@mmmerrimac
Hi mmmerriac, I think what is most valuable on this forum is people like you, who shared their personal experiences with augmentation. Hopefully, others will learn from your experience---not be blindsided if/when augmentation hits them.
...As far as doctors' role in the whole unfortunate mess, I think the average primary care doctor just didn't know. Initially, patients came back and were so pleased with how drugs like Requip worked. My (family practice) primary care doctor insisted it was a great drug. The previous RLS Treatment Guidelines (about 2014) listed dopamine agonists as the first line drugs to give for RLS. The updated Guidelines weren't available until 2024 (or 2025).
My guess is it took specialists, who only saw patients with RLS, to put the pieces about augmentation together. I suspect the patient was seen (by generalist doctors) as the reason increased doses were needed and other symptoms appeared. In the physician's mind, it couldn't be the drug (because it worked so well). So, it was something in the patient causing augmentation symptoms.
Also, augmentation can happen at any interval after starting the drug--a short time, or medium length of time, or a long time--so primary care physicians probably didn't notice a pattern (and then certainly didn't blame the drug.)
Yes, information was "out" before 2021 (when I read about augmentation on Dr Early's website--Johns Hopkins) but there was not such a concerted effort to education doctors, in general, as well as warn us patients.
The fact your doctor knew it was augmentation five years after first prescribing for you means the word has gotten out--a positive thing for everyone with RLS.
Although looking at a positive change in medical practice (to a future when no one with be prescribed dopamine agonist drugs for RLS) doesn't help you while you are going through a rough patch right now.
I understand augmentation is not an easy row to hoe.
It's so good the naltrexone helps. (I wonder if others, like our friend kodi, could be helped by this prescription as well). ??? I have no idea what drugs are used for augmentation.
I don't know anything about naltrexone (except I just googled it) but I take subloxone (which is a combination of buprenorphine and naloxone) and both drugs are intended (primary use) for people with drug addiction problems. Naltrexone and naloxone are both opioid agonists--they block opioid receptors. In my case, it's the buprenorphine which is supposed to work on my RLS (not the naloxone). But, isn't it interested that we are both helped (coincidently) by drugs intended for drug addiction treatment? I wonder if naltrexone is commonly given for augmentation. Anyone else been given this prescription? Please, post if you have.
RLS is difficult enough without the addition of augmentation. I contribute to this forum because the more we all know (and can learn from each other) the better we can manage symptoms of RLS (as well as augmentation).
I really think, mmmerrimac, it would be great if you kept us updated on how you are doing--both with the augmentation symptoms and with RLS.
@missjb
Hi, just joined for my incredibly bad RLS, now in augmentation for the second time in something like 40 (?) years (I’m 75). I’m enjoying your comments here very much. I don’t see where I might have written privately, so I’ll just say I think you meant to use the word “antagonist” here. “Naltrexone and naloxone are both opioid agonists--they block opioid receptors.”
Thanks for your help!