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Author Topic: Ahhh the itchiness!!  (Read 5288 times)
jadey
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« on: May 09, 2012, 09:22:12 PM »

I always knew that one of the horrid symptoms of CKD is having itchy skin. I've finally experienced it today since I got diagnosed! :( maybe it was the high phosphate dinner I had last night?

The itch has been terrible all day :( anyone else experience this?

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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
sandyHD
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« Reply #1 on: May 09, 2012, 09:28:18 PM »

HI there! Yes it must be the high-phospate you ate.  I remember having the itch right after i had a spoonful of ice cream. yes only a spoonful and i suffered like there's no tomorrow.

Are you taking some phosphate binders? do ask your doctor about it. It should be taken while you are eating phosphorous rich food for maximum efficiency.

Also, it would greatly help if you avoid high phosphorous foods. but make sure to eat the right amount of protein too.. Eggwhites are a good source of protein minus the phosphorous.

Meanwhile, ask your doctor too if you can take some antihistamine for the itch!
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SandyGirl Age 26 on dialysis for almost 3 years.
Single. Happy. No regrets.
Undecided to get a transplant or not.
smcd23
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« Reply #2 on: May 09, 2012, 09:34:13 PM »

My SO has the itch almost constantly. And his skin is always dry. His phosphorus is always high too. I'd place bets on it being due to elevated phosphorus. Do you take binders?
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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?
sandyHD
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« Reply #3 on: May 09, 2012, 09:37:31 PM »

Yes I do. I take TUMS but there must be other binders available in your country.

Try to have him eat less red meat, rather choose white meat like fish or chicken. Eggwhites are the best source of protein! :D i eat at least 2 eggwhites a day.

Apart from phosphate overload, dry skin also contributes to the itchiness so make him slather on moisturizers often too.
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SandyGirl Age 26 on dialysis for almost 3 years.
Single. Happy. No regrets.
Undecided to get a transplant or not.
jadey
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« Reply #4 on: May 09, 2012, 10:02:49 PM »

Yes I took binders with my meals--3 apocals (500mg ea). I didn't think it would be too bad but I had a formal event last night where every dish was high phosphorous... roast beef, veggie lasagna with lots of mushrooms, caesar salad, ice cream sandwiches for dessert

I only had a little bit of everything... which resulted in this :(

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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
galvo
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« Reply #5 on: May 09, 2012, 10:07:15 PM »

Just part of the fun, jadey. My itchies went away when I got my phos and potassium under control, as will yours.
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Galvo
sandyHD
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« Reply #6 on: May 09, 2012, 10:08:14 PM »

With my med, I get to chew 2 tabs whenever I eat more than enough meat.

Phosphorous will be taken out after a few dialysis.. its one of the minerals that don't easily get flushed out after 1 HD like potassium.

Try rubbing itchy parts with a cold compress to relieve you of the itch and avoid scratching the itchy area.
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SandyGirl Age 26 on dialysis for almost 3 years.
Single. Happy. No regrets.
Undecided to get a transplant or not.
ChrisEtc
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« Reply #7 on: May 10, 2012, 04:26:45 PM »

It's a nightmare.  I had eaten 2 bowls of cereal like three days in a row and all that milk killed me.  I actually when to see the doctor and he prescribed me some cream not thinking it was the phosphorous, hehe. 
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sandyHD
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« Reply #8 on: May 10, 2012, 06:49:18 PM »

Hi Chris!

Yeah you should mind the milk or any dairy product for that matter. And also soda, they contain high phosphorous too.

It is best that you search the net as to what type of food to eat and not eat, as well as their portions, and understand why high potassium, sodium, and phosphorous should be avoided.. 

:secret;

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SandyGirl Age 26 on dialysis for almost 3 years.
Single. Happy. No regrets.
Undecided to get a transplant or not.
ChrisEtc
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« Reply #9 on: May 10, 2012, 08:52:43 PM »

Hi Chris!

Yeah you should mind the milk or any dairy product for that matter. And also soda, they contain high phosphorous too.

It is best that you search the net as to what type of food to eat and not eat, as well as their portions, and understand why high potassium, sodium, and phosphorous should be avoided.. 

:secret;


Yeah, I'm not a good patient.  heheheh
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jadey
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« Reply #10 on: May 11, 2012, 10:27:15 AM »

I'm getting these little bumps on my arms from all the scratching :( will they go away??

when will this itch stop? I've already behaved myself very well for the past 2 days by keeping to low phos foods
Logged

Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
ChrisEtc
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Posts: 67

« Reply #11 on: May 11, 2012, 04:19:05 PM »

I'm getting these little bumps on my arms from all the scratching :( will they go away??

when will this itch stop? I've already behaved myself very well for the past 2 days by keeping to low phos foods

Mine lasted about 4 days when I had it really badly.  Sucks!
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smcd23
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« Reply #12 on: May 11, 2012, 04:19:48 PM »

I have no idea how long the itch lasts if it was from an isolated incident. My SO itched and has dry skin so we got him a gritty body exfoliating scrub from Clinique and that helps him a lot. Pulls off all the dry skin so he's not as itchy.
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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?
RightSide
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« Reply #13 on: May 13, 2012, 04:45:30 PM »

I had terrible itching, to the point that I couldn't sleep at all.  It was like my skin was just getting tickled with needles, first this part of my skin and then another. Even though my phosphorus was under good control.

In my case, the itching was due to high parathyroid hormone (PTH) level.  It took more than 6 months to get that under good control, for reasons that are too involved to go into here.  That was 6 months of hell.  But once my PTH dropped below 400 and stayed below 400, the itching mostly disappeared.
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Whamo
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« Reply #14 on: June 05, 2012, 04:25:07 AM »

I get the itchies around my catheter.  I think it's the tape.  I hate that!
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Grumpy-1
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« Reply #15 on: June 05, 2012, 04:39:47 AM »

I'm itchy all the time as well.  My legs have been so bad at times that I've drawn blood from scratching.  Both my PTH and phosphorous are high right now.  Grumpy

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Make me the person my dog thinks I am
noahvale
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« Reply #16 on: June 05, 2012, 11:27:38 AM »

^

« Last Edit: September 17, 2015, 07:49:52 AM by noahvale » Logged
Cordelia
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« Reply #17 on: June 05, 2012, 11:40:12 AM »

I haven' experienced total body inch since I started dialysis. My phosphorus was so bad I itched and itched so bad I clawed myself that I bled. I never, ever want to feel that ever again.

Sometimes my fistula arm gets itchy due to the tape, that !@#~ tape makes my arm itch.

Also, Sometimes the bottom of my feet get itchy and that's annoying.  I don't know how to explain that...all I know is its very irritating.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Riverwhispering
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« Reply #18 on: June 09, 2012, 03:31:57 PM »

Do any of you pay attention to how many mg of phosphorous you eat per day?  What has your renal dietitian recommended as a limit per day?  I was told to limit mine to 1,000 mg a day and my phosphorous is in the "normal" level and I haven't had the itching and I don't take binders.
   
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It's only one step from the Jungle to the Zoo
Cordelia
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« Reply #19 on: June 09, 2012, 03:46:12 PM »

No.   Just about everything we put in our mouths has phosphorus and unfortunately, there is no law for the food companies to have it written on the food labels as to how much phosphorus is in all the foods.    So how do you measure when the food companies don't do that?
« Last Edit: June 09, 2012, 03:47:15 PM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Riverwhispering
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« Reply #20 on: June 09, 2012, 04:58:03 PM »

I look up the foods on http://nutritiondata.self.com/  I haven't heard anyone else ever say they were told by their renal dietitian to limit their phosphorous to a certain number of mg a day.  I guess I am lucky because I have a guide to go by.
 
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It's only one step from the Jungle to the Zoo
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