Augmentation Evaluation

[Rustsmith]

How do you determine whether the problems that you are having with RLS are augmentation or a normal progression of the disease?

The link below will take you to a discussion that you can have with your doctor on whether or not you are experiencing augmentation.

viewtopic.php?f=4&t=9005

[Rustsmith]

The reason that I become interested in the evaluation of augmentation was based upon my own experience with this issue.

When I first joined the discussion board, I had just been diagnosed and had begun treatment with pramipexole. I was still in the "happy" period when pramipexole had completely erased the issues that I had been having with severe WED for about six years. It seemed like a miracle "cure". But in my welcome to the board summary, the moderators suggested that I might be augmenting based upon my description of symptoms before I had taken even my first DA. Unfortunately, after only a few weeks on pramipexole, I had to move from 0.25mg to 0.375 mg to maintain control. After nine months I needed to move up to 0.5 mg and knew that this meant trouble. My doctor (at that time) decided to switch me from pramipexole to a 2mg Neupro patch and gabapentin, which are still working reasonably well.

As I investigated augmentation a but further, I found that my base symptoms before treatment with an AD were going to make diagnosis of augmentation very difficult. The international questionnaire for evaluating augmentation has six questions, which can be summarized as:

1. Loss of effect of medication, evidenced by shorter benefit at night and needing higher doses
2. Symptoms start earlier in the day
3. Symptoms begin to involve other body parts
4. Symptoms develop pain when pain was not present before
5. You start developing sleepiness during the day that is separate from inadequate sleep
6. Increasing loss of control of WED despite use of DA as scheduled.

Since my pre-DA symptoms already involved most of my body and were active 24/7, that meant that I could not use questions 2 and 3 and that question 1 would be more difficult to answer (other than needing higher dose). That only left three or four questions, which invalidating the scoring process for the questionnaire.

So, my take on all this is that diagnosis of augmentation is even less straight forward than the diagnosis of WED, which we all know can be difficult. A diagnosis of augmentation will quite probably involve a give-and-take discussion between you and your physician.

For my part, I know that eventually I am going to start showing signs of augmentation on Neupro. However, as Dr Allen stated in his webinar on augmentation (available to WED Foundation members at http://www.rls.org/members-only%20webinar), augmentation is something that can develop gradually over time. I have therefore started keeping a WED journal to track both my sleep and my use of medication. I review this and will begin looking for trends before I visit with my doctor so that I will have facts to share with him when the time comes rather than a vague description of my condition that simply leaves too much room from error (his to underestimate my condition and mine to overestimated any seeming increases in my symptoms).

[ViewsAskew]

Great idea to keep a journal. It's really hard to notice when it's gradual and mild, especially at first. But, that is when it's the most easy to treat!

[Rustsmith]

The journal has already paid dividends for me. I went through the data and found that my breakthroughs were occurring on a regular 14 day basis. Turned out that those were the days when my Neupro patch was applied to the front of my right shoulder. I am severely right handed and remembered that the patch was usually starting to come off the next morning. I have been able to fix that my moving the application site just a bit so that the patch isn't having to undergo the 3D twisting that it saw on the "normal" application site.

[Polar Bear]

Goes to show how important it is that the patch has absolute full contact to the skin for efficient medication.

[crazy joe]

Hey Guys---very imformative... I was on requipp for 3 years upto 2mg... I seem to be always tired.. Wear cpap and neck and shoulder pains however I got off the requipp to try gabapentin and that was a terrible trip... The doc has me back on requipp titrating back upto 1mg... Should I try the patch again? Some of those sysmptoms did sound like mine... The doc wants me to try loratab/requipp combo or even maybe methadone... My head feels like it wants to explode since i probably came off the gabapentin too quickly too supervised by the doctor....I'm concerned.... legs were kicking last night around 3am--- couldnt go back to sleep...

[ViewsAskew]

Hey Guys---very imformative... I was on requipp for 3 years upto 2mg... I seem to be always tired.. Wear cpap and neck and shoulder pains however I got off the requipp to try gabapentin and that was a terrible trip... The doc has me back on requipp titrating back upto 1mg... Should I try the patch again? Some of those sysmptoms did sound like mine... The doc wants me to try loratab/requipp combo or even maybe methadone... My head feels like it wants to explode since i probably came off the gabapentin too quickly too supervised by the doctor....I'm concerned.... legs were kicking last night around 3am--- couldnt go back to sleep...

Depends on your answers to these questions:

1. What was your initial dose of ropinerole?
2. How much was your final dose or ropinerole?
3. Were your symptoms much worse or did they start earlier when taking ropinerole?
4. Did you ever try a different dopamine agonist - rotigotine, pramipexole?

[Haven]

My physician could not say for sure if what I was experiencing was augmentation. I have not been able to link especially bad attacks to any particular factor (coffee, alcohol, presence or absence of exercise, etc.). But I seem to be getting attacks more frequently and they are now requiring two doses of clonazepam (0.5 mg) to bring them under control. I've tried other medications and not found them to be any more effective than clonazepam, and I've been taking it at this level for 25 years without having to increase it - until now. Also, now the symptoms start in my chest and only travel to my legs when they become severe. A sense of vibration in my chest happens pretty much every time I sleep, even for a nap. I recently read about Van Leuwenhoek's disease and am wondering if there is any connection between that and WED? My chest symptoms sound identical to those of Van Leuwenhoek's.

[Rustsmith]

Augmentation is believed to only occur with the use of the dopamine agonist drugs (pramipexole, ropinrole and rotigatine) and possibly Tramadol. The fact that you have been successfully using clonazepam for so long might be an indication that rather than augmentation, you might want to consider that maybe what you are experiencing is a natural progression of the disease.

[Dr.Placebo]

I am new to the group and have been reading about augmentation trying to figure out if that is what happened to me 3 years ago. My symptoms are similar or maybe identical to those of Haven. I realize his post was 9 years ago but I am responding anyway. i, too developed symptoms originating in the center of my chest, like a jolt of electricity shooting outward causing my chest, arms and sometimes diaphragm to spasm. when it was really bad the involuntary movement was so forceful it made me grunt. Has anyone had symptoms like this? Onset was after I was prescribed ropinerole and it resolved when I stopped it, but then recurred later. When I have involuntary movements like this (I now call them "twitching", my RLS (which i experience only in my hands) is quiescent. Has anyone had anything like this?

[badnights]

I'm late answering you - - but no. I have not experienced such a thing nor do I recall hearing anyone describe such a thing on the board - - but I haven't been as involved here in the last few years as I used to be, so I may have missed something similar.

Did you ever feel WED/RLS in your legs or feet? Or has it always been only the hands (and chest)?

[RestlessNan]

I told much of my story about 1yr ago on this board. To recap, I started on ropinirole over 20 yrs, ago after trying several different approaches. It truly was a godsend. I also was told to use Percocet 1mg if needed. I don't recall the sequence of events but gradually the dosage needed to be increased due to increased RLS symptoms. This was fine with as there were minimal side effects (some compulsivity), I was woefully blissful, just keep it coming. The last increase was in about 2018, my NP prescribed ropinirole 4mg 3 times/day. 12mg/day. I didn't question the amount because it worked and what more could I ask for. During these 20 years as the dosage went up, no other provider said, "Why are you on such a high dose of ropinirole?" or "Didn't you know that ropinirole causes augmentation of RLS." I probably saw 15 different providers for various maladies unrelated to RLS, they had that list of my medications in front of them. When and how did the finding of augmentation come out? Probably not as headlines in the daily news, more likely in a medical journal. I just don't see how this played out and how it's still so unknown to so many providers. Was it a subject of litigation?
So, I digress. The tapering off of ropinirole was a daily hell! I started in early August 2023 with a neurologist who worked with sleep disorders and RLS. I believe he is a wise person but a bit out of step with the times. He wanted me to decrease and eliminate the ropinirole over a period of 10 weeks with the help of methadone, 10 mg twice per day. The methadone was not a good drug for me, It turned my life upside down. I couldn't sleep at night, any sleep I caught was in the recliner with a heavy fleece blanket in the middle of the summer. My role as a housewife went down the tubes, I seldom engaged. Our lives weren't exactly revolving, it just went on in short segments, I isolated myself due to my change in appearance. My husband deserves an award. Sleeping, eating, self care, care of our home, cooking,washing clothing, everything was in different than normal ways.
The ropinirole taper progressed until I had 3mg left, down from 12mg. I just couldn't go for more, it was so painful and mentally all I could see is more of the same. He wouldn't change the medication from methadone to another opioid. During this period I found that he had no one to field pertinent questions sent through "My Chart". He would answer himself or tell someone else what to write. I'd wait for days for a reply. When I started experiencing akithesia (sp), It was during the night and I didn't have a clue what to do with myself. I suspected it was a side effect of withdrawal. I called his clinic and received and after hours number. Actually he was covering for the clinic and called me back himself. There was no advice for this. I lost a great deal of respect for him here and well as with the somewhat rapid tapering off of ropinirole. Jumping ahead, in January of 2024, I finally got off the last of the ropinirole. He immediately want me to taper off the methadone. Even if it wasn't a good medication for me, it was something. I very pointedly said to him, "I may be off the ropinirole, but my restless legs haven't been cured. I will need something for life" I should add that I was on gabapentin during some of this taper but it turned me into a blubbering idiot who had trouble walking.
During times of cognition, I read whatever I could find about RLS. I listened to several webinars on YouTube by trusted speakers, like Dr. Berkosky. There aren't many options for RLS treatment. The relationship with the neurologist I was seeing has dwindled down to just a little. He did arrange iron infusions for me. I wanted to switch the methadone for a different analgesic. I finally had a conversation with a NP with extra qualifications, She is the main person in hospital based pain clinic. She would help me get off of the methadone and on to Percocet. This has been another painful, tedious taper with insomnia, weird feelings under my skin and into my bones. On top of this I've had some major health happenings. But they don't want to veer from the plan with extra medication. I don't understand this part. How will they know when the time is right? How can they tell if Percocet is going to be the correct analgesia? How do they know if my opioid receptors are working.
I apologise for the length of this. I hope there will be an end to it before I die. I've missed a year of my life! I've aged 10 yrs in one year. Not what I had planned for my golden years. But, I am interested in others who have tapered off of one analgesia and onto another. It claws at me
why providers missed the message about ropinirole and augmentation. Looking for feedback.

[Rustsmith]

Nan, I transitioned back and forth between Tramadol ER and methadone for several years. Tramadol is both an opioid and an anti--depressant and I didn't like the loss of all emotions due to the anti-depressant properties. It was also causing a total loss of libido, which was even more distressing. As for methadone, it can depress testosterone production in men and that was causing severe depression, as is severe suicidal ideation. I would take one med for six months before the side effects became too much and then switch. The opioid dose for them was about the same (google morphine equivalent calculator for compare opioids) so I was able to just switch from methadone to tramadol without a taper. When I went from tramadol to methadone, it required a taper due to the anti-depressant properties and not the opioid.

In your case, if the morphine equivalents of the oxycodone in the Percocet is about the same as the methadone, it shouldn't be necessary to taper between them.

As for methadone, it has been the preferred RLS opioid due to the fact that it also treats the dopamine system where the morphine opioids, like oxy, do not do this. However, buprenorphine (Suboxone) is starting to become popular with the RLS experts and I understand that it interacts with the dopamine receptors too. Suboxone also has the benefit of being a Sch 3 drug (as opposed to Sch 2 for methadone and oxy), so you can get refills and are not limited to 30 days of meds. As for Tramadol, it is Sch 4 because it is almost impossible to overdose on it but the ER form that I took is expensive.

[RestlessNan]

Rustsmith, Do you know how the information about augmentation was first made public? Was it something people would read and just think, "No big deal!" I'm lost here. Even the pharmacies I've dealt with haven't gotten a question mark about when sending it through insurance, they frequently do with other issues that's for sure. Things could have been so different if say 15 years ago someone would have said, "I've read in medical journals that the dopamine agonists are raising heck with RLS." I'm not a litigious person, but I would think lawsuits would have come out of the woodwork. Whatever. The campaign needs to continue to stop the use of DA's for RLS, have more education available, update information about DA's, most reference books are sadly outdated, I could go on... Thank you.

[Rustsmith]

Sorry, but I am not familiar with how the concept of augmentation was originally discussed. I am certain that it was in medical journals, but since this is a condition that was specific to the use of two drugs (now three) and only RLS, it didn't get much "air play". Even after it was originally discussed, it took several years to discover that it was not an occasional, rare occurrence.

As for education, the RLS doctors and researchers are doing what they can with publications in medical and scientific journals. Unfortunately, this is an uphill battle because the pharmaceutical supply reps are still pushing these RLS "miracle" drugs on uneducated GPs. Further, there is still zero coverage of RLS or even other sleep disorders in medical school even though just RLS hits 10% of the American and European population, not to mention sleep apnea, narcolepsy, etc. If you search "RLS Augmentation" using Google Scholar (not Google), you will get a huge number of hits. The info is there but most GPs are too busy to go find it until it is too late and a patient ends up educating them about it.