Topic of the Year

Use this forum to discuss any issues associated with Augmentation
ViewsAskew
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Re: Topic of the Year

Postby ViewsAskew » Thu Sep 10, 2015 3:54 am

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.
Ann - Take what you need, leave the rest

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Rustsmith
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Re: Topic of the Year

Postby Rustsmith » Thu Sep 10, 2015 7:02 am

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Orrel
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Re: Topic of the Year

Postby Orrel » Thu Sep 10, 2015 7:30 am

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.

ViewsAskew
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Re: Topic of the Year

Postby ViewsAskew » Thu Sep 10, 2015 5:56 pm

[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.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Topic of the Year

Postby ViewsAskew » Thu Sep 10, 2015 5:58 pm

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.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

needhamal
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Re: Topic of the Year

Postby needhamal » Sun Oct 25, 2015 4:56 pm

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.

TimG
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Re: Topic of the Year

Postby TimG » Thu Dec 24, 2015 6:12 am

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.

JimmyLegs44
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Re: Topic of the Year

Postby JimmyLegs44 » Thu Dec 31, 2015 5:27 pm

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!
The best way out is always through. - Robert Frost

Rustsmith
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Re: Topic of the Year

Postby Rustsmith » Thu Dec 31, 2015 8:57 pm

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

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Topic of the Year

Postby ViewsAskew » Thu Dec 31, 2015 10:43 pm

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!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Topic of the Year

Postby badnights » Fri Jan 01, 2016 12:48 am

Ah I wish again that we had a "Like" button! I love our community here.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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Polar Bear
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Re: Topic of the Year

Postby Polar Bear » Fri Jan 01, 2016 1:16 pm

A like button would be awesome, in the meantime :thumbup:
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: Topic of the Year

Postby Rustsmith » Sun Jan 03, 2016 10:12 am

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Topic of the Year

Postby badnights » Wed Jan 13, 2016 7:08 am

I suspect our Topic of the Year will follow the Foundation's March to April fiscal year, rather than the calendar year.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Sleeplessinbb
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Re: Topic of the Year

Postby Sleeplessinbb » Wed Jan 20, 2016 12:27 pm

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.


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