Phosphorous Binders

[jerseyjezebel]

For the past few days my whole body has been itching like crazy!  The nurse at dialysis said it might be because I'm not taking my binders often enough.  Is this true?  I really don't want to go to the ER.  Has anyone else had experience with this?

Thanks,

Bonnie 

[Deanne]

What was your phosphorus level?

[Ninanna]

When my phosphorous starts to creep up my legs start getting itchy.  I have scratched them until they have bled before.  You should talk to your nephro about your phosphate levels and how many binders you are taking.  For short term relief I have a pair of comfortable yoga pants and it seems to help with the itching. 

[jerseyjezebel]

My phosphorous level was 6.9

[rocker]

Definitely high enough to trigger the itching, in my experience.

[noahvale]

*

[jerseyjezebel]

Great.  I eat pretty much everything that's on the high phosphorous list.  I have no idea what to eat.  A lot of the foods that are low in phosphorous are foods I can't eat because I'm lactose intolerant or diabetic.  I also just don't like a lot of foods.  I have no idea what to do. 

[BattleScars]

I know it's tough. I've also struggled to keep my phosphorus low so you are not alone. What's helped me is making sure I take enough binders. Like one binder for a full meal just isn't enough. I don't know what you are prescribed but be sure to take a binder with all meals and snacks no matter how small. If you eat a larger meal or something that has more phosphorus then take more binders. Avoid soda too. Mostly darker soda has phosphorus but some clear sodas are adding it now too. Also phosphorus in soda absorbs quicker and easier so even though it may seem lower than say most meats it's still really bad for you and most people don't take binders when just drinking fluids. I wish you the best of luck. Try different things and see about getting more binders.   

[jeannea]

It can be really hard to make this drastic change to your diet. One of the things that will help is realising you feel better. You still have rice and noodles. You have lots of vegetables. You still need meat even though it has phosphorus because you truly need protein. Be diligent about the binders. Start reading levels. Maybe for a while write down what you eat and see how much phosphorus you're getting. There are websites to help you calculate. It's ok to get frustrated. Is your dietician helpful? You can do it.

[obsidianom]

Have your CALCIUM checked. High calcium has been found in recent studies to be a MAJOR cause of skin itch. It isnt just phosphorous.
If you are lactose intolerant you can use the diet supplement "lactaid" . it is over the counter. It really works and allows you to eat dairy foods without GI issues. I use it a lot.

[obsidianom]

Association between pruritus and serum concentrations of parathormone, calcium and phosphorus in hemodialysis patients.

Tajbakhsh R, Joshaghani HR, Bayzayi F, Haddad M, Qorbani M.


Source

Department of Nephrology, Golestan University of Medical Sciences, Golestan, Iran. r_tajbakhsh@yahoo.com


Abstract


Chronic renal disorders have a progressive course in most cases, and finally result in end-stage renal disease (ESRD). Hemodialysis (HD) is one of the mainstays in the treatment of these patients. Disturbance in calcium (Ca) and phosphorus (P) metabolism and alteration of serum levels of parathormone (PTH) are observed in these patients. One of the most common cutaneous manifestations in patients on HD is pruritus. The aim of this study is to evaluate the association between pruritus and serum concentrations of Ca, P and PTH in patients with chronic renal disease. This analytic, descriptive, cross-sectional study was performed on 120 patients on HD at the Fifth-Azar Hospital in Gorgan, Iran, in 2010. Information related to the patients, including age, gender, pruritus, time of pruritus and duration on dialysis, was extracted from questionnaires. Serum concentrations of intact PTH, Ca and P were measured. Data were analyzed by the chi-square test and SPSS-16 software. A P-value less than 0.05 was considered statistically significant. Among the 120 study patients, 50% were male and the mean age (±SD) was 49 ± 12.3 years. Sixty percent of the patients had pruritus, of whom 33.3% had PTH levels above the normal range. Among the 40% of the patients who did not have pruritus, 39.6% had PTH levels higher than the normal levels. The mean serum Ca and P levels were 8.44 ± 1.65 mg/dL and 5.48 ± 1.81 mg/dL, respectively. The mean (±SD) Ca-P product was 55.46 ± 47.16 and the mean PTH concentration was 274.34 ± 286.53 pg/mL. No significant association was found between pruritus and age, sex, serum PTH and P levels as well as Ca-P product. However, the association between serum Ca levels and pruritus was significant (P = 0.03). Our study showed that most patients with pruritus had serum Ca levels in the abnormal range (lower or higher), and there was no significant correlation between serum iPTH level and pruritis. Thus, good control of serum Ca levels is important to reduce pruritus in these patients.

[NDXUFan]

My phosphorous level was 6.9

Your phosphorous level is extremely high.  If not gotten under control, you could experience numerous medical complications, worse than just the itching.  Here's a good explanation from DaVita's website:

High levels of phosphorus and bone disease

Because unhealthy kidneys are no longer able to remove phosphorus from the blood and get rid of the excess in urine, high levels of phosphorus (hyperphosphatemia) is a problem for people with stage 4 and 5 kidney disease, especially stage 5 (also known as end stage renal disease or ESRD).

High levels of phosphorus in the blood can cause:
◾bone and heart problems that lead to hospital stays and in some cases death
◾too much PTH to be released, which over time can weaken bones and make them more likely to break and develop renal osteodystrophy
◾low blood calcium, which causes calcium to be taken from the bones
◾calcification or hardening of tissues when phosphorus and calcium form hard deposits in the heart, arteries, joints, skin or lungs that can be painful and lead to serious health problems
◾bone pain
◾itching

Treatments for controlling phosphorus

People with kidney disease are urged to eat foods that are low in phosphorus. This will help keep the blood level of phosphorus in a healthy range.

One goal in treating people with end stage renal disease is to prevent phosphorus in the foods they eat from being absorbed into their bloodstream. To help with this, doctors prescribe medicines called phosphorus binders. In most cases doctors prescribe a binder to be taken along with meals and snacks that have phosphorus. Binders are like sponges that soak up phosphorus. Instead of going into the bloodstream, phosphorus stays in the stomach and then passes through the gastrointestinal system. A low phosphorus diet is necessary for phosphorus binders to work well.

Doctors may prescribe an active form of vitamin D, called calcitriol, to help balance the calcium and phosphorus levels. Active vitamin D cannot be taken if calcium or phosphorus levels are too high because it will increase the risk of phosphorus deposits in soft tissues such as arteries, lungs, eyes and skin.

A new medicine seems to help keep bones healthier in kidney disease patients. Called “calcimimetic” medication, it lowers PTH and calcium, and may even lower phosphorus. But it does not take the place of phosphorus binders. It’s still too early to know, but doctors hope this new drug will help kidney patients have healthier bones and lower the risk of calcifications and heart problems.

Dialysis treatments remove some phosphorus from the blood. It is important that the patient stay on dialysis for their full treatment time for best results. Between dialysis treatments, patients should be careful to limit how much phosphorus they eat.

Exercise can help increase physical strength and, in some case, even strengthen bones. Patients should ask their doctors to recommend an exercise program to help maintain their healthy bones and body.

To keep bone health, doctors will monitor their patients’ lab test results and adjust binders, medicines, supplements and dialysis treatments as necessary. In some cases, surgery to remove part of the parathyroid glands may be recommended to prevent long-term release of PTH. Patients should be sure to let their doctor and dietitian know all of the medicines and supplements they are taking because some of these may contain phosphorus. All of these efforts will help keep phosphorus in a healthy range, so that calcium will not be lost from the bones.

Treatment for high levels of phosphorus may include one or more of the following:
◾reducing the amount of phosphorus you eat
◾taking a medicine called a phosphorus binder
◾taking the active form of vitamin D
◾taking a calcimimetic medicine
◾making changes in dialysis treatment
◾starting an exercise program approved by a doctor
◾getting an operation to remove some of the parathyroid glands

Know your phosphorus and calcium levels

Patients can work with a renal dietitian and their doctors to keep their phosphorus and calcium levels in balance. Regular blood test will show the phosphorus and calcium levels in the blood. According to the “Clinical Practice Guidelines for Bone Metabolism and Disease in Chronic Kidney Disease” put out by the National Kidney Foundation, kidney disease patients in stages 3 and 4 should keep their phosphorus between 2.7 and 4.6 mg/dL. Dialysis patients should keep their phosphorus levels in the 3.0 to 5.5 mg/dL range or as close to the laboratory reference range as possible. The KDOQI goal for calcium is between 8.4 to 10.2 mg/dL.

Here's the link to the full discussion including low phosphorus food tips.  http://www.davita.com/kidney-disease/diet-and-nutrition/diet%20basics/phosphorus-and-chronic-kidney-disease/e/5306

So please take your binders either just before eating or within 5 minutes of starting.  Take a look at the foods you are eating to see if they are high in phosphorus and then cut back.  Talk with your dietitian about coming up with a good meal plan.  Also, do not cut your dialysis treatments short.  Phosphorus is one of the hardest minerals to clean from the blood system.

   

NDXUFan: 
Not trying to mean or combative, most foods have phosphorus.  I am not sure that cutting back is realistic or in the real world.  My calcium has always been low, to the point of taking 2,400 mgs of calcium per day and my calcium was barely normal.  I have had phosphorus in the 8.0 range and I have never had itching, ever.  I am on Nocturnal Home Dialysis, so, therefore, I do not have to take that garbage. Yes, I realize Davita only cares about Davita, I was a home patient there for five years.  According to the Nephrology Department at Indiana University, 5-6 Nocturnal treatments per week, 6 hours per treatment will get rid of phosphorus, so you can eat as you please.  If you disbelieve me, The IU Home Dialysis Clinic is at 1-317-963-6850.  The Nursing staff at IU is very, very well qualified, most RN's have worked at IU in dialysis for 20-35 years.  No, they do not tell you the psychobabble that you are told at Davita or Fresenius.  Yes, I was a patient at Fresenius, people who only care about their own pocketbook, not you or your quality of life.   

[NDXUFan]

For the past few days my whole body has been itching like crazy!  The nurse at dialysis said it might be because I'm not taking my binders often enough.  Is this true?  I really don't want to go to the ER.  Has anyone else had experience with this?

Thanks,

Bonnie 

I have an Aunt Bonnie  

Go to Nocturnal and lose the itching, along with jerks and control freaks. 

[NDXUFan]

It can be really hard to make this drastic change to your diet. One of the things that will help is realising you feel better. You still have rice and noodles. You have lots of vegetables. You still need meat even though it has phosphorus because you truly need protein. Be diligent about the binders. Start reading levels. Maybe for a while write down what you eat and see how much phosphorus you're getting. There are websites to help you calculate. It's ok to get frustrated. Is your dietician helpful? You can do it.

Rice and noodles are terrible for diabetics and veggies cause major gas.  If you cannot perform Nocturnal, make sure the Nephrologist is prescribing enough binders for you.  Yes, I do love veggies and yes, along with my calcium, my potassium is too low, as well. 

[MooseMom]

Great.  I eat pretty much everything that's on the high phosphorous list.  I have no idea what to eat.  A lot of the foods that are low in phosphorous are foods I can't eat because I'm lactose intolerant or diabetic.  I also just don't like a lot of foods.  I have no idea what to do. 

Your neph really should have referred you to a renal dietician.  S/he can create a diet for you that limits phosphorus and potassium but still gives you enough protein to stay healthy.  S/he can also factor in the foods you like/dislike.  My personal opinion is that a renal dietician is particularly important to diabetic kidney patients. My renal dietician was invaluable to me when I was pre-dialysis.

[NDXUFan]

Great.  I eat pretty much everything that's on the high phosphorous list.  I have no idea what to eat.  A lot of the foods that are low in phosphorous are foods I can't eat because I'm lactose intolerant or diabetic.  I also just don't like a lot of foods.  I have no idea what to do. 

Your neph really should have referred you to a renal dietician.  S/he can create a diet for you that limits phosphorus and potassium but still gives you enough protein to stay healthy.  S/he can also factor in the foods you like/dislike.  My personal opinion is that a renal dietician is particularly important to diabetic kidney patients. My renal dietician was invaluable to me when I was pre-dialysis.

NDXUFan:   
I hate to inform you that my potassium is too low, not too high.  I do not take binders because I do not need them because of Nocturnal.  Renal dieticians, in my experience are a bunch of ill formed control freaks and crazy.  I will start listening when they take their own advice, FAT CHANCE....  I have been on home dialysis for seven years and I have yet to meet one of these people at Davita and Fresenius that did not have a few screws loose.  The IU renal dietician has alot of common sense and good advice, not looney tunes advice. 

[Arcticat2000]

I had high phos. levels untill I switched my binder medication to FOSRENOL.  I just chew a couple when I eat or drink (execpt water). I've taken most every binder available and these have worked well for me and I'm on my 10th year of dislysis. I still get to have pizza and even a glass of milk once in a while long as I take those binders.

[cattlekid]

MooseMom, you were very lucky with your renal dietitian.  I had a real Nurse Ratchet as my initial dietitian when I was on in-center.  Her favorite word was "NO".  I finally told her that I had enough of her and that I was no longer interested in speaking with her and I would be obtaining my dietary information elsewhere.  She absolutely refused to work within my lifestyle, which was very on the go as you know I was working full time and trying to juggle that and in center dialysis when I first started. 

I firmly believe that all renal dietitians should spend at least one full month following the renal diet TO THE LETTER.  No cheating.  Bonus points if they do it during a holiday month, I'm thinking from Thanksgiving through Christmas.  Then come back and tell me what to do.  Otherwise, you're just blowing smoke.

I also feel like all dialysis nurses and techs need to spend a week of their initial training having to sit in a dialysis chair with one of their arms tied down for the full length of a treatment three times during that week.  Maybe then some of them will get compassion for their patients drummed into their heads.

Your neph really should have referred you to a renal dietician.  S/he can create a diet for you that limits phosphorus and potassium but still gives you enough protein to stay healthy.  S/he can also factor in the foods you like/dislike.  My personal opinion is that a renal dietician is particularly important to diabetic kidney patients. My renal dietician was invaluable to me when I was pre-dialysis.

[NDXUFan]

I had high phos. levels untill I switched my binder medication to FOSRENOL.  I just chew a couple when I eat or drink (execpt water). I've taken most every binder available and these have worked well for me and I'm on my 10th year of dislysis. I still get to have pizza and even a glass of milk once in a while long as I take those binders.

I am lucky that the friend I live with is trained as a chemist, who can tell me what is in any food or food group.  When I repeated some of the babblings from Davita and Fresenius, my friend and my Dad who is also a chemist said, "They do not know what they are talking about.....  Yes, my Nephrologist agreed, it was a bunch of hooey.

"If you eat phosphorus and your phosphorus is normal, you will regret it." HELLO, PLANET EARTH!!!!!!  Now, you know why I left the jerks and control freaks. 

[cdwbrooklyn]

NUDXFan, can you please explain: "If you eat phosphorus and your phosphorus is normal, you will regret it." Sorry I'm a little slow today and don't get it.  What will you regret? Inquiring mind wants to know.

Thanks.

[NDXUFan]

NUDXFan, can you please explain: "If you eat phosphorus and your phosphorus is normal, you will regret it." Sorry I'm a little slow today and don't get it.  What will you regret? Inquiring mind wants to know.

Thanks.

I am sorry, that is what the dialysis tech told me, that was a bunch of nonsense.

[jerseyjezebel]

Well, I saw my nephrologist on Thursday.  My phosphorus level is now at 4.9.  He doesn't think that was causing the itching.  He thinks it's probably just the dialysis in general that's doing it.  He prescribed a medicine to help with  the itching.  So far it's been working, although I really don't know if it's because my level went down or because of the medicine.  I've been taking my phosphorus binders like crazy lately.  I don't know if I should be taking them while eating snacks, so I take them anyway to be safe.  The directions say to take them 3 times a day, but my dietician  thinks that I should take them more.  The whole thing is confusing.

[Joe]

I take 6 binders with every meal and 2 with snax and I'm finally getting my Phos numbers under control. Only problem is, after downing 6 of those monsters I don't have any room for my meal! 

[jerseyjezebel]

I take 6 binders with every meal and 2 with snax and I'm finally getting my Phos numbers under control. Only problem is, after downing 6 of those monsters I don't have any room for my meal! 

Wow, 6??  I take 2 Renvelas with every meal and 1 with a snack.

[NDXUFan]

I take 6 binders with every meal and 2 with snax and I'm finally getting my Phos numbers under control. Only problem is, after downing 6 of those monsters I don't have any room for my meal! 

Wow, 6??  I take 2 Renvelas with every meal and 1 with a snack.

If you do not have issues with Calcium as I do not or your calcium is too low, you can use Tums.