phosphate binders

[jadey]

My eating habits are quite sporadic. I tend to have many "meals" a day.. due to multiple snacking/coffee breaks. My nurse and dietician told me to just take 3 apocals per meal. I asked them what if I have a coffee/small snack inbetween and they said I don't need binders for that. Reading this board has made me think otherwise..

I'm pretty sure it would be best that I take a binder every time I put something in my mouth. My phos levels have been high and still is pretty high. They keep thinking it's my diet..but it's not! I don't eat anything dairy..really..I'm lactose intolerant anyway.. and I hate whole wheat

Can you take too many binders?? I've been taking 1 binder per coffee because I use lots of half and half.

I've been asking them over and over about the mechanism of apo-cal.. how long is it effective for.. but NO ONE can give me the answer!!

Any ideas??

[Joe]

jadey, my dietitian told me that I couldn't overdose on binders. I typically take two with breakfast, two with lunch and 4 at dinner. In addition, if I have a snack in the morning or afternoon, I toss one in then too. I've just gone to this schedule and we'll see how my labs come out on the 12th. More to come...

[lmunchkin]

Not familiar with apa-cal. But J takes 2 phoslo & 2 Renevella with 3 meals. He also takes a Renvella with snacks. His last labs showed Phos at 4.7.  He use to be real high too.

lmunchkin
 

[amanda100wilson]

If it is a calcium based binder and given the name, it sounds as if it is, you can take too many.  If the phosphate doesn't bind with all of the binder you can elevate your calcium.  I tend to guage mine by whether it is a high phosphate snack or not.

[Willis]

If it is a calcium based binder and given the name, it sounds as if it is, you can take too many.  If the phosphate doesn't bind with all of the binder you can elevate your calcium.  I tend to guage mine by whether it is a high phosphate snack or not.

 

[Annig83]

What else are you eating?  Are you aware of all foods that have high phosphorus?... I admit that sometimes I ignore my dieticians' advisements and eat what I want...I am a diary-a-holic!  My phosphorus has been stable and I take 6 pills of Renagel a day.  I have a link on foods and high levels of phosphorus listed below if you want to look?  If your levels continue to be high I would suggest talking to your Nephrologist again and let them know what you've been eating daily... maybe make a food journal to show them that you've been sticking to a low-phosphorus diet??  It couldn't hurt.  Let us know what's up!   Good luck.

[jadey]

my usual foods at home

egg
peanut butter (1 tsp)
grilled chicken breast
steak
white rice
noodles
soup (usually made with pork bones or chicken bones)
I sometimes eat pork
tofu
white bread

For veggies I usually have: chinese brocolli, lettuce, basically all chinese vegetables... I don't eat that much veggies tbh..

Fruits I have oranges, bananas, grapes

[Annig83]

That's a pretty good list...
Pork is moderately high in phosphorus, and depending on how much you eat (with soup, bacon, or anyother pork product), you may be spiking...especially if you eat before a blood draw. My dietician said tofu is alright in moderation through out the week.  I've been having an aversion to meat lately so I eat more vegetarian than not.  I know this is on phosphorus, but is your potassium high too?  Oranges and bananas have higher levels of it... I assume you don't eat an entire bunch of bananas in one day 
BTW veggies are great!! They have little to no phosphorus in them at all!!!

[jadey]

Since I am on PD, they want me to eat more potassium.

I forgot to add that I drink coffee regularly..usually 1-2 cups a day with half and half (mmm)

My PD tends to take out my albumin as well so they want me to eat more protein..which I find so hard. meat is so difficult to eat when it's not salted

[Restorer]

It's probably better to put some salt on the meat than not eat it at all, if your protein is low, especially if you're on PD and you don't have such strict fluid restrictions.

I take 4 Renvela with each meal, but I modulate it based on how much I'm eating, how much phosphorus I estimate what I'm eating has, and so on. Based on things I've read (including something Zach posted a while ago), I estimate that one Renvela binds about 100 mg of phosphorus. Apo-cal doesn't bind quite as much, but as you adjust things you can learn what you need to do.

If you have a small snack, maybe you can take one binder, and maybe one with the coffee if you use more than, say, 2 ounces of half and half (1 oz if you're using fat-free "half and half"). And so on - learn how much phosphorus the food you eat have in relation to each other, and adjust your binders accordingly.

[janetetal]

I'm a newbie to all of this. I do have high potassium so bananas and oranges are out. Is low K a function of dialysis? thanks

Take care

Deb

[amanda100wilson]

Janetal, not sure what you meanby your question.  Potassium is normally regulated by the kidneys, so when they are damaged, this regulation is lost.  Depending on your underlying disease and also how much residual renal function you have left determines how much is cleared.  Some damaged kidneys will even leak potassium, but generally speaking, potassium is retained.  PD clears it fairly efficiently, and you may not have to restrict potassium-rich foods so rigorously, or not at all, particularly if you still have residual renal function.  NxStage also tends to clear it better than three times a week dialysis, because of the frequency of doing it also because of the characteristics of the dialysate used.  Use your lab. Results to determine what you can get away with and also speak to your dietician to get her recommendations.  Hopefully yourdietician will tailor it to your needs and not give you generic recommendations.

[janetetal]

Thanks for the info. The dietician hasn't been helpful yet once I told her I needed low K and low carb for diabetes. She didn't seem to know much about the low k diet, just handed me the list off the internet and let it go at that.

Take care.

Deb

[Rain]

Janetetal,

Find a dietitian that is familiar with low K diets.  Find a renal dietitian ask at your nephrology client for a renal dietitian.

[Hazmat35]

My Neph prescribed me 240 tablets of Renvela for a month.  So, that is 2 tablets 4 times per day. 

I 2 pills everytime I eat; no matter what it is, even if it is small.  I found that I was "snacking" once or twice a day and was running out of pills at the end of the month. 

So my Neph changed the Rx and now I get 360 pills per month and usually have extras left over.  My Phosphorus the last two months has dropped from 5.5 to 3.4!!!!!!!!!

[sullidog]

I used to follow you don't need binders for snacks but I just recently started taking them do to hi fos and it really dropped it.

[Whamo]

I've replaced binders with TUMS or store brand TUMS.  My labs have all been good since I switched, and they cost less than binders.  They also taste a lot better.

[jessicalynn42]

Yea i dont like them much. The problem i have is figuring out how many for what food. My phosphate had been ove 7 for a very long time it never been lower. Last month they started me a a drug called sensipar my level dropped to 4.9. They were  but i also now consider my binders and another food group like grain and fruits. But thy draw  on tuesday next week and we will see where it ends up.

[Lillupie]

I've replaced binders with TUMS or store brand TUMS.  My labs have all been good since I switched, and they cost less than binders.  They also taste a lot better.

I havent had Tums in 13 years. And every month it is the same thing. The nurses make me want to punch them out. HOW MANY TIMES do I have to tell them NO I DO NOT Take tums!! Grr. My calcium runs high about 10.0-10.2. My phos is usually below 5.5.

Every month they are asking me if I take tums because my calcium is high!

grr.
Lisa

[Sam.maidment2012]

Looking at some peoples phosphate levels, I think myself lucky (mines at 2.7) but my dietitian still badgering me to take binders! I have such trouble at remembering, I take three for breakfast three for lunch three for dinner(obviously when i remember), but i still cant resist the crisps and choc, they are my MASSIVE weakness especially the crisps. I have started on those monster Ripper drinks too! I don't know the health or non benefits, I have been having atleast 4 a week, but only tend to have them on dialysis days.   

Anybody else struggle taking these binders?

[thegrammalady]

Yea i dint like them much. The problem i have is figuring out how many for what food. My phosphate had been Ive 7 for a very long time it never been lower. Last month they started me a a drug called sensipar my level dropped to 4.9. They were  but i also now consider my binders and another food group like grain and fruits. But thy draw  on tuesday next week and we will see where it ends up.

sensipar is for high pth which has to do with the parathyroid and too much calcium in the system. using tums for a phos binder can raise calcium levels.