the information at the top of page one of this discussion and honestly answer the questions to get an idea whether you think that you are augmenting on the Neupro.

As for the Neupro, 1mg is a low dose for this medication. The normal dosage for RLS/WED tends to be either 2 or 3mg. So augmentation is even less likely. As for your statement about Neupro "not precipitating augmentation", the medication is still somewhat new so they cannot be sure yet. Because it is a time release medication, the risk of augmentation should be lower but that does not mean that I cannot happen. I know because I had to move up to 4mg a couple of months ago and have once again started to have problems.

As for the sleepiness, I would not be surprised if it was associated with any of the medications that you are currently taking. A question for you is how well and how much are you sleeping at night? I have sleep issues that I believe are associated with the Neupro. I get a deep sleep because I am also taking gabapentin, but wake up after 3 to 4 hrs and cannot go back to sleep. This started about the time I switched to Neupro, so it is my primary suspect even though this is not listed as a side effect. But I will not know whether Neupro was the cause until I can get off of it.

And finally for the record, I tried Horizant and it did not provide me with any additional benefit of simple, CHEAP gabapentin. But this is an issue that varies from person to person, so my ability to get similar results with the older, less expensive drug will probably not extend to others.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

ViewsAskew
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Re: Is your DA causing augmentation?

Post by ViewsAskew »

Tramadol is actually the only other non DA drug that can cause augmentation. I don't know much about it, other than it can happen.

I also don't know what happens once you've augmented. Does that mean you can switch to rotigotine and not augment? As Steve noted, I think that will take time to tell. Almost everyone seems to augment more easily once it's happened. The time release feature may prevent it...but only time will tell.

You know what augmentation feels like - if this feels like it, the tramadol seems the most likely culprit. But, breakthrough is indeed a possibility since your rotigotine dose is relatively low.
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.

Ronofold
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Re: Is your DA causing augmentation?

Post by Ronofold »

4mg was the max for ropinirole but now it is 1mg.
It is an awful drug at 4mg.
It took me 3 years to get off it and only after a six month government fight.
In one day it was gone. Difficult to believe eh? TRue though.
Years of standing behind a chair in meetings gone.
I can fly without pacing up and down the aisleway.
It's so good to live without rls.

Polar Bear
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Re: Is your DA causing augmentation?

Post by Polar Bear »

In August you were on the 3mg rotigatine and having occasional breakthrough symptoms.

"""In one day it was gone""
At what point did this happen...

I think on another thread you mentioned that you are taking methadone.
Just to clarify - Do you mean that your RLS symptoms are now under control with the use of methadone.

I am very happy that you are finding relief. :)
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

lynncomb
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Joined: Tue Mar 29, 2011 5:55 am

Re: Is your DA causing augmentation?

Post by lynncomb »

I need to learn about augmentation for someone who has only take one Sinement, and one Mirapex. And I had symptoms all the time before that. It might be natural progression since I have had RLS/WED/PLMS for 58 years. Would someone point me to the places I need to go for more information. I have already read most of the information, but it all starts with DA treatment, which with only one dose of 2 medications, I don' t think that applies. Maybe, I need info on natural progression of all this. I'm still wandering around the site, trying to learn how to find things.
Thanks,
Peace and hope to you all.

Rustsmith
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Re: Is your DA causing augmentation?

Post by Rustsmith »

Lynn, take a look at the links that are in the signatures for both myself and badnights to get more information on augmentation. The topic on "IRLSSG Augmentation paper" in the Augmentation forum also has the latest thinking about augmentation from the international experts and was published just last August.
Like you, I had all of the symptoms of augmentation before I ever took my first dose of Mirapex. I remember that the greeting that Polar Bear wrote when I joined this discussion board suggested that I had augmentation. The only problem was that I had just started and the Mirapex was still working well (but not for long).
So, for those of us who had already progressed to severe RLS before diagnosis or starting treatments with any type of dopamine, diagnosis of augmentation pretty much becomes a case of remembering what it was like before and comparing it to now. That means that it is a diagnosis that you have to make because your doctor will not be able to make that comparison for you. However, this does have a glimmer of a bright side. A doctor who really understands augmentation will believe you and help you out of it. And, a doctor who does not believe your self diagnosis on this will probably not understand augmentation well enough to know how to adjust your treatment. In that case, time to find a new doctor.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

sandy9356
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Joined: Wed Feb 08, 2017 12:49 am

Re: Is your DA causing augmentation?

Post by sandy9356 »

I am new to the forum but certainly not new to RLS and the challenges it has caused in my life. I am 65 years old and have had RLS since I was a teenager. My mother also suffered from RLS; however, it was not a recognized disorder and she never received any type of appropriate treatment. She became highly addicted to narcotics. I was treated by my PCP for the RLS until about a year ago when she felt that my symptoms needed more specialized care. I have been seeing a neurologist, but I am never symptom free. I have been on every medication on the market. I am currently maxed out on Mirapex and having severe symptoms from early afternoon through the evening. I average about 4 to 5 hours of sleep per night. We discussed revisiting some of the drugs which I had used previously with the knowledge that after a period of time I will experience the augmentation and will need to switch drugs again. After reading the reviews in this forum, I am ordering the Relaxis Pad. From my history, I believe that I start experiencing augmentation within 6 months of the start of any medication. I currently do not attend any evening activities that requires me to sit in one place for a long time (over an hour).

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