Is augmentation permanent??

[Dr.Placebo]

I have never been able to see an RLS specialist and so have been trying to understand and manage my disease be myself by reading and experimenting. With all my reading I have not found any definitive statement as to whether the altered symptoms due to augmentation completely go away with discontinuation of the offending drug or not. My symptoms changed when I took ropinerole 4 years ago and have never returned to the way they were. specifically, prior to DA I had exclusively sensory symptoms--intense need to move my hands when trying to fall asleep, preventing sleep. After taking ropinerole I developed involuntary movements, twitching, which seem to resolve when I stopped the DA but then returned and now I continue to have that as my main symptom, including during the day when trying to nap (unable), even though I haven't taken DAs for a long time. The sensory restlessness I had in my hands for about 10 years is gone, replaced by almost purely motor sx--twitching and jerking, and a milder sort of vibration in my chest, all of which prevent sleep. Is this a permanent effect of augmentation?

[Rustsmith]

There was a research publication a year or two ago that hinted that augmentation causes permanent changes to the brain's structure. It was just one study and conclusions like that are difficult to confirm, at best, but their conclusion indicated that augmentation causes a permanent worsening that goes beyond simply the normal worsening with age.

There was a summary of the paper stored here, so if you do a search, you might be able to find it.

[badnights]

I have never been able to see an RLS specialist and so have been trying to understand and manage my disease be myself by reading and experimenting. With all my reading I have not found any definitive statement as to whether the altered symptoms due to augmentation completely go away with discontinuation of the offending drug or not. My symptoms changed when I took ropinerole 4 years ago and have never returned to the way they were. specifically, prior to DA I had exclusively sensory symptoms--intense need to move my hands when trying to fall asleep, preventing sleep. After taking ropinerole I developed involuntary movements, twitching, which seem to resolve when I stopped the DA but then returned and now I continue to have that as my main symptom, including during the day when trying to nap (unable), even though I haven't taken DAs for a long time. The sensory restlessness I had in my hands for about 10 years is gone, replaced by almost purely motor sx--twitching and jerking, and a milder sort of vibration in my chest, all of which prevent sleep. Is this a permanent effect of augmentation?

How interesting that you only feel it in your hands.

Re long-term damage from augmentation, I just posted the same thing in a different forum -- It used to be that papers would claim (without references) that after the withdrawal period, augmented symptoms would return to a pre-DA baseline. I have heard so many people, myself included, say this did not happen.

Do only people who were not on DAs for long recover completely? No, because my entire time on DAs was only 4 months. Do only people who were not augmented for long recover completely? Maybe. I was augmented almost the entire 4 months, is that long enough? Have other people recovered completely despite being augmented for longer? Have others not recovered despite being augmented for less time?

But I don't think it lasts forever, this post-augmented-withdrawal worsened level of symptoms

[Dr.Placebo]

Beth, that is "interesting" that you augmented in just 4 months because so did I, and not at a very high dose.

Anybody else out there who augmented quickly and didn't revert to their pre-DA condition? Maybe it's a thing.

[ViewsAskew]

Beth, that is "interesting" that you augmented in just 4 months because so did I, and not at a very high dose.

Anybody else out there who augmented quickly and didn't revert to their pre-DA condition? Maybe it's a thing.

It was for me, too. We know of at least a handful of people here who didn't revert back. I augmented in a week. Went from a couple times a month (was treated for PLMS) WED/RLS to 24/7. It's slowly reduced to daily about 12 hrs, but I am so medicated, I really don't know what it would be off.

[Polar Bear]

3 years ago I came off 5mg Ropinerole and like Ann I am so medicated I have no idea what I would be without meds. Given that I suffered RLS symptoms 24/7 in arms and legs prior to starting my first meds (Ropinerole in 2005) I'd be afraid to find out.

[badnights]

Beth, that is "interesting" that you augmented in just 4 months because so did I, and not at a very high dose.

Anybody else out there who augmented quickly and didn't revert to their pre-DA condition? Maybe it's a thing.

I augmented in 3 or 4 DAYS, actually. I stayed on DAs for 4 months because it took over a month to see the doctor who had prescribed the ropinirole, and he just switched me to pramipexole, so I spent another couple months on that before I could see him again. That was my total time on DAs. At the time, it was almost unheard of to augment in days - - but I know my ferritin was probably in the low 20s at the time, perhaps lower, so it's not surprising.

[Dr.Placebo]

So evidently rapid augmentation, and permanent augmentation, is not unusual. And yet, and yet, STILL the medical establishment is convinced augmentation can only occur if you've been on high doses for years. So much education of medical providers is still needed. It really needs to happen in Medical School. Once doctors are fixed in their ways it is very hard to change them. How would I know this?

Hmm. When I have my appointment with Dr. Winkelman (if I can last that long) and I have time after going through my complicated history and getting down on my knees and begging for help, maybe I will put a bug in his ear about changing the Med School curriculum--he is affiliated with Harvard Medical School.

[ViewsAskew]

So evidently rapid augmentation, and permanent augmentation, is not unusual. And yet, and yet, STILL the medical establishment is convinced augmentation can only occur if you've been on high doses for years. So much education of medical providers is still needed. It really needs to happen in Medical School. Once doctors are fixed in their ways it is very hard to change them. How would I know this?

Hmm. When I have my appointment with Dr. Winkelman (if I can last that long) and I have time after going through my complicated history and getting down on my knees and begging for help, maybe I will put a bug in his ear about changing the Med School curriculum--he is affiliated with Harvard Medical School.

I see one of the most respected RLS docs...and he still says, I believe, that it cannot happen. He is great in so many ways and I'd be screwed without him....yet I am positive it happens.

[badnights]

So evidently rapid augmentation, and permanent augmentation, is not unusual. And yet, and yet, STILL the medical establishment is convinced augmentation can only occur if you've been on high doses for years. So much education of medical providers is still needed. It really needs to happen in Medical School.

That's why I give money to the Foundation. I don't know of anyone else working to change things but they are. I don't know what else I can do.

Do talk to Winkleman. (Why is it that so many WED/RLS specialists are kind and compassionate people, like Winklemann and Dr. B?) I'm curious what his experiences have been with patient recovery from augmentation.

[Frunobulax]

There was a research publication a year or two ago that hinted that augmentation causes permanent changes to the brain's structure.

If we know anything about addictions, then that they cause long-term, often permanent changes. So an alcoholic or ex-smoker is at high risk for a relapse if she/he ever consumes alcohol/nicotine, even decades later and in relatively small amounts.

Addictions are driven by changes to the dopamine system. Seems kinda ludicrous to assume that drugs that mess with the dopamine system have no permanent effect, no? The burden of proof should be that dopamine agonists do not cause permanent damage, and there is not a shred of evidence there. All studies that I've seen just look at augmentation itself but not at reversal of augmentation.

I have questioned for many years whether dopamine agonists should be first line of treatment for RLS, especially considering the horrendous side effects that can completely ruin lives. Unfortunately there seem to be very few medical professionals that share my concerns. But then, I'm biased as I suffered from severe impulse control disorders when taking Pramipexole.

<Sarcasm>Tinfoil hat wearers unite! </Sarcasm>

[Rustsmith]

I have questioned for many years whether dopamine agonists should be first line of treatment for RLS

DAs are now relegated to the third level of treatment in the updated treatment algorithm due to the near certainty for augmentation as well as 15% chance of causing impulse control disorder. Unfortunately, the vast majority of doctors do not know this and only get their info from the pharmacy reps who are more interested in pushing DAs since they don't get a profit off of gabapentin or iron supplements (or even opioids for that matter). As so many say other fields, "follow the money".

[SquirmingSusan]

I augmented within a few weeks. It got to be when I took a DA, my whole body felt like it was burning. There was no way to taper off. I just stopped taking the med. And then, I had to move, and move, and dance around. I could not sit still. The prescribing doctor prescribed Vicodin, but wouldn't prescribe enough for 24-hour coverage, and sent me to a pain clinic. They put me on methadone.

That was probably 15 years ago, and my RLS has never gone down to the mild level it was before taking the dopamine agonists.

[Frunobulax]

I have questioned for many years whether dopamine agonists should be first line of treatment for RLS

DAs are now relegated to the third level of treatment in the updated treatment algorithm [...]

I keep forgetting that the US has a completely different treatment scheme Here in Germany, dopamine agonists were first line of treatments until 2 months ago when a new guideline was released, gabapentin/lyrica were fallback and opioids for refractory RLS. Seems like only 1 in 100 doctors has ever heard about iron IVs, and it was tough to find a doctor to administer my iron IV because they are all scared sh*tless that, IDK, we all wither and die on the spot from that much iron. (Wasn't a financial issue as I had to pay everything myself.)

The new guidelines aren't much better, they do recommend iron as first line but only if the ferritin is <75 or transferring <20%, and IVs only in special cases. Then second line are DAs, then opioids. Frustrating.

On the plus side, it's much easier to get opioids here, even though this still varies from doctor to doctor. They were always heavily regulated so we never had an "opiod crisis"...