Restless Legs Syndrome (RLS) Discussion Board

Has anyone heard of brain chemistry or Neuro pathways being altered by DA's such that one "needs" at least a small amount of DA, after being on them for years? In ordering the Relaxis, i got to talking to the rep about my experience with DA and he said there was a mounting evidence of this.
If so, then i guess this would explain why a number of people need a tiny amount of DA in the mix

I don't think I have heard that. I don't use it because I need it, rather it helps me reduce the opioid and helps reduce some of the opioid side effects. I am find on the opioid without it in terms of the RLS.

Did the person offer any studies?

I looked around a bit on the PubMed site to see if I could find any related studies. Admittedly didn't spend a lot of time, but the only related topics I could find were about DAWS (Dopamine Agonist Withdrawal Syndrome) and one mentioned that a small percentage of people have a continued need for the med. Hopefully as more doctors are in tune to current thinking on keeping dosages low, this will be less of a problem in the future. Although that may not be possible for Parkinson's patients. I had a hard time when I went off of a dopmine agonist abruptly from a higher dose. (Not one of my brightest moments.) It definitely changed my brain - not sure if it was the chemistry or pathways or what it was. I developed a variation of synesthesia. But I was able to get completely off the med. I'm wondering if the continued need for the med isn't that the RLS or PLMD is still present and still needing treatment. After reading about the symptoms of DAWS, I think I was a lucky duck. Am interested in reading if anyone finds info more directly related to the original question.

DAWS is an issue at higher doses. As with anything, there are always a few outliers. We have a member who had DAWS as a lower dose, though. I asked Dr. Buchfuhrer about it a few years ago -at the time he'd never seen it in his patients and he always advocated immediately stopping DAs when the dose was typical for an RLS patient. We have had a few people here who've been at Parkinson doses - very scary!

I have also seen that there is a component to DAWS where there is an increased risk if the person was experiencing compulsions due to the DA. Not everyone who is experiencing dopamine compulsions is at risk of DAWS, but apparently it increases the probability.

Has anyone heard of brain chemistry or Neuro pathways being altered by DA's such that one "needs" at least a small amount of DA, after being on them for years? In ordering the Relaxis, i got to talking to the rep about my experience with DA and he said there was a mounting evidence of this.
If so, then i guess this would explain why a number of people need a tiny amount of DA in the mix

Like the others, the only thing I've heard of in that regard is DAWS, in which people are very sick (not just whatever untreated disease they were taking the meds for) and do not get better even after a year without the DA, but their symptoms do go away when they go back on the DA. This is something different than what you're talking about.
You probably don't need the DA, but you need treatment for worsened symptoms. Hopefully, the worsening is not permanent but I expect it will be long term.

See my reply to your other post for ideas on combining different classes of medication in order to keep your dose low.

As long as you're taking a DA, you must keep your iron stores high enough to help prevent augmentation. Even if you're not taking a DA, keeping your iron up will reduce symptom severity for most of us. The iron stores in your tissues are approximated by the amount of ferritin in your blood. Ferritin for people with WED/RLS should be over 75 ng/ml, or even 100.

IF you need ammunition to show your doctor, follow the link below my name to find resources that deal with iron. The Foundation's Medical Bulletin is the best for all these issues if you can only get one publication.