Phosphorous Binders - Cheap and life-saving

I've been a Stage 5 ESRD patient on dialysis for 4+ years. One thing I have learned about this disease is how important it is to survival to keep your phosphorous levels down! I need to eat a LOT to keep my albumin and weight up, so I am constantly fighting high phosphorous, even though I eat a relatively low-Ph diet. 

My doctor has me on Phoslo (Calcium Acetate), but even though I take the pills exactly as prescribed, I am still getting high Ph levels because I am not taking enough. The trouble with Calcium-based binders (Phslo or TUMS/Calcium Carbonate) is that you are limited to 1.5g of elemental calcium exposure per day ( a total of about 12 Phoslo, 12 TUMS 1000, or 12 or any combination). After that, or if you eat too much calcium in your diet, and your calcium levels will go up (which is just as bad as high phosphorous).

My doctor just kept telling me to take more and more Phoslo, until I had over-run my prescription, was way over my daily exposure to calcium, and started getting more screwed up with each lab draw. I then realized that Phoslo is more than $200 for a month's supply! I thought something must be possible, so I started to research.

Turns out that almost all of the phosphate binders prescribed today are, in fact, chemicals that can be purchased over the counter. I encourange you do do your own research, but this is what I found:

1) Calcium Carbonate is the stuff TUMS is made of. It is pure limestone, and available in powder with no colors, flavors, or additives for as little as $5 a pound; a single TUMS extra-strength contains 1 gram of this substance.

2) Calcium Acetate is the stuff Phoslo is made of. It is also available for about $10 for a month's supply. A single pill is 667mg and usual prescription is three pills at each meal;

3) Magnesium Carbonate is another binder available over the counter in its chemical form. 475mg/day is what I found to be the maximum dose, and you have to watch for high magnesium in your blood. The studies I read suggest that slightly high magnesium of 3.2 is good for you, but you need to be careful not to get out of hand. A month's supply of this chemical is also around $10;

4) Nicotinic Acid (Vitamin B3 or Niacin) has been shown to reduce Ph levels and add other potentially beneficials like LDL cholesterol and cardio benefits at doses between 1 and 2 grams/day. This vitamin is available in bulk powder form for about $8 a month. It is also great in that it needs to be taken 1/2 times a day, and will block Ph for hours after taken - so it protects you during snacks or if you forgot another binder. Also available for about $10 a month; 1 gram a day will cause flushing and possibly itching until your body tolerates - a good idea to work up to your final dose slowly and (if possible) take an 80 mg aspirin 1 hour before your vitamin. 

5) Ferric Citrate - an iron-based binder also available for a few dollars a month as a chemical instead of hundreds as a prescription. Usual starting dose is 1 gram 3x a day with meals. Potential benefits include stabilized hemoglobin, reduced need for IV iron and EPO. Side effects include black poop and stomach upset. 

Two other OTC chemicals also prescribed for Ph binding include Aluminum Hydroxide and Lanthanam Carbonate. I won't discuss those here but include them for you to conduct your own research into if your situation warrants.

In my situation, I did a food diary for a week and calculated that I would need 17 Phoslo a day to bind my Ph intake. Obviously, that wouldn't work (and it wasn't), and I couldn't turn to TUMS to make up the difference, because it also contained calcium. My insurance wouldn't pay for more than one binder, so I did my research.

Working with my doctor, I now have a 5-chemical Ph binding regimen that I compound myself. For me:

1) 450mg Magnesium Carbonate

2) 1000mg Calcium Acetate

3) 1200mg Calcium Carbonate

4) 1000mg Nicotinic Acid

5) 2500mg Ferric Citrate

is compounded and taken as 1 dose of niacin in the morning and equal doses of the rest at meals each day. I get all the benefits of combination therapy, my Ph levels are within range for the first time ever, and I do it all for just a few dollars a month.

Of course, this is not for everybody. I take extreme interest in my disease, have educated myself on these therapies, and have acquired the knowledge, materials, and equipment necessary to supplement myself. I make doses daily to ensure correct weights, and only make changes based on discussions with my doctor. Luckily, my doctor has the confidence in me to discuss how these supplements might be beneficial. 

If you have perpetual problems keeping your Ph low, or if you cannot afford the prices of prescription binders - AND if you take the time to educate yourself and buy/use the proper equipment, there are affordable options out there for you. I certainly don't recommend everyone start supplementing themselves without medical consult, but for those that will take the time to learn and understand, there are potential solutions out there to help you keep your phosphorous levels low and extend both quality and length of life.

ALWAYS talk to your doctor. Even if he/she disagrees, NEVER supplement yourself without informing them of exactly what you are doing! This isn't easy or fun, but it's a potential pathway to life for those (like me) who have issues with binders.  

3 likes, 2 replies