Is your DA causing augmentation?

[fuz_mind]

thanks so much for all the opinions! looks like i have to go back to my neuro again for another fight

my ropinirole has been increased at the rate of almost once every 2-3 months, which has been very troubling to me. but my neurologist is more concerned about my use of tramadol and clonzapam

the only reason why I have stuck to my neuro although he's clueless (and he admits so) is because he was the only one who didn't dismiss my concerns and is open to suggestions. he eventually gave me an iv iron infusion as well because i wasn't responding to oral iron. i saw 5 other neurologists who dismissed the pain as psychosomatic

been a painful journey in all sense

[badnights]

In my signature line is a link to a post that contains links to information on augmentation and iron. The full paper by Buchfuhrer that Polar Bear quoted from is there (same link as Ann gave you). Buchfuhrer has a lot of clinical experience and was one of the authors of the original Mayo Clinic algorithm for treating RLS/WED.

Your doc might like the New paper, first one on the list, as support for and expansion on the Buchfuhrer one.

There is also an extract from the book that Polar Bear quoted, and instructions for accessing the Foundation's publications, including the Medical Bulletin for healthcare providers, which would be a good one to give them. And other good resources.

[Caldwell]

The month of December 2016, brought great relief to me of my RLS, with 1 Ropinerole & 1 Gabapentin taken at 7pm every night. Now, 5 months later, I am right back in the throes of nightly RL,with no relief from the above doses of meds. Is this augmentation? Should I do a trial of increasing the dosage of one or both meds? Please advise! Caldwell.

[badnights]

Caldwell, it very likely is augmentation. Tolerance to the medication would probably not build up so quickly. Are your symptoms starting earlier in the day than before you started ropinirole? Are they more intense, have they spread to your arms? If some or all of these things are true, you could be experiencing augmentation.

When you say 1 pill, is that a 1 mg pill of ropinirole? How big (how many milligrams) is your gabapentin pill?

I would not advise you to increase the ropinirole, since 1 mg is the maximum recommended daily dose for WED/RLS patients (recommended by specialists, although the manufacturer and other sources will say that up to 4 mg is fine). You might try to split the ropinirole (you might need a drugstore pill splitter) and take half of it a bit earlier, to address symptoms that start earlier in the day. Or take half later, to provide better coverage through the night.

You could probably increase the gabapentin - according to the book "Clinical Management of Restless Legs Syndrome", WED/RLS patients can take up to 900 mg up to 3 times a day (for a maximum daily dose of 1800 mg).

The best thing for you to do, and I can't stress the importance of this enough, is to find a doctor who has experience treating augmented WED/RLS. Second best, is to take some literature on augmentation and its treatment to your regular doctor. Make an appointment strictly to discuss augmentation, nothing else. Show him the literature and tell him you think you're augmenting, then ask him if he could please tell you what he thinks of it all.

And ask for a serum ferritin test. We tend to have low levels of ferritin, and this is linked to greater severity of symptoms, and to greater likelihood of augmentation. So get that test, and ask for the actual concentration - the number, like 30 ng/ml - not just a statement that it's normal, because normal for regular folks can be as low as 20, but normal for WED/RLS patients should be at least 100.

In my signature there is a link to some resources on augmentation. I recommend that you download and read the following, and decide for yourself if you think you might be experiencing augmentation. Print the ones you find most relevant and take them to your appointment. :
The "Need for New Treatments" paper
Buchfuhrer's 2012 paper
the Study Group's white paper on augmentation
Extract from Clinical Management
You will also see instructions for how to access the RLS Foundation's publications, which include a number of brochures on augmentation. All of these are useful.

[reliefis#1]

Is it possible to be augmenting after two weeks on repinirole .25 mg? I've had insomnia for the last two days. The sensation of moving my legs is starting earlier in the evening. Has become uncomfortable to sit and watch TV. I suffer from heart palpitations and those have been happening more often and stronger. I also have a strong feeling of anxiety with hot flashes. Now I feel the RLS in my arms. I was on gabapentin 300 mg but stopped because of the dizziness and constipation. But with these terrible feelings and fear of early onset of the urge to move my legs and now my arms. I want to get off the repinirole before I have to increase my doze. I have an appointment with a movement doctor in 30 days. Don't know if I should stay on repinirole until the appointment. I am worried, especially about my extra heart palpitations. Thank you.

[Rustsmith]

The simple answer to you question of whether you can experience augmentation after 2 weeks is - yes you can. There are a number of other things that you have to consider before you can really determine whether this is what is happening to you. If your ferritin levels are not over 100, this can speed the path to augmentation. I haven't gone back to review all of your recent history, but I seem to remember that you have been making a number of other changes, so is it augmentation or is it something else? So is it possible to contact your current doctor for advice before you see the movement disorder doctor, especially since you have the heart issue?

[ViewsAskew]

I did it in less than two weeks on pramipexole. Definitely see your doc very soon! Sounds like a lot is going on and you must be miserable.

[badnights]

@ reliefis#1 - Who prescribed the ropinirole? Can you try to see that person sooner than the 30 days?

[TiredGrammy]

Oh wow! I sure wish I'd seen this a few years ago...before my neurologist had me on 3 mg Pramipexole. Along with Gabapentin. Before another doc had me on 6 mg Neupro, .75 Pramipexole, Sinemet, Clonazepam, Norco, all at the same time. Went to Johns Hopkins, He took me off Sinemet and Clonazepam immediately and had me wean off Pramipexole, which went ok, and now trying to wean off Neupro patch, which isn't going well. Thoughts?
Thanks

[stjohnh]

Hi Tiredgrammy. Yes it's almost guaranteed that at those doses you have augmented. See my comments on your other post for further discussion.

[rjdishon]

I am confident that I am augmenting. I have been on 4 mg of Knolopin (which I tried to stop myself and within 3 days began having terrible withdrawals) and 4 mg of Requip per night for a year. Although I am able to sleep through the night, I have noticed that I am having to take the medication earlier and earlier in the evening. However, by 10:00-11:00 am I am already starting to feel the sensations in my legs and arms and am forced to stand at my desk, walk the halls, etc. until I can get them calmed down. I think the most bothersome part to me is that I cannot sit through a meal at a restaurant, I cannot sit through a movie in a theater, and more than 30 minutes driving and I am looking for somewhere to stop and get out of the car. I know that these things are frustrating to my wife and kids, so I feel stuck.

[stjohnh]

There is a good chance you are augmenting. The only way to solve that is to stop the Requip. The Klonopin is also problematic, although your first priority is to get off the Requip. Unfortunately stopping the Requip is very difficult, and if you decide to do that you are looking at several days of pure torture. Much worse than you're currently experiencing. After you get off the Requip you have several options.

One is to try a medication like gabapentin, Horizont, or Lyrica. They are all similar. Gabapentin is by far the least expensive.

Another option is to try a long-acting dopamine agonist, Neupro patches are the usual ones used.

A third option is to retry the Requip although at a much lower dose than you're currently on. If you do this you need to be off for the Requip entirely for at least a week to help reset your dopamine receptors.

Another option is to switch to an opioid.

All of these options have various advantages and disadvantages.

[ViewsAskew]

I am confident that I am augmenting. I have been on 4 mg of Knolopin (which I tried to stop myself and within 3 days began having terrible withdrawals) and 4 mg of Requip per night for a year. Although I am able to sleep through the night, I have noticed that I am having to take the medication earlier and earlier in the evening. However, by 10:00-11:00 am I am already starting to feel the sensations in my legs and arms and am forced to stand at my desk, walk the halls, etc. until I can get them calmed down. I think the most bothersome part to me is that I cannot sit through a meal at a restaurant, I cannot sit through a movie in a theater, and more than 30 minutes driving and I am looking for somewhere to stop and get out of the car. I know that these things are frustrating to my wife and kids, so I feel stuck.

What does your doctor think? He/she might not even now about it, sadly.

I was severely augmented long ago - I was able to reduce my dose tremendously by simply cutting back. Eventually I got to a point that I couldn't go beyond without consequences, but it was surprisingly easy to cut back. I tried stopping on my own a couple times - maybe if I had tried a few more day, but both times I gave up by the 5th night. Others have done it. I wimped out and had the doc prescribe opioids - but that was ten years ago before it was so hard.

[badnights]

@rjdishon
Another point to add to what Holland and Ann have told you, is to be sure your blood levels of ferritin are over 75 or better still over 100. Ferritin (an iron storage protein) isn't always included in iron workups, so you should request if specifically. It is the only lab test that is of direct relevance to RLS/WED. Low levels are associated with two things: increased severity of WED/RLS symptoms, and a higher risk of augmenting on dopamine-type meds.

So it might be important to take iron, as long as you have no counter-indications to it. Some of us who have WED/RLS have a problem in that our bodies dump iron even when we need it, so we end up with low iron stores unless we regularly replenish them with iron supplements (or IV iron infusions). An example: if I drop from 3 to 2 daily iron pills, my symptoms start to get worse about 2 or 3 weeks later -- - it takes that long for the iron stores to drop, but they do. When I start taking the additional iron again, it's 2 or 3 weeks before I notice the symptoms improve.

A note of encouragement: the withdrawal is worse than what you're experiencing now, but when it's all over with, your symptoms will be much better than they are now. You will be able to sit through meals again, and sit down to read and work. There is a chance that they'll be worse than they used to be before you started dopamine-type meds but they'll still be better than they are now. And that will never happen if you stay on the dopamine meds.

EDIT: you might be able to re-introduce a dopamine-type med AFTER you've gone through the withdrawal to let your body re-set (so to speak), and after you've raised your ferritin if it was low. As long as you keep the dose low, you are less likely to augment - but we've noticed that augmentation is easier the second time around, so be aware.

Sometimes the best choice is a combination of, say, a low dose of a dopamine-type med (preferably a long-acting one like Neupro patches) and an alpha-2-delta like pregabalin (Lyrica) or Horizant, or an opioid with one of those two. That's for after the withdrawal is over.

[rjdishon]

Viewsaskew, I may need to find another physician, because my current provider seems to think that what I am doing is my only choice. Badnights, I have not had my ferritin checked, so that is something that I will definitely bring up during my next visit (in March). Thank you for the information, I really appreciate the feedback.