Question about binders?!

[Angiepkd]

I recently had a "critical" lab result for phosphorus.  My level was 11.4.  Up until this, I had been controlling my levels without needing binders.  Not sure what happened, but my neph decided to prescribe me Renvela.  The directions say to take 1 tablet 3 times a day with meals.  My problem is, I am more of a grazer than a 3 normal meal person.  If I take 1 pill with my morning protein bar, how long does it work?  It is not uncommon for me to snack throughout the day, without having a normal breakfast and lunch.  I do eat a regular meal for dinner, but usually have a snack before I go to bed.  I have searched the Renvela documents online and can't find any information about how long it works after you take it.  Anyone have crazy eating habits like me lol?  How do you take your binders?  I am going to ask the doc on Tuesday, but sometimes you guys have more experience than the so-called experts!  Thanks for any help you may have for me!

[UkrainianTracksuit]

Hi Angiepkd,

We're currently dealing with my grandfather's high phosphorus issues.  He has odd eating habits too: big breakfast, no lunch, snacks, some day no snacks, dinner...  His issue was that he was not taking his Renagel tablets with each "feeding" since he did not feel they were important.    

Anyways, I don't know how long they last in the system.  I do know they get to work quickly though in the body.  We were advised that one shouldn't wait more than 20 minutes after eating to have a blocker.  In that case, it couldn't perform its use.  I think if they get to work that quickly perhaps they wouldn't last as long? 


Some advice we were given for a "grazer" is to eat the foods with the highest phosphorus (alright, not high per say but "higher" in your renal friendly choices) in your meals when you plan to take your binders.  And then, for the snacks/grazing, stick to lowest possible phosphorus choices.

I know this wasn't too helpful but I thought I'd share our experience.   

[drgirlfriend]

Sorry about your labs. That sucks. The ex-boyfriend takes Renvela and even though he's a 3 meals a day person, he only takes them when there are phosphorusy items in the meal. 2 reasons for this: his phosphorus was never super high and he's prone to constipation. If you eat a lot of high phos items, then yeah, try to find out how long you should wait between doses. Also, look for coupons to save money on the Renvela. It's pretty pricey.

[Angiepkd]

Thanks for the responses!  I am very careful with my diet, so I was shocked when my labs were so high.  I tell people I dream of cheese lol!  I will try and eat more normal meals and see if that helps.  I don't have much of an appetite, so I struggle to eat a big meal.  I am re-drawing labs next week.  Guess I will see where I'm at when I get those results.  Thanks again for the help!

[Joe]

To answer your question: my dietician tells me 15 minutes before a meal to 15 minutes after, I can take my renvella. I take 6 with big meals (Lunch, Dinner) and 1 for snax in the morning and afternoon.
Good luck!

[hillary]

I'm on Renvela, 2 tabs three times a day.  But I, too am more of a grazer.  My phosphorus was way up at my last labs. And I really am careful about what I eat.  So I took it upon myself to start taking the Renvela each time I eat a snack OR a meal.  I will be seeing my neph in a couple weeks and will talk to him about it, but sometimes I just have no patience to wait for him to call me back with answers. If he tells me not to take it more than 3 tims a day, I'll stop, but he will probably have to increase it to 3 pills 3 x a day.

[smcd23]

My husband is also on Renvela. He takes 2 with snacks 3 with meals. They work by binding with phosphorus in the stomach I guess so it can be removed and not absorbed by the body, so you should take it 15 min before, during the meal or up to 15 minutes after as Joe mentioned.

My husband is also a grazer, especially at night. So sometimes at night he will start snacking on popcorn, swallow a binder, then go back 5 minutes later for a cookie or something and then take another one when he's done eating the 2nd part of his snack because he's supposed to take 2 with snacks. We keep a bottle on the table so it's easy when he finishes dinner he just grabs them. Sometimes at dinner if he goes back for 2nds he will swallow an extra one when he is done just to be safe. His phosphorus was out of control for awhile, but now he's been able to keep it between 5 and 6.

I think the way they have to write the script is 3x-4x a day. I know my husbands script is written for like 240 pills per month, they figure 2 meals and 3 snacks for him because hes a grazer. If you're munching a low phosphorus food, you could probably get away with not taking one then, but you should probably clarify with your doc - they probably want you taking 1 any time you eat and just assume that you're eating 3 meals a day and may need to write you a script for more so you can make sure you're taking them when you eat.

Also keep an eye on what you drink - the binders apparently do not work with liquids because the phosphorus in the liquids gets absorbed by the stomach too quick.

[Zach]

My husband is also on Renvela. He takes 2 with snacks 3 with meals. They work by binding with phosphorus in the stomach I guess so it can be removed and not absorbed by the body, so you should take it 15 min before, during the meal or up to 15 minutes after as Joe mentioned.

My husband is also a grazer, especially at night. So sometimes at night he will start snacking on popcorn, swallow a binder, then go back 5 minutes later for a cookie or something and then take another one when he's done eating the 2nd part of his snack because he's supposed to take 2 with snacks. We keep a bottle on the table so it's easy when he finishes dinner he just grabs them. Sometimes at dinner if he goes back for 2nds he will swallow an extra one when he is done just to be safe. His phosphorus was out of control for awhile, but now he's been able to keep it between 5 and 6.

I think the way they have to write the script is 3x-4x a day. I know my husbands script is written for like 240 pills per month, they figure 2 meals and 3 snacks for him because hes a grazer. If you're munching a low phosphorus food, you could probably get away with not taking one then, but you should probably clarify with your doc - they probably want you taking 1 any time you eat and just assume that you're eating 3 meals a day and may need to write you a script for more so you can make sure you're taking them when you eat.

Also keep an eye on what you drink - the binders apparently do not work with liquids because the phosphorus in the liquids gets absorbed by the stomach too quick.

That's really great advice, smcd23.
Thank you!

 

[BattleScars]

I'm also a grazer and had to really change that habit. But if I do eat small snacks now I take at least one binder just to be safe. I was actually in the ER about a year ago and they finally fed me. I asked for my meds but they refused. Later they said they would give me binders with my food so I started eating. Then I had to beg for my binders but the nurse kept saying it was fine because it takes hours for food to be digested in the stomach. They didn't give me my binders for almost 2 hours after I ate! Pretty much useless at that point. Moral of the story, we are kidney patients and we know more about ourselves and our medical needs than the average nurse or doctor. You have to be careful when you are being treated by someone that isn't familiar with CKD.

[Swamp Gator]

I also am on Renvela and my prescription says 4 with meals and 1 with snacks.I am often a grazer and the dietitian at the kidney transplant hospital has told me to be a grazer. She wants me to eat smaller meals more often.

Our center dietitian is useless most of the time. The one useful thing she did tell us is that the Renvela pills work for 1/2 hour after you swallow them. I take them when I am ready to eat, not before I am ready. Our Dietitian recommends about 5 minutes at the most before eating.

As for the foods you want to eat... I eat a lot of yogurt, cottage cheese, baked beans, and we went through 5 pounds of sliced swiss cheese last month. There is just my husband and I.

This is how I figured it out... Just before labs I eat something I want on my forbidden list and take my binders with it. When my lab results come back in I read them and look for a lab to show up telling me I ate something I am not supposed to eat. If I don't see a change in my labs than what ever food I ate I put into my I can have list but don't go overboard.

My dietition at the kidney transplant hospital told me to start eating yogurt. My dietitian at the dialysis center freaked when she found out and told me to stop immediately. So I did. About 2 months later the dietitian at the kidney transplant hospital again told me to start eating yogurt. This time I ate it before my labs and took the full binders as if I am eating a full meal. My labs came back fine, so I have been happilly eating almost all the phosphorus foods I want and just take the binders as if I was eating a full meal.

The whole key is to check one food out at a time just before labs and see what your lab results say. Phosphorus and potassium will show on your labs almost instantly so you will know if you can have what you ate. I sometimes stopped at McDonald's or Burger King on my way to dialysis and had labs drawn as soon as I got to dialysis. Yes I eat hash browns once in awhile and even french fries from McDonald's sometimes. McDonald's soaks their french fries before shipping them to the stores.

Word of caution here, each of us is different, so check your desired foods out one at a time right before labs are drawn. A two day period before labs is the recommended time frame.

Oh and renvela and liquids... You take the Renvela just before the first swallow or with the first swallow. I am not a coke drinker but I tested coke out this way just before labs and I will occasionally have a coke. Same rule of thumb, treat the coke as if you were eating a meal. Take your Renvela accordingly.

I eat cheese almost daily. I eat 2-3 yogurts a day. When my dietitian at the dialysis center found out for the second time I was eating yogurt daily, she asked me how long I had been eating it. I told her 2 months, but in reality it was 3 months. She told me ok, my lab results were fine with me eating it. :-)

I also drink cows milk and eat ice cream. I just have to remember to keep my forbidden pleasures in moderation and take my binders.

Another thing I did was at the beginning of my taking Renvela is not take them as I should and allow the phosphorus level to run a little high so they would adjust the prescription to a slightly higher amount. This way I would have the amount of pills I needed to enjoy the foods I wanted that needed the use of the binders. You need to know your body and how to play with your dose to get away with this.

Oh and BTW I am a first time dialysis patient, I have never had a kidney transplant and I have been medically tested and told I am in very good health for a cantidate for a kidney.

SG

[pdpatty]

I take 2 breakfast and lunch and 3 with dinner.  Tried the powder but it is constipating and tastes awful. like drinking bad tasting sand.

[NDXUFan]

I recently had a "critical" lab result for phosphorus.  My level was 11.4.  Up until this, I had been controlling my levels without needing binders.  Not sure what happened, but my neph decided to prescribe me Renvela.  The directions say to take 1 tablet 3 times a day with meals.  My problem is, I am more of a grazer than a 3 normal meal person.  If I take 1 pill with my morning protein bar, how long does it work?  It is not uncommon for me to snack throughout the day, without having a normal breakfast and lunch.  I do eat a regular meal for dinner, but usually have a snack before I go to bed.  I have searched the Renvela documents online and can't find any information about how long it works after you take it.  Anyone have crazy eating habits like me lol?  How do you take your binders?  I am going to ask the doc on Tuesday, but sometimes you guys have more experience than the so-called experts!  Thanks for any help you may have for me!

Get on Nocturnal and lose the hypocrisy..... Binders are outrageous when it comes to pricing.