What do you think of specific binders?

[unvaso]

Hello everyone!
I am a social worker in Ohio, and I was wondering if you could help me with a bulletin board/ educational topic.
Our doctors tend to stick with the same binders (Renvela, Phoslo, Tums) for everyone, and every month we talk about how few of our patients have phosphorus levels within range, what to do to encourage compliance and improve lab results, etc.  My assumption is that the more patients know about their binder options, the more likely they would be willing to try something different that might work better for them. We can educate to the end of time, but if someone doesn't want to swallow 5 large pills during every meal, we probably won't ever change that! But they might have no problem with chewing one wafer or taking a shot of a liquid binder.
I'm going to post pictures and descriptions of the different binders I know about, pros and cons of each, and if that binder has a patient assistance program to assist with cost. I have limited knowledge of binders except the ones my patients already take, so hope to get some additional information from you.  For instance, specific side effects (or lack of), taste, expense, ease of use, and if the binder helped keep your phosphorus levels within range.  If you have had experience using Velphoro, Foslyria, Fosrenol, Auryxia, or Renagum, could you post your thoughts?  I have a couple of patients on the first two, but would like some more opinions.  Since almost all of my information is coming from the manufacturer's website, I would like to be able to add patient experiences in addition to the ad copy... Thanks for your help!

[noahvale]

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[jeannea]

High phosphorous levels are a combo of a few things. I took PhosLo and then changed to Renvela. Yes binders are annoying but I think most people take them. One factor could be those who forget or refuse to take binders. Next is dialysis. We get dialysis in center for maybe 12-15 hours a week. That is not enough, even with binders, to help everyone. More dialysis might help with phosphorous levels but not everyone can do home dialysis. Next is the fact that ESRD sucks. You are asked to give up a lot of really good foods because of phosphorous or potassium or salt. I find it hard to blame anyone who slips and eats a favorite food. I know some patients who don't even try to follow their diet because the whole thing is just awful. In another factor, binders can be constipating. Not drinking much fluid is already constipating. The whole thing is a mess.

Options with binders is a great idea but also look at the overall picture.

[PaulBC]

I always see Tums listed as a binder, but are they really effective? My daughter uses Renvela, which I think would be a lot more expensive than Tums if it weren't for insurance covering most of it. If Tums actually works, why are there so many alternatives?

[unvaso]

Well, (disclaimer: I am only repeating what dieticians have told me)  Tums can raise calcium in your blood, so that's why some people can't take them (if their calcium is already too high). They are relatively cheap, but it seems like most patients have to take a lot of them to be effective (so probably would be cheaper overall for them to be prescribed something else.) Plus some people complain that the tums ruins the taste of their meals.
Thanks for the comments everyone.  I am certainly aware of the big picture ("ESRD sucks"!), but the even bigger picture is that unchecked high phosphorus (hyperphosphatemia) is one of the strongest indicators of early patient mortality, according to the literature.  Which is not to say that all of the other things we nag you about (eating more meat, drinking less fluid, etc.) are not important.  It all is important and incredibly complex to juggle.  However, phosphorus just happens to be one of those things that patients can control, and it does make your life longer and better if you do so.  I have seen what happens after a few years of not caring about phosphorus...I also know warning people, showing them "worse case scenario" pictures, education, etc. doesn't seem to work, so I'm hoping that if my patients feel they have more of a say in what they are prescribed, it might make a difference.  Thanks again!

[MooseMom]

I was prescribed Renvela and had occasional bouts of diarrhea as a result, but I knew this would happen because my mother experienced the same.

Well before I needed binders, I looked at "worse case scenario" photos well, and let me tell you, I NEVER hesitated to take them.  Scared the heebie jeebies out of me. 

Sure, you could give patients a "choice", but where would said patient even begin?  I know my mom took several types of binders before she settled on one that had fewer side effects than the others, so kudos to her clinic for listening to her concerns.

[PaulBC]

We've never questioned the need for binders, and our care team is pretty reasonable in pointing out that high phosphorous is more of long term issue than an emergency. They also want to make sure my daughter gets the nutrition she needs, and this is a tough thing to balance out.

Renvela has worked out fine in pill form, but she did not like the powder at all. The biggest issue is what to do about small snacks. If you eat, say, one cracker in between meals, using an entire Renvela seems like a waste. On the other hand, I understand these things add up.

[talker]

Hello everyone!
I am a social worker in Ohio, and I was wondering if you could help me with a bulletin board/ educational topic.
Our doctors tend to stick with the same binders (Renvela, Phoslo, Tums) for everyone, and every month we talk about how few of our patients have phosphorus levels within range, what to do to encourage compliance and improve lab results, etc.  My assumption is that the more patients know about their binder options, the more likely they would be willing to try something different that might work better for them. We can educate to the end of time, but if someone doesn't want to swallow 5 large pills during every meal, we probably won't ever change that! But they might have no problem with chewing one wafer or taking a shot of a liquid binder.
I'm going to post pictures and descriptions of the different binders I know about, pros and cons of each, and if that binder has a patient assistance program to assist with cost. I have limited knowledge of binders except the ones my patients already take, so hope to get some additional information from you.  For instance, specific side effects (or lack of), taste, expense, ease of use, and if the binder helped keep your phosphorus levels within range.  If you have had experience using Velphoro, Foslyria, Fosrenol, Auryxia, or Renagum, could you post your thoughts?  I have a couple of patients on the first two, but would like some more opinions.  Since almost all of my information is coming from the manufacturer's website, I would like to be able to add patient experiences in addition to the ad copy... Thanks for your help!

I've been taking Fosrenol for 9 years with excellent results.  It's a chewable, but there isn't much of a chalky taste - well to me.  As I'm about to eat, I bite off about 250mg.-333mg. (.25 to .33 of a 1000mg. tab) depending on how much and what my meal consists of.  My monthly phos blood level runs 3.2-4.0.  My prescribed treatment time is 6.0 hours x3 weekly which also helps to clear phos - a medium size molecule not easily cleared in standard 3-4 hour treatment - from the blood system.

Since being on a Medicare Part D drug plan, I have found Costco Pharmacy to have the lowest cash price on Fosrenol which helps to lower the copay and stretches out the time before hitting the doughnut hole. I end up paying $57 for 4 bottles of 10-1000mg tabs which lasts a month (according to my pharmacist, the 1000mg tabs are a better deal than getting the 500mg, but it is a bit less convenient). One does not need to have a Costco card to use pharmacy services.

http://www.thetalker.org/archives/287/37-talker-on-prescription-drugs-at-costco/

http://www.wisebread.com/7-things-non-members-can-get-at-costco-including-cheap-eye-exams

http://www.costco.com/Pharmacy/home-delivery?storeId=10301&catalogId=10701&langId=-1

[iolaire]

I take renvela and am happy with it, but I think I still have a good bit of kidney function helping me.

Someone mention photos of sick people being modivating to be good with your binders. I support visual aids also. One clinic I visited had takeout cups in poster board showing how much liquid they contained.

That leads me to ask if people really understand that prepared and junk food has phosphorus added to it?  I think a visual on common prepared food might help people understand how much phosphorus they are consuming.  I think the education is good about targeting what raw foods to eat, but it's not so good about quantifying that two pieces of wonder bread has X mg of phosphorous.  (But we are told to eat white bread over whole grains, leading people to products with added phosphorus.)

Thank you for asking and trying to help your patients.

[unvaso]

Thanks again everyone. We don't have a Costco here, but there is a Sam's Club- I'll have to check to see if it's the same deal. 
Please continue to give me suggestions/opinions if you have any.  I hope to have this done by next week and will let you know how it goes. 
Coincidentally, next week I will be in Indianapolis for a Renal Network (Region 9) meeting; I am on a committee that develops patient educational campaigns on three topics every year.  One of the topics just happens to be "Controlling Binders Through Binder Adherence" (I know, catchy title ...not! )
We were all asked to try to gather patient input on:
a. Tips for taking phosphorous binders
b. What are 3 important facts that patients need to know about the importance of taking binders?
c. What are 3 suggestions you have for staff when talking to patients about binders?
d. Patient stories such as the importance of  taking binders, what they learned from not taking their binders as prescribed, what motivated them to take them, etc
So, I would still love to get more input on my original questions regarding binders, but if anyone would like to contribute anything that would be useful to the Renal Network educational campaign, please let me know! (Some of you already have without realizing it, so thank you!)
Also, if you are in Ohio, Kentucky, Indiana, or Illinois: if you would be interested in writing a short article or story for their quarterly newsletter, Renal Outreach, contact me.  It can be about this topic, or one of the other 2 educational topics for 2015 (which are "hand washing" and "participating in your care plan) or ANYTHING YOU WANT!  They are constantly trying to recruit patients to contribute to their newsletter.  You can email me directly if you want: ablagg@americanrenal.com 

[PaulBC]

Please continue to give me suggestions/opinions if you have any.  I hope to have this done by next week and will let you know how it goes.  com 

This isn't a suggestion, but one question we have always had is about the timing of the binders (in our case Renvela). Ideally, they should be taken with the meal, but how effective are they if taken 1/2 hour before (or 1/2 hour later)? What about 3 hours before or after (or any time in between)? Will they bind anything or just pass through. As I understand, they bind the phosphorus before it is absorbed and don't do any good if they aren't present with the food being digested, but I'm curious what the actual time limits are.

Then (as noted) are there any good guidelines about between-meal snacks? These are particularly important with kids, since they may have an after school activity between lunch and dinner. We use 1 Renvela for a snack or skip it for something like fruit with very low phosphorus. Occasionally, my daughter might be offered a small cookie or a sample between meals. In that case, I think it's more important to keep her life fairly normal and make the same judgment call I would with any other kid about whether she is allowed to have it. I now know the phosphorus content of a lot of different foods, and I treat to keep a rough mental tally.

[unvaso]

PaulBC, our doctors and the dietitian all say that if you take a binder 1/2 hour before or after a meal, it's a little bit effective (better than nothing), but beyond that, it is not effective at all.  In other words, no point in taking Renvela if it is 3 hours before or 3 hours later.  I don't know the actual time limits or rate of effectiveness, I imagine it depends on the person and how fast or slow food goes through them.  As far as recommendations on snacks, definitely ask your dietitian that.  It's all so patient-specific, plus I have only worked w/ adults and don't want to pretend I know anything about pediatric ESRD. I agree to keep life as normal as possible, and hopefully the dietitian says she can have the cookie!!

[Texasondialysis]

I just switched from Renvela to Auryxia.  Dark stool and a little diahrrhea.  Overall, it's binding phosphate very effectively according to my doctor and increasing my iron which I've been taking IV iron for.  I can see why people like Auryxia...  It's fairly new, but I'm trying to find someone who has been on it for awhile so I can find out what their experience has been.  So far, it's working out great for me and I'm going to stick with it for a long while.  My iron levels have never been this good...  Interested in what others have to say about Auryxia.  Thanks, JB

[noahvale]

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[kristina]

If I may, I would like to ask a question about binders: When exactly do doctors prescribe binders and why ?
I am asking because I have not been prescribed binders and apart from my BP-medication and diuretics
I don't take any further medication, except the Epo etc. I am given at my dialysis-centre ...
Thanks from Kristina.

[iolaire]

If I may, I would like to ask a question about binders: When exactly do doctors prescribe binders and why ?
I am asking because I have not been prescribed binders and apart from my BP-medication and diuretics
I don't take any further medication, except the Epo etc. I am given at my dialysis-centre ...
Thanks from Kristina.

My dietitian at my US center prescribed them once my phosphorous started being elevated in the monthly lab work. 

[unvaso]

Thanks for your input re- Auryxia, Texasondialysis- It is new, so I don't know much about it. I was wondering about the iron part- the dietitian had read somewhere that it would also help improve iron levels (and presumably help with anemia?) but when I looked at the website for it, it didn't even mention that as a selling point- which you would think would be a pretty big selling point if it prevented anemia AND lowered phosphorus at the same time. 
Kristina, congrats on avoiding binders so far.  Most patients I work with need binders at some point to control phosphorus levels, but there are some who are never prescribed binders- either because they monitor their diet really well and avoid high phosphorus foods, or they are really lucky and their kidneys still manage to get the excess phosphorus out of their system.  Why high phosphorus is bad- simply put, extra phosphorus pulls calcium out of your bones, which 1. makes your bones very weak and brittle, prone to breaks and 2. the phosphorus and calcium deposits in your soft tissues instead: skin (which is why people complain of itchy skin when their phosphorus is high), blood vessels, organs, etc. It's one of those things that might take a while to get really, really bad, but once it's bad it's next to impossible to turn it around.

[Tío Riñon]

During the few years that I've been on dialysis, I've tried a variety of binders.  Since I am a "sizeable" person, I normally need to take many pills and that tends to be a problem.  I get tired of taking pills all day!  I already have the medications which must be taken due to kidney disease, then I am supposed to consume a bunch of pills every time that I eat food.  Moreover, since I work and travel, often I am not at home, so then I would need to remember to carry sufficient quantities in case I eat while I'm out.  It is quite a burden!

Here's what I have worked with so far:
• PhosLo - took 5 with meals and 3 with snacks.  The capsule is fine, but big, so it is a challenge to take so many.  Eventually had stomach upset and stopped taking.
• Velphoro - I liked the idea of taking a liquid, but it wasn't easy to carry.  Of course, it didn't taste good.  High in iron, so stools were black with occasional constipation.  Didn't work for me, so I switched.
• Renvela - Huge pills (800 mg) and needed 4 per meal.  Very difficult to swallow.  Didn't like taking them with meals & snacks.  Stomach upset returned.
• Renvela & Tums - Working with my dietitian, we finally came up with 4 Tums (750 mg) & 1 Renvela.  My labs have been on point since I don't mind eating the Tums (I can choose flavors that I like) and 1 Renvela is manageable.  I adjust for snacks based on phosphorous level.

I like your idea of having visuals for the possible outcomes of not controlling phosphorous.  Just like kidney disease or hypertension, there are often no symptoms until it is too late.  Patients need to understand the outcome.  Also, descriptions of the treatment and/or quotes from patients diagnosed with hyperphosphatemia may help.
Definitely let your patients know that there are various options and encourage them to explore which one works best for their life style.  It took me years, but now I'm on track.

Please share what you decided to do at your facility and also what you learned at your Renal Network meeting. 

[unvaso]

Sorry for the delay, got sidetracked with work, vacation plans, baseball/t-ball games, etc. etc.... Here is my finished product, as requested.  Can't say I got much response or feedback at my clinics. I posted this on the bulletin boards in the lobby and by the scale in both of my facilities, and sent it to the dietician so she could use as handouts if she wanted.  I haven't heard that anyone has found the info useful, much less used it as a tool to evaluate their binder options...oh well, maybe it will help someone on this forum!
Regarding the Renal Network meeting- they are in the process of implementing a program in this region (OH, KY, IN) that apparently has already been tried out and deemed successful in Region 10 (IL).  They are rolling it out to randomly selected facilities now.  I don't know much about it other than it involves a checklist that the dietician fills out with each patient every month, and a bunch of patient education.  The details are supposed to be available by the end of the year on the Renal Network website: www.therenalnetwork.org 

[kristina]

 
Kristina, congrats on avoiding binders so far.  Most patients I work with need binders at some point to control phosphorus levels, but there are some who are never prescribed binders- either because they monitor their diet really well and avoid high phosphorus foods, or they are really lucky and their kidneys still manage to get the excess phosphorus out of their system.  Why high phosphorus is bad- simply put, extra phosphorus pulls calcium out of your bones, which 1. makes your bones very weak and brittle, prone to breaks and 2. the phosphorus and calcium deposits in your soft tissues instead: skin (which is why people complain of itchy skin when their phosphorus is high), blood vessels, organs, etc. It's one of those things that might take a while to get really, really bad, but once it's bad it's next to impossible to turn it around.

Hello unvaso and thank you very much for your kind explanation about binders.
I am still not taking any binders and shall continue to do my very best and try to avoid them for as long as possible... I have no idea
whether the fact, that I don't need binders is due to my easy digestible vegetarian diet or whether my "two little fighters" continue to serve me well...
... Mind you, I still continue with my kidney-friendly vegetarian diet and I still eat every day a little portion of asparagus
which continues to act as a very gentle natural diuretic... (touch wood!) ... and I also continue to drink every day a little cup of peppermint-tea
which is known to inspire the kidneys to continue their work a little longer... (touch wood!)
Best wishes from Kristina.

[Tío Riñon]

Sorry for the delay, got sidetracked with work, vacation plans, baseball/t-ball games, etc. etc.... Here is my finished product, as requested.  Can't say I got much response or feedback at my clinics. I posted this on the bulletin boards in the lobby and by the scale in both of my facilities, and sent it to the dietician so she could use as handouts if she wanted.  I haven't heard that anyone has found the info useful, much less used it as a tool to evaluate their binder options...oh well, maybe it will help someone on this forum!

Just wanted you to know that I shared your document with my dietitian.  She loved it!  She wants to share it with other dietitians at clinics in our Metro area and use it to educate patients.

Thanks for your hard work.

[unvaso]

Thanks for sharing, Tio Rinon!