Is your DA causing augmentation?

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Rustsmith
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Is your DA causing augmentation?

Postby Rustsmith » Fri Sep 12, 2014 5:24 pm

If you have been taking a DA for more than a few weeks, there is a chance that you are starting to augment. But how can you tell? Augmentation is not like a cold where you wake up one morning and a switch has been flipped so that you have it. Augmentation is usually a gradual process that occurs over time.

Research has shown that only a few people experience augmentation in the first six months after starting a DA for the first time. However, as many as ten percent can be augmenting after a year depending on which DA they take and how much they are taking.

The research even shows that some people, who are happy with their current treatment, are augmenting because augmentation can develop so slowly that they did not notice the changes to their RLS and so did not notice that they are now worse than they were before starting treatment with a DA.

Early detection of augmentation is usually desirable because signs develop slowly over weeks or months and once started, will continually get worse. Also, if you have been taking increasing doses of DA to combat
the increasing symptoms resulting from augmentation, getting off of the DA is going to be that much more difficult. The signs of augmentation include:

• Loss of effect of medication as evidenced by a shorter benefit at night and/or relief requires higher doses. Be very suspicious if the higher doses that are required exceed the normally recommended maximum daily dose (0.25mg pramipexole, 1 mg ropinirole and 4 mg for rotigotine).
• Symptoms start earlier in the day than they did before starting a DA. Early symptoms (before evening) are rare before starting a DA. The earlier start can also require two or more doses to maintain symptom control.
• Symptoms have started to involve the arms or other body parts.
• Symptoms develop pain when pain was not present before the DAs.
• You start developing sleepiness during the day. Sleepiness is not being tired from inadequate sleep, which is common with RLS. It is actually wanting to fall or actually falling asleep during the day.
• Increasing loss of control of RLS despite regular DA use as scheduled.

So what do you do if you suspect augmentation? See your doctor and explain your suspicions. Your doctor may not be familiar with augmentation, so you will need to be prepared. Take a copy of the Foundation’s literature("Augmentation in RLS/WED" available to Foundation Members in Member Publications). Be firm that increasing the dose above the recommended values is not appropriate for RLS (Parkinson’s patients take much higher doses than we do and some doctors simply look at the FDA limits for the specific medication, which are set for Parkinsons).

Be aware that there is a questionnaire available that your doctor might be able to use to assess augmentation. The Augmentation Severity Rating Scale (ASRS) questionnaire is similar to the IRLS questionnaire that you probably have been asked to complete many times. The ASRS score will indicate the likelihood that you are experiencing augmentation. One problem with ASRS might be availability since it was intended for use during research studies to track augmentation rates and might not be available for regular physician use. As an alternative, your doctor may be able to compare your IRLS scores over time to see if you are getting worse and therefore potentially augmenting.

When you start taking a DA, write down the following:
1. Time of day that you symptoms usually start
2. How long do the symptoms last
3. Where in your body do the symptoms occur, eg. lower legs, upper legs, torso, arms, head, and only left side, only right side or both
4. How severe do you think the symptoms are on a scale of 0 to 4 where 0 is none and 4 is extreme

The periodically review your answers and compare and record your new situation. If the symptoms have moved, gotten worse or are occurring earlier in the day despite the DAs, take these results to your doctor and use this to start an augmentation discussion. Even if you are only seeing small changes, it is important that your doctor is informed and that the two of you agree on how to proceed.

What if your symptoms included many signs of augmentation prior to treatment with DAs? Unfortunately nothing about RLS is clear cut. If you had many signs of augmentation prior to starting DAs, then you simply have to focus on the questions that are still relevant, like the need to take your medication earlier in the day, sleepiness during the day and any new signs of pain that were not there before. Your doctor may believe that these changes result from a natural progression of your RLS and he/she might be right. So be prepared to discuss the pros and cons of the changes so that the two of you can assess your situation and agree on how to proceed.

So what do you do if your doctor determines that you are augmenting? You need to work with your doctor to develop a plan to get off of your current DA. More information about what to do when you are augmented can be found at:

RLS Foundation Member Publications
http://www.dovepress.com/getfile.php?fileID=16882
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2869.2006.00540_16.x/pdf
http://www.sleep-journal.com/article/S1389-9457%2807%2900139-6/abstract

For members of the RLS Foundation, also check out Dr. Allen’s webinar on augmentation held in August 2014 at:

http://www.rls.org/members-onlywebinar
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.

Polar Bear
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Re: Is your DA causing augmentation?

Postby Polar Bear » Fri Sep 12, 2014 11:36 pm

Rustsmith - a super post.

I fall into the category where I had symptoms 24/7 and also in my arms for many years, long before I started any medication. Treatment began with Ropinerole which did not provide great benefit on its own and this was at the time when 4mg was considered to be a suitable daily dose. Tramadol/codeine was added. This combination does work most of the time.

Because I've been taking the ropinerole for about 7 years it is possible that there is an element of augmentation but who knows, perhaps I am one of those who does not have any augmentation. At present I am coping and this outweighs the thought of going through withdrawal from DAs although I would love to be DA free.

I wish that all those years ago I'd had access to information such as is in your post and have no doubt that it will be of benefit to many sufferers.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Fri Sep 12, 2014 11:47 pm

It was interesting putting all of it together. I am like you with symptoms pretty much 24/7 in my legs, arms and torso prior to starting DAs. When I looked through the ASRS questionnaire, it would have indicated that I had a high probability of being augmented prior to even being diagnosed, much less taking my first pramipexole pill.

One of Dr Allen's points during the webinar was that when they surveyed a bunch of patients on DAs, there was a very high percentage that felt that the treatment was working and that they were doing well. However, there was also a very high percentage whose IRLS scores had increased. The conclusion was that the change had happened so gradually that most of the patients were not even aware of their augmented condition.
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.

sleepdancer2
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Re: Is your DA causing augmentation?

Postby sleepdancer2 » Sat Sep 13, 2014 6:31 am

Thanks for posting that for those who may not be tuned in to the possibility of augmentation. I have WED and PLMD. For years it was thought my disorder was progressing so my meds were increased. Suffered for years with intensely exacerbated symptoms before it was realized I was augmenting. Thanks again.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Tue Oct 28, 2014 3:53 am

Steve, where did you gather the signs of augmentation that you posted? I see some new ones in there that weren't included int the last version of augmentation criteria that I saw (which is somewhat dated now).

Particularly, "Loss of effect of medication as evidenced by a shorter benefit at night and/or relief requires higher doses." is classic tolerance. Since a patient can become tolerant without augmenting, it is not diagnostic.

Some others that were new to me:
Sleepiness can happen with severe WED, not just augmented WED. It is true, though, that most severe WED is or was augmented.

The introduction of pain, or a change in the nature of the symptoms, is sort of an unofficial red flag for augmentation, I think, but not diagnostic.

Loss of control of WED can happen due to either augmentation or natural worsening. The key is how fast it happens. Natural progression of the disease is very slow in early-onset WED, but can be rapid and mistaken for augmentation in late-onset WED. (these types are probably described in the little blue book Lee Buchfuhrer Allen Hening)

Overall, what a useful post! Thank you! The only way doctors (and patients) can tell augmentation from natural progression is by how fast the changes occurred, which can be confusing since there are no hard and fast criteria; but your method of recording severity of symptoms is exceptionally important and everyone on a DA should do it, starting now, because it has the potential to distinguish augmentation from progression. Even better, fill out the IRLSSG rating scale every 6 months.
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

Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Tue Oct 28, 2014 9:26 am

Beth, the signs of augmentation that I included were taken from the Foundation's webinar titled "Augmentation and WED/RLS" given by Dr. Richard Allen in August, 2014. If you have not seen the presentation, it is well worth the time. Foundation members can find the recording in the Member Benefits section under Webinars.

I know that I found the added signs particularly useful because my symptoms before treatment with a DA were severe enough that anytime that I had a bad day, I would have normally been diagnosed as experiencing augmentation. I remember when I first joined this board, I received several comments that I was augmenting when I described my symptoms prior to treatment. It has been Dr Allen's added signs that have allowed me to monitor the effectiveness of my DA treatments.
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.

pblackwell
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Re: Is your DA causing augmentation?

Postby pblackwell » Tue Nov 11, 2014 6:16 am

Having realized two months ago that I was experiencing augmentation taking 12 mg per day of Requip XL I told my Neurologist I suspected my problem was augmentation not progression. He wanted to increase me to 16 mg per day and actually gave me a prescription for it. I refused and demanded a lowering of dose so he gave me 8 mg a day which I have now been on for the last two months. After a week or so of hell, things seemed to level out until lately. Now I am wondering if I am suffering from augmentation again but this time at the 8 mg per day dose. Seems like the symptoms are very much like two months ago. Is it possible to have augmentation stop after lowering the dose to just have it appear again later with the lower dose?

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Tue Nov 11, 2014 8:15 am

This dose is very high for an RLS/WED patient. You likely remain augmented. The only way out of this is to stop the drug completely.

Sounds like your neuro is a bit behind the current recommendations. You may want to write to Dr Buchfuhrer - somno@verizon.net. He will provide a specialist's perspective for 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.

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Wed Nov 12, 2014 12:06 pm

pblackwell, your 12mg former dose is shockingly high. Even your current dose is startling in this day and age.

Your response to reduction, because of that high dose, might not be the same as other people's, but I have never heard of someone lowering the dose and achieving a stable reduction in symptoms. Instead, withdrawal begins as soon as the dose is lowered and continues until all the ropinirole as well as the changes it created in your body are gone, which is anywhere from days to weeks after the last ropinirole is taken. Withdrawal consists of worsened WED - like augmentation, only even worse. Since anything worse than your current WED is unbearable, it is usually prudent to cut all that agony short by quitting the DA cold turkey - but not if you're on such a high dose.

You definitely need a doctor to help you through this, first of all to taper you safely to the highest dose from which you can quit cold turkey.
But not your current doctor. If he was told about augmentation and didn't learn all he could about it before your next appointment, then he doesn't have your best interests in mind, and you should run away hard.

As soon as you can safely quit the R completely, do so, because the worsened WED that follows is only temporary. You might have to keep reminding yourself of that, and take a few days off work to allow for it to happen (most people are not capable of working when it happens). But it is only for a few days - typically (not sure about you, but for lots of people coming off smaller doses) the first 3 days are worst, after which they begin to see that there's a light at the end of the tunnel.

You will want a doctor who knows how to treat a WED patient withdrawing from a DA. This is not AT ALL the same as a Parkinson's patient w/drawing from a DA. And you will need a doctor who knows how to treat someone with refractory WED, in case you're as refractory after this experience as I expect you'll be. You should probably never go on a DA again, but there's a thin chance it would be OK. A better chance but still thin that a very low dose of DA in combination with an anti-convulsant would work. Better of an anti-convulsant and an opioid, or just an opioid.

You should get your ferritin levels checked along with other iron markers. You may have been saved from earlier severe augmentation by high ferritin, but best to check. Your levels should be over 100 ng/ml; if they're not, taking oral iron could actually lessen the symptoms. And if your hemoglobin iron is low (if you have iron-deficiency anemia) that could be the cause of your WED right there.

You might also want to be checked for intestinal disorders (all of us should) because WED is up to 30-40% more likely in people with bowel issues. (celiac, Crohn's, colitis, inflamed, irritable, etc).
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

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Thu Nov 13, 2014 6:49 am

badnights wrote:
Your response to reduction, because of that high dose, might not be the same as other people's, but I have never heard of someone lowering the dose and achieving a stable reduction in symptoms.


Not sure if you'd call it a stable reduction, but reducing it until I could find someone to help me stop it did help me quite a bit. I was up to .75 mg (I started with .0625) and it was terrible. I reduced it to .25, where I had been when the worst of the augmentation started and the doctor started increasing it regularly. I was still augmented, but the over the top symptoms were reduced. I knew that the only way to remove all the symptoms was to stop it completely, but reducing it allowed me to get through a few months while I was finding a doctor to help.
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.

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Sun Nov 16, 2014 6:44 pm

Ah, thanks! I stand corrected.
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

richviv
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Re: Is your DA causing augmentation?

Postby richviv » Sun Apr 19, 2015 10:34 am

OK. I accept I have augmentation. I have been taking 6 mg of ropinirole for several years. I have symptoms starting early in the day, but they are relieved by movement and/ or an early dose of ropinirole (I have 6 1mg tabs to take as needed). I also almost never have symptoms at night. My legs often hurt/ache all day long . I am unsure if this is augmentation, Worsening RLS. or tired legs- I usually spend 10 or more hours on my feet,often barely sitting or laying from 5 AM till 5 PM. ( I am retired so I do what I want that is not costly -cook,clean, build, clear brush,garden, walk, -being active/busy is extremely important to my happiness and health.)I tried to quit ropinirole cold turkey, but my legs violently kicked -unless walking-for 20 hours before I caved in and took my pills.
I am not sure what would be on the 'other side' of being off ropinirole. I would still have RLS and need some pill. What pill is that? Will it have augmentation or other issues? My DR. would never give me an opiate nor do I think I would take one-I have had addiction issues and am wary of my abilities to handle potentially addicted things.
Trying to improve my life / control of RLS/augmentaton I have started today the neupro patch of 1 mg and intend to try to reduce my ropinirole by 1 mg every day or two. I have and opened ended script for the neupro -up to 3 1 mg patches a day.So i am going to gradually reduce the ropinirole to 0 mg while increasing the neupro as little as possible while suffering as little as possible., ( I am a poor sufferer -ask my patient wife) Will this work? I doubt it.But, will I be alive and mostly happy, have the prettiest 70 year old wife,cutest dog. and continue to bring more misery onto myself by needless worry? yes
Always listen to good music -as loud as your ears can tolerate and your brain manage( with headphones-when my wife is not at working) /

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Sun Apr 19, 2015 7:08 pm

It could work. You were taking a much higher dose of ropinerole than is currently suggested - I have no idea how hard it will be to manage.

An opioid makes it much easier. Some of us have tried multiple times without an opioid and not made it. Some of us have. You are determined, it sounds like, to try it - that will be helpful.

Will you have WED/RLS after? Yep. Will it be as bad? Hopefully not. Will it also have the risk of augmentation? It depends - any dopaminergic drug will, though the risk is vastly decreased with rotigotine (Neupro in the US).

I wouldn't decrease your ropinerole quite so quickly. Maybe take 3-5 days between reductions. You are at a high enough dose that there could be repercussions from reducing that fast.

One of our other members - Orrel - has recently used this same method - you may want to look for Orrel's posts. Here is a link to see all the posts Orrel has written: search.php?author_id=19283&sr=posts
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.

Orrel
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Re: Is your DA causing augmentation?

Postby Orrel » Sun Apr 19, 2015 9:04 pm

Richviv: As Views mentioned I did use your method (2 mg patch to get off .5 mg. pramipexole which I slowly
reduced over a period of weeks). It was not a smooth transition and I continue to have lots of night WED. In
fact I'm not really any better than what I was on the pramipexole even after I added 150 to 225 mg. of
Lyrica. Maybe I have augmented on the Neupro patch. I took my last pramipexole pill (.0625 mg strength)
on March 25. Perhaps things will get better for me with time. I have contacted Johns Hopkins about an
appointment with Dr. Earley, a world expert on WED and am waiting to hear back. Some have been successful
transitioning from a short-acting DA to Neupro. Keep us informed. Best of luck

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Mon Apr 20, 2015 5:18 am

I know some experts believe that you can transition to rotigotine from pramipexole or ropinerole when augmented. And, we know that at least one of our members did it. I have to wonder if there is something more specific we need to know about why some succeed. For example, must you have augmented recently? Or only had to increase your dose one time? Or what?

My gut tells me that anyone who has augmented for a long-ish time (not sure, but would say at least 4-6 months), anyone who's increased more than once, and anyone taking 50 to 100% more than the current recommended (and much lower) doses, would have a tough time with this. That's simply because those same people would never have been able to switch to any DA. In that way, I'm not sure rotigotine is different.

I don't know if my guess is right or not...and that is part of the problem. We just know so darn little about this.
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.


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