new here

[onboard]

Hello I just joined the foundation in June, though I have known about it for several years (should have joined then). I am hoping there is someone out there who suffers from rls and is also on peritoneal kidney dialysis. I have had rls for 20+ years and have been on dialysis for 3 years. I am certain that the rls has progressed to augmentation. I have been (or are on) all the usual drugs and have tried all the non-drug suggestions I have seen. Nothing is working and and I am desperate for any thoughts you may have, whether on dialysis or not.

I am not very discussion board savvy, so please bear with me as I muddle my way through.

[ViewsAskew]

Hi onboard,

No one that I no of currently is on dialysis. I have read how dialysis folks have this nasty disease about 80% of the time, though. Must be miserable.

[Polar Bear]

I too have read that dialysis patients suffer a higher % of rls and feel for you.
When you say you've tried all the usual drugs does this include the opioids. Perhaps if you were to give some information regarding what meds maybe helped a little or not at all it could provide a starting point to reassess.
If you feel you might have augmented then presumably you have been taking pramipexole or ropinerole. Take a look at the Augmentation Forum. You will see that if you are on one of these DA medications you will need to taper off it. Not easy, but doable with the benefit of an opioid.
Please provide some more in depth information regarding your meds and your treatment.

[onboard]

Thanks for the replies. I have been on Requip for many years and switched to Mirapex maybe 10 years ago. That seemed to be losing it's effectiveness last fall, so my kidney doc tried me on gabapentin and for a short time lirica. Use of opioids was strongly discouraged and I was returned to 1 mg. Requip/day. To make a long story short I spent about a month with no sleep and pretty much continuous rls. I spent 2weeks in a rehab hospital because between the sleep deprivation and rls, I could hardly walk. Requip was increased to 1mg. 3 times/ day. That worked great for about 2 months and now the rls is back with a vengeance! If only I had joined the foundation when I first saw the website, maybe I could have saved myself and my poor husband a lot of agony. That is if I could have gotten anyone to listen to me! I plan to take info on augmentation and opioids when I see my PCP next week. The kidney doc is new and doesn't know me, and the neurology NP looked at me like I had 2 heads when I mentioned augmentation. I think the PCP will be my best bet. In the meantime I am taken 2.5 mg hydrocodone at bedtime on my own. Thanks for reading and hope this will give you what you need to know.

[Polar Bear]

You were on Mirapex and Requip/Roperole for many years (the DA medications). When they seemed to lose effectiveness this was likely augmentations. I wonder what dosages you were taking by that time. Your kidney doctor then tried you with gabapentin and Lyrica. If you were augmenting it is unlikely that either of these would have been sufficient to treat the augmentation and indeed also the withdrawal from the DA meds. To come off a DA med requires that you taper and a kind doctor would prescribe an opioid medication to help with the taper and the withdrawal while considering which route you should next be taking.
Am I correct in thinking that you had a break from the DA meds and then You were restarted on Requip 1mg. It is pretty high to start at 1mg. Note.... 1mg is now considered to be the max daily dose forrequip/ ropinerole. You should start at the lowest dose.

All of this was bad enough that you ended up in Rehab for two weeks and they increased your requip/ropinerole to 1mg x 3 times daily.
Again note..... this is 3 times the max daily dose recommended by our rls experts.
As is typical with augmentation the increase worked for you for a time and then as you say, your rls came back with a vengeance.

Please do take the opioid /augmentation documentation to your PCP. If you highlight the relevant parts it helps to save time.
Do you think your PCP would be willing to be educated about rls. A willing and helpful PCP who wants to help will be your best friend. Most of us who have augmented will be using opioid pain relief and I hope your doctor will be cooperative regarding this if it is the route you would wish to try.

As for the Neurology NP looking at you like you had two heads..... goes to show they know nothing about rls, it's treatment, and the meds used to treat it.
I hope your 2.5mg hydrocodone at bedtime is helpful

By the way, there is a wonderful book called Clinical Management of Restless Legs Syndrome (Second Edition). It is written by Lee, Buchfuhrer, Allen & Hening. They are very prominent and helpful rls experts who know exactly what they are talking about. They are great friends of our Restless Legs Foundation. It is available on Amazon at about $35 or thereabouts. My copy is sitting beside me as I'm here typing. It is dog eared and has pencil notes all over it from when I have taken it with me to my doctor. It is very useful and worthwhile. Easy to read.

Good luck with your PCP appointment next week. Please do update and tell us how you get on.