Binders and diet are not keeping my phosphoros levels down.

[baristacup]

My phosphoros level goes up every month. It's now 9. Several months ago it was 3.5. I'm pretty careful with my diet and I take Renvela powder after each meal and half a packet after snacks. I wonder if other people have the same problem. I have GI problems with Crohns disease and had my colon removed and 3' of small intestines about 14 yrs ago. However, Crohns is currently in remission. My food is digested fast. Usually 6 hours but sometimes 1 hour for a meal.
I'm now going to try 2 packets of powder per meal. One problem is cost. 90 packets cost $495.00 and that's with insurance. It will now increase to almost a $1000.00 a month for binders. The good news is I qualified for help and it's now free. What a mess. My question is should I quit pursuing bring down my phosphoros numbers if trying is all in vain?
Bob Emrick

[stumpr54]

Hello baristacup,

It sounds like your digestive system is not helping you out, and chances are the mechanism by which Renvela works is being "short circuited" by the shortening of your intestinal tract. More Renvela might be better - it's an experiment.

I tend toward the opposite problem. After roughly 6 months on HHD, my phosphorus levels fell below 3.0 (the minimum) and my dietician told me to start eating foods rich in phosphorus. I stopped taking my Calcium Acetate (generic of Phoslo 667) binders as well. The culprit may have been too strict an adherence to "the kidney diet", e.g. no dairy, limited meat, etc. After several months, the levels did come back to the 3.0 to 5.5 range and in fact I over shot and ended up back on the binders, which I now take twice a day with my noon and evening meals.

I discoverd that I can "game" my monthly labs with loading my pre-lab draw treatment plan with more hemodialysis via nocturnal treatments. The longer slower treatment does pull phosphorus and potassium in a manner that faster treatments do not. If I run at least two nocturnal HHD treatments the days immediately leading up to my lab draw day, I can pull both values into the low to mid 3.0's.

Unfortunately, my Albumin comes along for the ride and will dip to 3.9 - just under the acceptable level of 4.0. I don't feel any differently, but my HHD clinic dietician has a bird because it hammers her patient performance numbers. No amount of Quest (20g of protein) bars ingested seem to lift that Albumin figure as my nocturnal HHD treatments produce KdT/V values (5X weekly treatments) in the mid to upper 2.0's and occassionally into the 3.0's against a minumum clearance of 2.0.

I suspect you are treating 3X weekly in-center and cannot string treatments together, nor treat nocturnally. These unfortunately are some of the limitations of in-center hemodialysis. I've only been an HHD patient and am thankful for the treatment flexibility that it affords my care partner/spouse and I.

[joebrown70]

Try Calcium Acetate

My phosphoros level goes up every month. It's now 9. Several months ago it was 3.5. I'm pretty careful with my diet and I take Renvela powder after each meal and half a packet after snacks. I wonder if other people have the same problem. I have GI problems with Crohns disease and had my colon removed and 3' of small intestines about 14 yrs ago. However, Crohns is currently in remission. My food is digested fast. Usually 6 hours but sometimes 1 hour for a meal.
I'm now going to try 2 packets of powder per meal. One problem is cost. 90 packets cost $495.00 and that's with insurance. It will now increase to almost a $1000.00 a month for binders. The good news is I qualified for help and it's now free. What a mess. My question is should I quit pursuing bring down my phosphoros numbers if trying is all in vain?
Bob Emrick

I have the same problem but don't give up! The consequences are terrible ask your dietitian.

[DrtyDave]

I am just like you. I have had crohns disease for 45 years and have had numerous small bowel resections but have been in remission for the last 20 years.
I to could not afford the binders phoslo. I discussed this with my Doctor and she told me to take Tums. I googled it up on the internet and saw it was true.
I now chew on tums during and after a meal and my phosphorus count went from 8.5 to 3.5. you still have to watch what you eat or it will rise up quickly.
Hope this helps.

[Dizzydoxi]

Hope

I just started tums. Oct test of phosphorus was 7.5 hope this will help lower it. Hope tums help you.

[Shanise3342]

Is some of your favorite foods, cheese, 2% milk, nuts, certain beans, chocolate, process foods, if so this might be a problem. Also ask your nutr.to give you sample of Nepro.

[Jshukert]

Try the app "chronometer" to help regulate your phosphorus levels.

[Linette]

It is my understanding that you are supposed to take the binders with the meal. My mother was instructed to begin eating and half way through take the binder and then continue eating. I also find that this Renvela is very expensive. Too much! I did not know about the powder, is that something you request from the pharmacy? My mother takes gigantic pills.

[Linette]

My mother has begun experiencing cramps towards the end of her dialysis treatment. Can anyone help me understand what is going on and how to prevent. The Center decreases her time when the cramps begin, however I read somewhere that this prevents all the toxins from being cleaned from the blood and can build up over time. Any advice or guidance you can provide is helpful. Thanks

[Digil72]

I take Phoslyra a liquid form of the phosphorous binder and find if I take it regularly with my meals and snacks
it keeps my phosphorous readings within the normal range. If I don't take it regularly my #s jump but nothing as high as some of you have described. a 90 day supply of Phoslyra cost me $103 my last refill. This was thru my mail order supply from Blue Cross Blue Shield insurance. I am under the Federal plan. I was getting it through DaVita RX but when I went to get a refill in May the cost had jumped to $200+. I checked around and found that my BC/BS was the cheapest. I am Medicare eligible but just have Parts A & B.
Hope this helps. I had never heard of the powdered form. Yes, the liquid tastes awful so taking it in the middle of the meal does help. Also, I usually swallow some water after taking a dose in order to get rid of the taste. And Yes, the pills are huge and I cannot swallow them.