RLS Dead End?

Have you discussed and researched the phenomenon of ‘augmentation’?
This seems to be when the body responds to the dopamine agonist drugs and eventually makes it worse.
Worth looking into as you make your choice of treatments.

Yes, my husband has been prescribed various doses of ropinerole, pramipexol, levodopa etc…. He spent nearly 3 years working with a neurologist, adjusting dosages & exploring various registered drugs. I do think that he started experiencing the effects of augmentation. He also tried, unsuccessfully, gabapentin & pregabalin (Lyrica). None worked,

As an aside, I’d been prescribed oxycodone for pain associated with a T1-S1 spinal fusion. Out of sympathy, I I occasionally shared my oxy (I know it’s not condoned) & he found that it worked better than any of the drugs previously prescribed for him. (This was before the RLS Foundation published excerpts from studies & recommended opiates as opposed to drugs causing augmentation).

His doctor(s) read & researched the info from the Foundation that I provided & prescribed oxycodone for my husband. He times the hourly dosages & finds that the current prescription isn’t working well for him.

When your loved one says ‘I don’t know how many more years I have to live, but I don’t want to live this way’, it’s extremely alarming.

So, now my husband is taking an anti-depressant & it seems to be helping a bit. Next week we’ll discuss his oxy dosage, or the possibility of adding gabapentin back into the mix.

He’s under the care of a doctor who is willing to work with us to treat the symptoms. I just wish ‘we’ could discover the source of the problem & treat it.

Finally, I must say that our membership in the RLS Foundation and this Mayo sponsored forum have been invaluable finds.

My apologies for the long post. I suspect that many others have, or will take similar journeys. Maybe this will help them.

You could try what is suggested by Meital James in this article in natural-alternative-therapies.com “Magnesium for Restless Legs - Does it work?” 2023/01/02 I tried the suggestions and they have certainly worked for me.

You will augment on this drug. You will need more and more. Then it makes things even worse.

Mark Buchfuhrer, MD Is a great reference for the treatment of RLS
Dr. Winkleman has also written how they had it wrong and it should not be used as it was before the evidence proved the augmentation.
In recent years, it’s come to light that as many as 50% to 70% of patients using these medications develop a severe worsening of symptoms called augmentation within 10 years.2,3 In such cases, RLS symptoms spread to the upper extremities and start earlier and earlier in the day.
/sleepreviewmag.com/sleep-disorders/movement-disorders/restless-legs-syndrome/opioids-rls/
I am new and cannot post a link. I took off the HTTP in the addresse.

We discovered the sad truth after becoming members of the Restless Leg Foundation. My husband had already tried gabapentin and Lyrica with his primary physician. The neurologist prescribed increasing dosages of ropinerol & pramipexol in combination of gabapentin & oxycodone. We finally settled on oxycodone when out of frustration, he tried my oxycodone, finding that it helped more than anything. Then we found the RLS Foundation, discovering that what we’d stumbled upon had become the recommended treatment. Unfortunately the damage due to augmentation has already been done….things have gotten much worse over the years. We did test ferritin levels, doing an iron treatment without improvement. There is no one treatment for all.

Do yourself a favor, become a member of the Restless Leg Syndrome Foundation & keep current on emerging treatment.

I am a member of the RLS Foundation. Thankss

I gathered that. I was posting for the general population & apparently posted only to your reply. Sorry.

I too was put on pramipexole .5mg, and for 2 years I was doing okay- but it started getting worse, so I did some research and came across the augmentation and knew that was my problem. I had my yearly appointment last Friday and the Dr. wanted to up my dosage. Thank God I had read about augmentation from RLS Foundation prior to the appointment, I told him flat out- no more , but sadly, I’ve only had 4 hours sleep in 5 days.
If anything works, I’d love to know. Pickle juice worked for leg cramps, but not the RLS. I am scheduled for a SIBO test in September - hoping that may provide insight.
Good luck on your quest!

I have had RLS for 3 years now . First I was taking 125 mg of Pramipexole . after 12 maths it needed to be increased to 250 mg . After 6mrhs Augmentation started to really happen but my doctor said increase the dose .It didn't work .4bifhrs without sleep .I had it in both legs and sometimes my firearms as well I was prescribed Ropinerole but while waiting for that to start working I was placed on Clonazapan 2mg for 3 days

Success The Ropinerole started working and I have been on it for the last 18 months although I have had to recently increased the dose from initially .25 mg to .5 mg everything ok for now I tried Lyrica in my first time of treatment but didn't work at all. If Augmentation starts to happen again I will go onto Rogitine I think that's how you spell it . Hope this information helps Clonazapan is a short term drug but for the transition period It worked great for me Regards Frank

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