Dialysis: scratch that phosphate itch

I recently discovered that it doesn’t matter how long you have been on the BigD, or when you last read about a healthy kidney diet, you can still fall into food traps that can drive you mad, usually in slow motion.  I thought it would be useful to share.

Over the last month in have received a persistent “Could Do Better” after blood tests:  my Phosphate (phosphorus) was 2.9mmol/L, when acceptable is 0.81 to 1.78mmol/L.  Too much phosphate can be toxic.It can cause diarrhoea and calcification (hardening) of organs and soft tissue, can interfere with the body’s ability to use iron, calcium, magnesium, and zinc. But worst of all, it makes you itchy.

About two months ago my calcium level rose alarmingly during a small war between my calcium intake, phosphate binders and Sensipar (Cinacalcet hydrochloride), a parathyroid hormone limiter.  My doctor took me off all calcium (Caltrate and Calcitriol [Rocaltrol]) and Sensipar, and left just one phosphate binder, Fosrenal (Lanthanum carbonate)), to let them sort things out for themselves.

Things seemed to do just that: my levels fell to Acceptable and my doctor went into a watchful waiting period before restarting any drugs.  I’ve got to say, moving from taking a fistful of drugs to just a few is quite liberating.  I know that we are all just a chemical cocktail in a skin bag, but the fewer chemicals added to the cocktail, the better I feel.  Also, it takes me half the time it used to fill up my monthly pill organizer.  So many benefits!

However, never one to rest on my laurels, I decided on some organic self-medication, to get things really humming.  I decided I needed to build up my weight, hopefully by adding some muscle.  So I returned to the gym and dropped my breakfast cereal in favour of a couple of boiled eggs each morning, mainly for their protein.  Also because I like the taste and I like cutting off the top of each egg in the egg cup and scoping out the goodies.

Alas, my good intentions struck rough waters.  Unbeknown to me, egg yolks are high in… phosphate.  Fairly quickly I became Mr Itchy (of Itchy and Scratchy fame, you may have heard of them).  In the early stages I had just a mildly annoying itch, settled with a gentle scratch with my trusty backscratcher.  While it can be really enjoyable to scratch a particularly insistent itch, after a couple of weeks it became a fulltime job.  Itches became maddening – not just my back, but my arms, my legs, my bum (and other regions) – even my neck.  I itched at home, at social occasions, on the phone, at the computer, eating my dinner, in the chair at dialysis (where it is difficult to complete a full body scratch).  Going to bed became a 20-minute jig: lie down, get up and scratch, lie down, get up and scratch, repeat until exhausted or your wife holds you down with a pillow over your face).

About this time I learned that my phosphate level had climbed the French Alps and I needed to review what I was eating.  I thought I knew most of the food rules. I had all the training and the backup paperwork on diet, especially phosphate and potassium.  Only I read most of them over 10 years ago and forgot the basic rule: check it out before you put it in (your mouth).

I found out about the eggs about two weeks ago, so I went back to cereal and monitored my diet closely.  Of course’ you can’t eliminate phosphate from your meals, but you can stay away from or minimise foods with lots in it.  I have always eaten some things that are on the no-no list, but in moderation, and my levels have been fine.

I had a blood test yesterday, and my phosphate level has fallen to 1.9mmol/L – quite a dramatic drop.  I am still itchy, but not crazy itchy, and it is slowly fading.  It seems that the eggs just pushed me over my tolerance level.  From now on I’ll stick to the chicken.

This is yet another reminder that we BigD club members are always on a knife-edge.  Like freedom, for BigD-ers the price of good health is eternal vigilance (and maybe a cup of coffee a day with someone who cares).

6 thoughts on “Dialysis: scratch that phosphate itch

  1. Have you talked to your doc about different phosphate binders? I have tried a variety as I have a phosphate issue, and I find control is best with Renagel. I take about 18-20 of these a day and it works for me. As with all binders though they will vary in effectiveness from person to person. I have tried Lanthanum as this is supposed to the ‘best of the bunch’, but it did not work for me, even at the new higher dose.

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    • I found over time that trying lanthanum, phosex and others, Renagel still gave the best results – it’s down to each person what works. By having a regular regime and taking my Renagel with every meal, snack etc, I keep my phosphate at around 1.3 – If you are lighter framed you would get away with less etc. I have no side effects with Renagel, and they seem to work for me where everything else failed. My calcium sits at around 2.4, so both measures help control my PTH. I’ve been dialysing now (for the second time) for just on 12 years and Renagel has worked the best – I have had high periods of phosphate when using other prescriptions but I am lucky in that my docs are fast to change and willing to try things to achieve a result.

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      • Thanks Steve. I am hoping to mirror your experience! My phosphate is going down slowly, but not yet in normal range, but the Renagel seems to be making a difference. Time will tell all. Greg

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    • Hi Jeff. It would be, but I take 2 per meal, a total of 6 per day, not 18-20. I can’t find a reference to more, but if it there, let me know where and I will update it. Thanks, Greg

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  2. Quite a high proportion of patients in the local dialysis unit are on higher doses of Renagel. I know when I used to dialyse there, and docs did their monthly rounds, you’d hear them prescribing higher doses to control phosphate issues. Certainly it is more common for people here to be taking 3 to 4 per meal, plus additional for snacks, but all depending on tolerance of the individual. (And also dependent on reliability of the patient to take them religiously with every meal!)

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