Introducing myself

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
ViewsAskew
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Location: Los Angeles

Re: Introducing myself

Post by ViewsAskew »

Excellent to hear.

My experience was similar to Steve's. I augmented on one, also on the other.

I cannot remember...how high is your serum ferritin? I found that key for me to not augment as quickly, allowing me to use pramipexole for longer times before I had to stop it.
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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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Introducing myself

Post by badnights »

Based on my imperfect understanding of a subject that even researchers in the field don't understand (so for whatever it's worth!) I tend to think a long-acting DA just masks whatever dysfunction the DA is causing, for longer than a short-acting DA would. I don't know if my nebulous negativity is useful to you in making this choice; the information you need to make it just doesn't exist.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stjohnh
Posts: 1080
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Introducing myself

Post by stjohnh »

Well, here's my theory of DA's and augmentation: As time goes on at a particular dose of a DA, the dopamine receptors get less and less responsive to the DA, requiring higher doses to achieve the same symptom control (the dose increase requirement is a well known aspect of DA treatment of RLS). At some point the DA receptors become completely saturated, making increasing doses ineffective and causing severe side effects (augmentation). Keeping the DA dose low, such that the patient has a spell each day of mild RLS symptoms, helps to keep the receptors from losing too much sensitivity. Short acting DAs cause a spike in the blood level with each dose, that spike is what saturates the receptors, leading to sensitivity loss and ultimately augmentation. Long acting DAs have less of that problem because the med is released slowly into the blood stream, avoiding the high blood level spikes that short acting DAs have, leading to the observation that long acting DAs have fewer problems with augmentation, but the augmentation risk is still there.

It is well known that saturation of some brain receptors causes VERY serious side effects in some cases- think the deaths and brain damage that occurred in France a couple of years ago with an accidental overdose during the study of an experimental pain medication.
Blessings,
Holland

obviouslyjim
Posts: 10
Joined: Fri Apr 27, 2018 6:56 pm
Location: Auckland, NZ

Re: Introducing myself

Post by obviouslyjim »

Hi again. This is my first post in almost a year. I've tried searching the Board but without success... I am concerned about a change in symptoms, first noticed ~3 months ago: extreme tiredness in the early afternoon (@ 1:30pm) [to the point where I'm falling asleep at work - not a good look!], followed by twitchy symptoms at 4pm. Weekends too. Walking usually helps (but not always feasible). My usual symptoms kick-in after dinner (7:30pm-ish).

My current meds: 0.25mg pramipexole + 10mg Oxycodon slow-release (plus 5mg oxycodone quick-release for breakthru symptoms).

Am I augmenting? Possibly, but it's such a low dose of pramipexole. I was up to 1.0mg of pramipexole 1.5 yrs ago (augmenting) before doing a 2-month pramipexole-washout. And I've rarely had afternoon symptoms before (not counting the times trying to take an afternoon nap).

Does this sound like a pattern you've seen before?

Thanks,
Jim.
Cheers,
Jim.

badnights
Moderator
Posts: 5606
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Introducing myself

Post by badnights »

Hi obviouslyjim, welcome back (except I wish you had no reason to come back). I can't explain the tiredness appearing after a year, unless side effects sometimes do that (next-day sudden tiredness can be a pramipexole side effect). It could be simply that your sleep is not good enough.

The appearance of symptoms at 4 instead of 7, however, does seem like augmentation. You say your "usual symptoms" kick in again around 7:30. What happens in between? Do the 4 pm symptoms abate at some point? If not, then it really seems like augmentation. If they do abate and then come back, I'm not sure but it could still be augmentation.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stjohnh
Posts: 1080
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Introducing myself

Post by stjohnh »

obviouslyjim wrote:Hi again. This is my first post in almost a year...
I am concerned about a change in symptoms, first noticed ~3 months ago: extreme tiredness in the early afternoon (@ 1:30pm) [to the point where I'm falling asleep at work - not a good look!], followed by twitchy symptoms at 4pm. Weekends too. Walking usually helps (but not always feasible). My usual symptoms kick-in after dinner (7:30pm-ish).

My current meds: 0.25mg pramipexole + 10mg Oxycodon slow-release (plus 5mg oxycodone quick-release for breakthru symptoms).

Am I augmenting?..
Doesn't sound like augmenting to me. Could be a progression of RLS or some other unrelated medical problem. Time to see your doc if you haven't already. Although 0.25 mg pramipexole is fairly low, it is higher than I would take after previously augmenting. I think anything above 0.125mg is too high for someone who has previously augmented.

The symptom of daytime fatigue/sleepiness/zombie feeling IS extremely common for people with severe RLS, and still common in those that seem to get enough sleep. I have wondered if there is a third independent major symptom cluster in RLS: 1. Urge to move 2. Sleep disturbance. 3. Extreme daytime fatigue.
Blessings,
Holland

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