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Author Topic: Restless legs Syndrome on Dialysis  (Read 1792 times)
Sugarlump
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10 years on and off dialysis

« on: June 07, 2013, 12:03:44 PM »

Anybody successfully treated this annoying condition?
I get it bad on dialysis after the first hour or so and sometimes at night, can't sleep and find myself roaming the house restlessly  :(

My iron stores and hemoglobin levels are both quite low and I understand this can be a factor, but one I have had for quite awhile whereas the restless legs
are quite new and very annoying!
 :Kit n Stik;  :Kit n Stik;  :Kit n Stik;

I have quinine sulphate tabs (for leg cramps) don't know if that will help at all?
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
PatDowns
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20+ years in center hemo

« Reply #1 on: June 07, 2013, 03:42:18 PM »

Not getting enough dialysis treatment (even if your blood work is "adequate") can cause RLS.  Try increasing your run time by 30 minutes per treatment if currently less than 4 hours.

A study was done showing those who do daily hemodialysis (NxStage) suffer less from RLS:

http://cjasn.asnjournals.org/content/early/2011/03/17/CJN.10451110.abstract


Another study showed that Biotin deficiency could play a role as well:

http://www.docguide.com/restless-legs-syndrome-could-indicate-biotin-deficiencies-patients-dialysis

Some patients have gotten relief by taking Mirapex (pramipexole dihydrochloride).  Ask your nephrologist.  However, it will only be treating the symptoms of RLS, not the cause.
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Willis
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« Reply #2 on: June 07, 2013, 05:50:16 PM »

I had RLS for years even before I had to start dialysis. Of course most doctors these days only want to treat the symptoms and don't always dig too deep if the patient isn't quite assertive. I had no idea it was a sign of kidney failure. Once my ESRD was diagnosed my first neph (one of a few good doctors I've had) said it should have been obvious. But of course he's tuned into renal issues and probably to him EVERYTHING looks like kidney failure.  :P

But anyways...I've been taking Mirapex (pramipexole dihydrochloride) and it really does help with the RLS. For me it's worse when my legs are up such as in an easy chair or in bed. That's when the real cramps start! Since being on dialysis it's gotten a bit worse but the Mirapex and some other muscle relaxer I take at bedtime (sorry I can't think of it's name) help a lot.

 
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smcd23
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The patient, the baby and the donor - October 2010

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« Reply #3 on: June 08, 2013, 10:05:02 PM »

My husband had RLS when he was on PD - when he wasn't meeting adequacy it was definitely worse, as it was when his iron and hemoglobin were low. He found klonopin worked best for RLS. And then one day as suddenly as the RLS appeared, it went away. No rhyme or reason as his labs were consistently inadequate. Good luck, I remember there were nights at 2 am he'd go out walking because he just couldn't sit still.

Oh, have you had any medication changes recently? I know that may have been a factor for him too, but he had so many of the likely causes that it was hard to narrow down the culprit.
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
Poppylicious
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« Reply #4 on: June 14, 2013, 06:02:56 AM »

Blokey was prescribed clonazepam for his RLS (coupled with his insomnia) when he was on haemoD and it worked a treat. 

 ;D
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- wife of kidney recepient (10/2011) -
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Willis
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« Reply #5 on: June 14, 2013, 09:48:37 AM »

...clonazepam...

That's the other drug I take along with Mirapex for RLS. In my post above I couldn't remember what it was called. Here in the US it's considered a "controlled" subsrance so the pharmacist watches very closely how many I take. The Mirapex and Clonazepam together seem to work much better for me than either one alone.

 
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Sugarlump
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10 years on and off dialysis

« Reply #6 on: June 21, 2013, 05:49:01 PM »

The dermatologist has took me off the steroids at last (as they weren't working) so hopefully my insomnia/restless legs/cup of tea at 3am syndrome will start to improve...
 
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Jean
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« Reply #7 on: June 22, 2013, 01:02:21 AM »

I am trying out Gatorade. Drink about 3/4 of a cup before bedtime. Only on my 4th day and so far, so good. I have not had any muscle spasms or cramps at all.
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One day at a time, thats all I can do.
Sugarlump
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10 years on and off dialysis

« Reply #8 on: June 22, 2013, 03:13:56 AM »

That's very interesting
Can I buy that in England or do we have an equivalent?
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Jean
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« Reply #9 on: June 22, 2013, 02:42:01 PM »

Gosh sugarlump, I don't know. I would think, probably under another name, because it is for athletes ( lol). All the supermarkets here carry it and it is very cheap. Like 99cents a quart. It is supposed to replace electrolytes.
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One day at a time, thats all I can do.
Sugarlump
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10 years on and off dialysis

« Reply #10 on: June 22, 2013, 06:37:42 PM »

There are various sports type drinks on the market though I worry slightly in case they are high in potassium? which is something athletes need to replenish but not kidney patients  ::)
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Jean
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« Reply #11 on: June 23, 2013, 01:53:17 AM »

I know. I did read the label and did not see anything like potassium listed.
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One day at a time, thats all I can do.
jeannea
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« Reply #12 on: June 23, 2013, 02:28:54 PM »

Please check your label again. When I look online the labels all have Potassium on the list.
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Jean
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« Reply #13 on: June 24, 2013, 12:41:08 AM »

monopotassium phosphate?
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One day at a time, thats all I can do.
Sugarlump
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10 years on and off dialysis

« Reply #14 on: June 24, 2013, 03:18:12 AM »

The company that makes it should be able to quote you a potassium per 100ml figure.
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Jean
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Posts: 5608


« Reply #15 on: June 24, 2013, 06:00:49 PM »

Okay I will give it a try and get back to you!!
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One day at a time, thats all I can do.
noahvale
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« Reply #16 on: June 24, 2013, 07:01:57 PM »

There are various sports type drinks on the market though I worry slightly in case they are high in potassium? which is something athletes need to replenish but not kidney patients  ::)

An 8 oz. glass of Gatorade Orange has only 30 mg. of potassium.  However, it does have over 100 mg sodium (3 times the amount in an 8 oz. serving of Diet Mountain Dew)

http://www.pepsicobeveragefacts.com/infobyproduct.php?prod_type=1026&prod_size=20&brand_fam_id=1043&brand_id=1002&product=Gatorade+Orange

For comparison, here is a renal diet friendly recipe for Baked Pork Chops (Serving size: 1 pork chop with 1 peach half) - 394 mg. potassium

http://www.davita.com/recipes/beef,-lamb-and-pork/baked-pork-chops/r/5385

and...

Roasted chicken (3 oz. serving) - 190 mg. potassium

http://www.davita.com/recipes/Meats_and_seafood/a/2418http:/www.davita.com/recipes/Meats_and_seafood/r/2418

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"Happiness isn't based on absence of conflict, but in one's ability to cope with it."

03/1978 - Started In-Center Hemo
06/1990 - Cadaver Transplant - UAB
03/2003 - Transplant Rejection
06/2004 - In-Center Hemo
07/2005 - Relisted at UAB
04/2011 - In-Center Sun-Tues-Thurs Nights/Extended Hours
Jean
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« Reply #17 on: June 25, 2013, 01:53:29 AM »

Thank you Noah.
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One day at a time, thats all I can do.
Sugarlump
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10 years on and off dialysis

« Reply #18 on: June 25, 2013, 12:20:21 PM »

Keep me posted Jean on how well it is working with regards restless legs/cramp...
I am going to look for an english equivalent!
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Jean
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Posts: 5608


« Reply #19 on: June 25, 2013, 01:50:23 PM »

I will.
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One day at a time, thats all I can do.
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