Restless Legs Syndrome (RLS) Discussion Board

I'm glad something worked at least for a little bit. I found that my diet changes took months to show effect, and that's in line with what I've read too. So if you hope to heal with diet, it would be nice to have a medication to cover the (hopefully decreasing day by day) symptoms. I'm glad he's on board with getting you off the pramipexole. What did he say about the iron infusions? It is iron your brain is short of.

I have been taking 0.125 mg pramipexole for 10 years. Since getting my ferriin level to 100 a few years ago I now take pramipexole as needed. Is it inevitable that i will eventually augment?

TimG, if you are only taking pramipexole as needed, stay at your current low dose and keep your ferritin over 100, then it is not necessarily inevitable that you will experience augmentation. Augmentation occurs when pramipexole has to be used daily and usually at higher doses than you are taking.

Thanks for the helpful information, Steve. That's a relief. I take an iron supplement to keep ferritin level at 100; it's remained steady for over a year now, so I am able to cut back on 0.125 mg pramipexole dose from daily to as needed (on average 2-3 times per week). I consider myself lucky that RLS has decreased rather than increased.

Tim

@TimG
Brilliant! Keep doing whatever you're doing, not just the iron but diet too, and keep an eye on other medications, too.

I hope you can reduce even further. It would be better to have something faster acting, because it's hard to tell which nights you're going to need meds, and once you know, you have to wait 1-2 hr for the pramipexole to work. I wonder if you can get codeine or hydrocodone? Or 1 mg pills of hydromorphone? Or order some kratom. A fast-acting alternative might enable you to take only the meds you need, when you need them, not 2 hr late.

Beth,

Yes, it is sometimes a problem to put up with the wait for the pramipexole to kick in, and I don't want to take it every night just in case. It seems that about half the time I need a pramipexole I get symptoms early enough in the evening that I can take a tablet a couple of hours before going to bed.

I began taking l-theanine tablets for relaxation, and take one 200 mg every evening. I have not been able to figure out yet if this has any effect on the need for pramipexole.

My PCP says I can stop iron supplementation, but he doesn't know much about RLS, so I keep taking a supplement.

Since the CV-19 pandemic lockdown I have needed RLS medication fewer nights. I can't pinpoint a cause. Life has became very routine and I am exercising very consistently, eating healthy (American Heart Association guidelines) and staying at home except to walk the dogs and go to the grocery store weekly.

I haven't considered opioids and doubt my PCP would prescribe it. I guess I could give Kratom a try. In the meantime, I consider myself a lucky man to be afflicted with RLS in its milder form, rather than what so many of you have experienced.

You are indeed lucky, or you're doing something right , or both.

"My PCP says I can stop iron supplementation, but he doesn't know much about RLS, so I keep taking a supplement." Wise decision, and keep doing it. I have sad episodes in my history from stopping iron on the advice of a physician who didn't know much about WED/RLS. Just enough to be dangerous, as they say - he took me off iron and put me on Requip. Argh. And the whole sorry mess began.

Beth,

Another avenue I have explored is Ambien. When I occasionally use this, either because I can't get to sleep or wake up and am unable to get back to sleep, it works well and seems to calm my restless legs. Also it acts in about 20 minutes.

TimG wrote: ↑

Sun Jun 28, 2020 2:03 am

Another avenue I have explored is Ambien. When I occasionally use this, either because I can't get to sleep or wake up and am unable to get back to sleep, it works well and seems to calm my restless legs. Also it acts in about 20 minutes.

How odd. I cannot take zopiclone/Imovane, which is similar to Ambien, unless my sensory ("leg") symptoms are controlled. If not controlled, I am miserable - sleeping as a I walk, and vile WED/RLS symptoms so I can't lie down. But if I am just awake, no symptoms, it works well.

Beth,

It could be that because I am taking a low dose of 2.5 mg I don't have any side effects related to RLS. I'm one of those people for whom a low dose of some medications seems to work as well as the standard dose.

I am currently dealing with this drug augmentation and experiencing some additional symptoms. Has anybody else had problems with cramping in their feet and toes? Worried i might be developing neuropathy just to add to the fun!

homer001 wrote: ↑

Sat Sep 19, 2020 8:57 am

I am currently dealing with this drug augmentation and experiencing some additional symptoms. Has anybody else had problems with cramping in their feet and toes? Worried i might be developing neuropathy just to add to the fun!

Pramipexole actually caused neuropathy. When I stopped it, it went away. It also caused a slight tremor in my hands - I'd feel it when my fingers were on the keyboard but not yet typing.

Thanks Ann thats a great relief to hear cannot wait to get off this drug !

homer001 wrote: ↑

Sun Sep 20, 2020 8:21 am

Thanks Ann thats a great relief to hear cannot wait to get off this drug !

I couldn't wait, either. And, so happy when I was.

Except I take it again, lol. Was off for three years, then learned how to take it very differently (and not regularly) as well as ONLY with a high ferritin level. Very different experience.

Was thinking the same thing for the future but small steps for now i think thanks again for your tips