Restless Legs Syndrome (RLS) Discussion Board

Most people do not augment using ropinerole or pramipexole for at least a year. Once you stop it and don't take it for awhile, you can likely take it safely for at least a week. I've been testing myself.

I originally augmented in about ten days, and at the worst, would augment with one dose. After a few years off, I would augment in about 4-5 days. Then I had 2 infusions - my serum ferritin is now in the mid 100s. We know that people who have ferritin over 100 augment infrequently compared to those under 100.

With my ferritin this high, I tested pramipexole for a week. No augmentation. Then a week off, then two weeks on. No augmentation. Then a week off and three weeks on. No augmentation. My last test was for one month. No augmentation.

badnights' post about ferritin was critical. But, even before my ferritin was high (it was in the teens), I was able to use pramipexole for 2-3 days without issue, then alternate. It allowed me more freedom in what I took and helped me cover when symptoms were high.

I will add a note of discord here on ferritin in the spirit of everyone is different.

I augmented on pramipexole at about one year, but I was also taking enough iron to increase my ferritin from 40 to over 350. I do not doubt that increasing ferritin to over 100 probably helps to reduce the chances of augmentation, but it does not prevent it.

Of course, it also looks like I have augmented on Neupro at one year (with ferritin now at 150), and that was not supposed to happen this fast.

I may have overreacted when I said never to reintroduce d.a.'s but it
was a reflection of the horror we all suffered during d.a. augmentation
and withdrawal. D.A.'s, for most, work so well in the beginning that it
would be very tempting to take them too long. For me, to ignore the
adage, "Better safe than sorry" usually does not end well.

[quote="Rustsmith"] I do not doubt that increasing ferritin to over 100 probably helps to reduce the chances of augmentation, but it does not prevent it.

Of course, it also looks like I have augmented on Neupro at one year (with ferritin now at 150), and that was not supposed to happen this fast.[/quote

Absolutely agreed. There is no way - that we know of yet - to get the iron into the brain. To me, it's a gamble worth trying. It clearly doesn't work for about 20% - but that leaves 80% that it does help. Worth it in my opinion.

Orrel wrote:I may have overreacted when I said never to reintroduce d.a.'s but it
was a reflection of the horror we all suffered during d.a. augmentation
and withdrawal. D.A.'s, for most, work so well in the beginning that it
would be very tempting to take them too long. For me, to ignore the
adage, "Better safe than sorry" usually does not end well.

I think we approach it wrong in the beginning. If we never gave DAs unless a person's ferritin was over 100, we'd eliminate a lot of problems. We'd still have them, but many fewer.

If we started alternating them - even after a few months to take a short break - we might see a teeny-tiny percentage of issues.

I've had three instances of augmentation: two while on Pramipexole and one while on Ropinerole. In each instance augmentation came on with a vengeance, and I had to withdraw from the drug quickly.

I've been on pramipexole ( 0.125 mg) for about 4 years. My ferritin was about 20 when I started, and has now increased to almost 100 with a daily 325 mg ferrous sulfate tablet. Thankfully, I have not experienced DA augmentation.

On this the last day of The Year of our Lord 2015, I just wanted to take time to say a huge THANK YOU to the RLS Foundation for hosting this Topic of the Year, to all of the moderators and contributors that shared their experiences, and to all the doctors that shared their expertise on this topic by presenting webinars for the Foundation. I can personally attest that it is very easy to become complacent in dealing with this aggravating condition, out of fear or just plain laziness, even though the symptoms are ever-present to remind us that it is not going away. The Foundation's shining a light on this issue has helped motivate me to find a way through it, so thanks again!

May 2016 bring peace, prosperity, good health, and restful sleep to all of us!

Jimmylegs, I passed your note along to the Foundation staff. I think that you made their day

JimmyLegs44 wrote:On this the last day of The Year of our Lord 2015, I just wanted to take time to say a huge THANK YOU to the RLS Foundation for hosting this Topic of the Year, to all of the moderators and contributors that shared their experiences, and to all the doctors that shared their expertise on this topic by presenting webinars for the Foundation. I can personally attest that it is very easy to become complacent in dealing with this aggravating condition, out of fear or just plain laziness, even though the symptoms are ever-present to remind us that it is not going away. The Foundation's shining a light on this issue has helped motivate me to find a way through it, so thanks again!

May 2016 bring peace, prosperity, good health, and restful sleep to all of us!

I second that!

Ah I wish again that we had a "Like" button! I love our community here.

A like button would be awesome, in the meantime

Happy New Year everyone!

In 2015, the RLS Foundation's Topic of the Year was Augmentation. Since it is now 2016, we plan to retire the discussions in this forum to a new forum that will be titled something link Archived Discussions. The discussion threads for Augmentation will still be available for use, but we will need to make way for the new Topic of the year for 2016.

However, we will not be doing that until sometime in February or early March when the Foundation makes their announcement of new Topic of the Year for 2016.

Until that time, our Topic here will remain Augmentation.

I suspect our Topic of the Year will follow the Foundation's March to April fiscal year, rather than the calendar year.

I began experiencing augmentation after a number of years of being on Miramax, and having to supplement my sleep with vicodin. my arms began jerking and flailing at night, my partner reported that I was pounding the mattress. that's when I remembered my father's pain had increased from his legs to his arms.
I found a neurologist who prescribed horizant and gabapentin , while we attempted to reduce the mirapex I was taking.
I was sleeping much better, until I got to .025 milligrams of mirapex.. I could not reduce beyond that, I was staying up late till 2/ 3 in the morning, dozing and waking and walking and eating.
in desperation I would pop a hydromorphone, left over from a previous surgery. I would finally pass out into a deeply drugged state.
last night, along with my medication, I ate a small pot brownie. I slept all night long without waking at all. it was marvelous. I think tonight I just may try to reduce one of my medications, while I in just a little more pot brownie. hopefully report back. now if we could just get Florida to legalize medical marijuana., even my neurologist is supportive of using pot medically.