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Sugarlump
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« on: June 07, 2013, 12:03:44 PM » |
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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!  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  |
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PatDowns
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Gender: 
Posts: 232
Celebrating 60th B'Day. 12/26/15
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« Reply #1 on: June 07, 2013, 03:42:18 PM » |
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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.abstractAnother study showed that Biotin deficiency could play a role as well: http://www.docguide.com/restless-legs-syndrome-could-indicate-biotin-deficiencies-patients-dialysisSome 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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Frank Moiger aka (previously) NoahVale and now PatDowns, the name originally chosen by a good dialysis mate who died in 12/2013. I started in center hemodialysis as a 22 y.o. in 1978. Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant. Former Associate Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6. Self-employed since 1993.
Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
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Willis
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« Reply #2 on: June 07, 2013, 05:50:16 PM » |
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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.  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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« Reply #3 on: June 08, 2013, 10:05:02 PM » |
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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?
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Poppylicious
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« Reply #4 on: June 14, 2013, 06:02:56 AM » |
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Blokey was prescribed clonazepam for his RLS (coupled with his insomnia) when he was on haemoD and it worked a treat.  |
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Willis
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« Reply #5 on: June 14, 2013, 09:48:37 AM » |
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...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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« Reply #6 on: June 21, 2013, 05:49:01 PM » |
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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 |
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Jean
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« Reply #7 on: June 22, 2013, 01:02:21 AM » |
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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.
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Sugarlump
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« Reply #8 on: June 22, 2013, 03:13:56 AM » |
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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 |
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Jean
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« Reply #9 on: June 22, 2013, 02:42:01 PM » |
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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.
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Sugarlump
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« Reply #10 on: June 22, 2013, 06:37:42 PM » |
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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 |
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Jean
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« Reply #11 on: June 23, 2013, 01:53:17 AM » |
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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.
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jeannea
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« Reply #12 on: June 23, 2013, 02:28:54 PM » |
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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 » |
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monopotassium phosphate?
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One day at a time, thats all I can do.
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Sugarlump
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« Reply #14 on: June 24, 2013, 03:18:12 AM » |
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The company that makes it should be able to quote you a potassium per 100ml figure.
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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 |
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Jean
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« Reply #15 on: June 24, 2013, 06:00:49 PM » |
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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.
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noahvale
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« Reply #16 on: June 24, 2013, 07:01:57 PM » |
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^
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« Last Edit: September 21, 2015, 03:15:14 PM by noahvale »
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Jean
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« Reply #17 on: June 25, 2013, 01:53:29 AM » |
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Thank you Noah.
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One day at a time, thats all I can do.
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Sugarlump
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« Reply #18 on: June 25, 2013, 12:20:21 PM » |
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Keep me posted Jean on how well it is working with regards restless legs/cramp...
I am going to look for an english 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 |
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Jean
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« Reply #19 on: June 25, 2013, 01:50:23 PM » |
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I will.
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One day at a time, thats all I can do.
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