Is your DA causing augmentation?
Posted: 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
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