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Author Topic: cant controll phourphous  (Read 3329 times)
Seaweed
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Great day to be alive and thankful

« on: January 13, 2017, 07:41:14 PM »

4/1/16   5/12/16   6/15/16   7/11/16   8/9/16   9/6/16   10/7/16   11/4/16   12/6/16   1/10/17   
PHOSPHORUS

8.3   7.7   5.3   6.1   6.8   7.5   6.4   7.2   8.3   7.1   

for the life in me ,i can never get my phos levels under controll, my neph had  prescribe 4 tablet of eliphos per meal plus snacks. i was taking about 14 tablet a day , i had so much diarrhea , that i soil my paints and drop 7lbs

so i stop all together and it raise it to 8.3 , now iam down to 7.1  and only takeing 9 tablets ,

I realize there is phosphorous in everything , but getting to this number its like pissing in  a fan   
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Charlie B53
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« Reply #1 on: January 13, 2017, 09:05:44 PM »


One Neph told me while I was in the Hospital that she had a patient that had high Phos that would not come down.  Turned out to be he was eating a high phos candy as a snack using it to curb his dry mouth.  Once that was identified and dropped, so did his numbers,

You may have to start a complete food diary list EVERY little thing that passes your lips.   Only then can you begin to get a better understanding of how much phos you are ingesting.  Sort of the What, when, where.  Then you can decide what changes may be needed.

I don't know much about Binders. I have only used my Renvela.  I imagine there are a number available.  You may want to ask your Dr if or what are the differences in Binders.  If it makes any difference or not.  I don't know.
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Whamo
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« Reply #2 on: January 15, 2017, 03:25:59 PM »

Keeping a food diary, and constantly looking up the phosphorus content of those foods you eat really helps.
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Tío Riñon
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« Reply #3 on: January 25, 2017, 07:16:40 AM »

Check out this presentation that I found a few years ago.  I think it was on this web site.  I shared it with my dietitian and she loved it! 

I have tried many of the options listed as I searched for something that worked for me.  I am finally on Renvela with Tums.  Feel free to inquire if you have questions.

Good luck!

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Charlie B53
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« Reply #4 on: January 25, 2017, 03:00:10 PM »


WOW, I had no idea there were that many different Binders.
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Michael Murphy
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« Reply #5 on: January 25, 2017, 04:20:39 PM »

I learned something today from a nurse who is also a patient in the clinic I go to.  The blood work is not accurate for phosphorus and potassium because they hold all the tubes till the last patients are put on around 6 PM.  According to her the time spent waiting around skews the readings higher.  Next month when I see my nephrologist I am going to ask to have my blood tested at the medical group they have a in house lab.  When I get the results I will post them.
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OneForTheBirds
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« Reply #6 on: January 25, 2017, 05:04:05 PM »

I am eating very little phosphorus these days

No beans, no seeds, no bran, no chocolate, no nuts, no dairy except some cream cheese.

My only fruits are pineapple, blueberries, apples.

Napa cabbage is my main vegetable.  Onions, cauliflower...

I'm really pushing the egg whites for protein (I make French toast with whites only!)

No colas of course.

We'll see by how much my phosphorus falls - it's not humanly possible to eat less phosphorus without sacrificing nutrition!

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apetty
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« Reply #7 on: February 05, 2017, 06:09:04 PM »

Those numbers look almost exactly like my own... medications you take also have an undisclosed amount of phosporus in them.
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Amanda Petty
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« Reply #8 on: February 06, 2017, 02:59:11 AM »


This may be a stupid question.  Do ALL binders cause diarrhea in some people?

I am wondering if the OP should ask his Neph to change binders to another perhaps more effective and less likely to cause the side effect of diarrhea.
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smartcookie
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LMSW

« Reply #9 on: February 06, 2017, 06:37:58 AM »

From my understanding, most binders can cause some sort of stomach problems, either diarrhea or constipation.  Dialysis can, too.  It is hard to say sometimes if it is the binder, dialysis or a mixture of both and other medications.  If you have tried a food diary and upping your meds to highest amount, you could always ask about getting a parathyroidectomy.  Removing the parathyroid helps decrease phosphorus levels.  Generally, though, you need to take a calcium supplement after surgery. 
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
Whamo
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« Reply #10 on: March 22, 2017, 06:58:27 AM »

Don't complain about the runs.  Constipation is ten times worse.
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Charlie B53
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« Reply #11 on: March 23, 2017, 03:24:10 AM »


Inmy 29's I used to have near constant constipation. Actually had an anal fissure due to the compaction causing me to 'stretch' beyond capacity, tearing the last inch of the colon/anus opening.  Old Dr at the Seattle VA Hospital told me it was too much white flour. Hamburgers, turning the stool into near concrete. Since then I have rarely ever eaten white bread in most any form. And limit pasta in my diet.  It's difficult as so much food today is made with large amounts of white flour.  Vegetables can really make a difference.  Not necessarily needing an ALL veggie diet, but increasing the amount of fresh or frozen veggies in your daily diet can made a huge difference.

Even taking a lot of binders now that I am on Hemo, I still do not have any problem.  NO constipation, no diarrhea.  May be that I am just one of the fortunate ones.
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Michelle2016
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« Reply #12 on: March 23, 2017, 12:50:37 PM »

Have you tried Probiotics?
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Hazmat35
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« Reply #13 on: March 24, 2017, 06:47:59 AM »

4/1/16   5/12/16   6/15/16   7/11/16   8/9/16   9/6/16   10/7/16   11/4/16   12/6/16   1/10/17   
PHOSPHORUS

8.3   7.7   5.3   6.1   6.8   7.5   6.4   7.2   8.3   7.1   

for the life in me ,i can never get my phos levels under controll, my neph had  prescribe 4 tablet of eliphos per meal plus snacks. i was taking about 14 tablet a day , i had so much diarrhea , that i soil my paints and drop 7lbs

so i stop all together and it raise it to 8.3 , now iam down to 7.1  and only taking 9 tablets ,

I realize there is phosphorous in everything , but getting to this number its like pissing in  a fan

WOW...those are some awfully high numbers.  Mine is generally around 4.9 - 5.2 (not to brag).....but it really comes down to what you eat; and how much you eat of it....!!  Everything...almost everything has Phos in it somehow someway.  You just have to look at the ingredients if its in a box; lay off the beans; lay off the chocolate; lots of veggies are high in Phos too...

I have tried several different meds; and right now; I'm under control and I take [4] Renvella Tabs w/ every meal; and [2] with snacks; I take up to [16] tabs per day!  And with the Renvella Patient assistant program they have; it only cost me $5.00 per month. 

Good luck...but look up and make yourself a list of High phos foods.....your Dietitian should be able to have something available for you already. 
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smartcookie
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LMSW

« Reply #14 on: March 24, 2017, 12:13:01 PM »

Our dietician and medical director are huge fans of Auryxia.  Most binders cause constipation, this once causes loose stools (labeled as diarrhea, but the rep said that it is more just loose stool).  Renvela has a high pill burden.  Everyone is started on Auryxia at 2 tabs with meals and one with snacks.  Generally, that does the trick.  I would ask your dietician or doctor about it. 
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
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