May I have your thoughts on phos binders when pre-D?

[MooseMom]

Got lab results today.  Won't go into all the numbers, but I want to ask about PTH.

Phosphorous 4.7 (4.5 being the maximum "normal, so it is high, but just barely)
Calcium 10.0 (within normal range)
PTH 169 (high, but not catastrophically so)

My neph wants to start me on Renvela.  Now, I've heard nothing but whingeing about phos binders.  My mother took them all at one point or another and never found one that didn't cause her some gastric distress.  I am not happy about having to start binders because it is one more step into the abyss that is renal failure, but I also want to protect my body from the nastiness caused by high phos, and I am the most compliant patient known to man.  However, I would like y'all's opinion.  On the one hand, I'm happy that my neph wants to prevent problems before they start; he wants to protect my body just as much as I do.  But I am wondering if taking phos binders right now is too aggressive an approach (I'd be taking 2 at either lunch or dinner).

I like my neph and have always trusted him, but I trusted my mom's attorney, too, and look how that turned out.   I would just like a bit of feedback.  Thank you very much for your time.

[AguynamedKim]

In my research it looks like Renvela is the second generation version of Renegal. It looks like only relatively recently did the FDA approve the use of phosphate binders in pre-dialysis patients (2007). It looks like it did so as there was evidence that control of phosphate levels may slow the progression of kidney disease (in slowing decline in GFR) and prevent arterial calcification.  It did acknowledge that mild, transient GI issues may arise. 

I'm certainly no expert but my humble opinion is that it's a good approach to keeping you healthy. The longer you continue to receive good pre-dialysis care, the better you are going to be whatever may come. You can always back off if needed or perhaps try another binder if the side affects get to you.  I think it is aggressive treatment but in a good way.  I know it's something else to add but I also know that you'll be able to work through the issues.

[RichardMEL]

I'm in Kim's corner.

Renvela is definitely the next step on from Renagel.

I started taking phos binders before I started I. Probably a year or so before (to be honest I forget how long). At the time it was Caltrate, basically calcium carbonate, and it's horrid (specially when they told me I had to chew it with my food...it would be more fun to stick a stick of chalk in my mouth - at least I could have different colours!). Anyway about 18 months or so into D I was switched to alutabs - for one my Ca was going up too high because of the caltrate. That lasted for a year os so before we got approval to use renagel. Using alutabs was good because it cut down on Calcium, but the aluminimum went up(of course) - so not so good. The Renagel was helping with the PTH control (I later went on senspiar also which saved me from a parathyroidectomy).

For me, at least, Renagel was awesome. No side effects, I could take less of them with food than the caltrate, and did not have to chew, so it was basically just another tab with food. Like I said no side effects and my phos became well controlled - indeed I could even indulge in the odd coke or whatever.

I'm not saying Renvela(which I never used as I am not certain it is approved out here yet - I was on renagel until my tx) would work as well for everyone, but as a non calcium binder it works well.

Given your PTH has been flagged as a concern even prior to D it is important to do what you can to keep that in check - and one way is to get the balance of the "triangle" of PTH, K, Phos (and Ca) in balance - not very easy. I did find that being on renagel definitely kept the phos very stable, which in turn helped with the PTH.

I'm sure you know this MM but you want to keep that PTH under control for as long as you can - as high PTH will lead to bone disease, potentially parathyroidecomy (unless you can avoid it with meds like I managed - phew). SecondaryHyperParathyroidism is a serious (and common) condition for kidney failure patients, so really it's important to do all you can about it for as long as you can in my view.

For the record I'm still on sensipar now, even after the tx, because there's still some question about my PTH control.. so this stuff continues on.

I do not think it is too agressive at this point. I understand you don't want yet another reminder/sign that things are getting worse, but unfortunately that's life. I'd much prefer taking pills with food to the potential consequences down the track.

(of course if you do take it and have unfortunate side effects that's a whole other issue, but I do believe it is one of the more stable options out there so hopefully it will work well for you)

[jbeany]

I was on binders pre-D, too.  I think it's a good idea to stay on top of things.  Different functions fail at different rates, so there's no reason not to treat the first symptoms that show up, even if you don't need D yet.  (For example, I started on epo a decade before I started D.  I just needed a higher hemoglobin then, not toxin removal.)

[texasstyle]

I just wanted to say MM that my husband had never had any apprent gastric problems from the binders. They are one of the things he does stay on top of. I guess everyone reaacts differently.

[Marina]

if  I  remember  correctly I  started  taking  binders  more  than  a  yr  pre-D.    I  took  phoslo  667mg  one  with  meal  and  snacks.      If  I had  a  bigger  meal  or  higher  in phosphorus, I  was  told to  take  2  phoslos.
I  did  notice  that  when I  took   more  phoslo  I  did  have  constipation     But  nothing   colace  couldn't  take  care  off.
It's  VERY  VERY  important  to  keep  phos  and  calcium  levels  in  range.     I  know  it's  a  balancing  act,  and  at  times  a  bit  complicated,  but  it's  doable.   I  did  it  for  6½    yrs.             My  phos  levels  were  always  in the  mid-  high  3's  which is  perfect.   
BTW  last I  checked  phos  levels  should  run  between  2.5-4.9

PTH  should  also  be monitored  carefully  as  we  know  it  can  lead  to  osteoporosis.

I  think  it's  great  your  Dr  wants  to  start  you  on  binders  and  keep your  numbers  within  range.        It  also  helps  if you  cut  down  on  high  phos  foods.        But,  if you  keep your   phos  in  control,  you  will be  doing  a favor to your  bones  and  your  cardiovascular  system.

Take  care!   

Marina

[MooseMom]

OK, thanks everyone.  Believe me, I do understand the consequences of high serum phosphate, and I understand the PTH, calcium, phos triangle.  It's just that my phos really isn't that high, my calcium is normal but my PTH is on the rise, so I just wasn't sure if this was really enough to signal the beginning of needing binders.  I certainly understand the desire to nip a problem in the bud.  I understand all of that, but I couldn't recall anyone here talking about taking binders before dialysis began.

Yes, renvela is the buffered version of Renegel, and my neph said it is the binder that most people tolerate the best.  Fortunately he said that if I had any problems to contact him immediately, so I trust he won't let me suffer needlessly.

Thanks for all of the replies; you've given me more confidence.  I appreciate the information and support.  Thanks.

If anyone else has anything to add, I'd be grateful.

[rsudock]

Hello friend,
 
I took Phoslo and that ended up raising my calcium so I think the Renvela is a better choice! Neil and I never reallly had stomach issues either, but harder stools. (but this could also be related to not drinking very much as well)

Even though I didn't have to deal with PTH, Neil ended up taking Sensipar and was able to get his thyroid under control.

Seems like you may need to keep an eye on phosperhous foods. That should help with the Calcium and Phos.

Thinking of you!

xo,
R

[MooseMom]

R, I am very diligent when it comes to my pre renal diet.  Knowing the consequences of high serum phosphates makes those naughty foods unappealing to me, so I do not think the problem will be solved by diet alone.  I guess I will just have to find out for myself how well I tolerate it...or not!

[monrein]

I'd take the Renvela and see how it affects my lab numbers as well as how I tolerate it.  Squeezing out between a rock and a hard place is one of the things we renal types can get very good at.   

[cattlekid]

I am going back and forth between Renvela and generic PhosLo (no generic for Renvela).  Because I am on HD, I have to take 3 of either with meals and one with a snack.  So that's 10 a day.  The only thing that I can suggest is to find out about a discount card for Renvela.  The generic PhosLo was $10 copay for 3 months and the Renvela was over $300 for three months (same number of tabs).  The discount card worked with my insurance and brought my co-pay down to a somewhat reasonable level.

Because my Ca is back down to a reasonable level, I've been allowed to switch between the Renvela and the PhosLo at will.  I keep Renvela at work where I eat two meals a day and PhosLo at home for dinner, evening snack and weekends.

My dietitian gave me the discount card - it seemed like an Internet printout so I would assume your dr's office should be able to get it for you as well. 

[bluesgirl]

I took renvela for a few months before starting dialysis, so I guess it happens. I have had no problems with it, but then again I ahve had dihorrea since my kidneys started failing, so in my case getting ahrders stools really wouldn't be a problem.
The only issu I have had with renvela is that the pills are large, but I'd much ratehr have that than having to chew those godawful pills I had before ( think they're caller reneval.) When I was on those, I stopped eating at times becuase I knew everytime I ate something, I would have to chew one of those pills.

[MooseMom]

Yeah, I know cost is a factor, and I really hate that.  I'll have to keep an eye on that.  I'll be starting off on just 2 a day with either lunch or dinner, but I know that the time will come when I'll be swimming in phos binders.   I know that a lot of the phos binders are in the highest co-pay tier of my insurance plan, which I think is $140 for three months.

And I know they are stonking great big pills, too.  Urp.

[rsudock]

What do we think about taking TUMS with meals folks? Why isn't this prescribed as much in the dialysis population? Can we supplement with TUMS to make our pricey Revela last longer?

xo,
R

[jbeany]

TUMS can work, but you have to watch overdosing on the other ingredients in them, especially calcium.

[MooseMom]

I got my renvela in the mail today, and I was happily surprised that 1. it's not as expensive as I thought it was going to be (with my ins plan, it's $80 for 90 days) and 2. it's no bigger than some of the other meds I take.

I have two questions, however.  (I know I should ask my pharmacist, and I will, but I thought I'd see what you all do first.)  The patient information sheet says that some doctors want you to take renvela either 1 hour before or 3 hours after taking your other meds.  Well, I take meds and doctor-prescribed supplements all the damn day, so this particular guideline really throws off my timing.  My neph of course knows all the stuff I take, and he didn't say a thing about the timing issue.  Binders can reduce the efficacy of some meds (and I understand why), but not all, so I don't know what the hell I am supposed to do.  Do any of you have to time your other meds just right to accomodate the timing of your binders?  Does anyone know which meds that most renal patients take (ie bp meds and cholesterol meds) are affected by binders?

The second question is, what do you guys do if constipation becomes an issue?  I did do a search on IHD topics; I KNOW there is info on IHD about remedies for this, but I just can't find it.  Someone had concocted a special tea, I seem to remember.   Anyone have any tried and true solutions?

Thanks.

[Willis]

TUMS can work, but you have to watch overdosing on the other ingredients in them, especially calcium.

YES! My neph had me start taking Tums and my calcium went through the roof just between one lab and the next.
 

[RichardMEL]

I can only speak for Renagel, but my mantra with that was taking it with food. Since I also had to take other meds with food you couldn't really avoid some interaction. I found that it didn't seem to cause an issue with any other meds, or at least nothing that showed up in bloods. The important thing is to take the binder with food because that's what it is there for.

[MooseMom]

I can only speak for Renagel, but my mantra with that was taking it with food. Since I also had to take other meds with food you couldn't really avoid some interaction. I found that it didn't seem to cause an issue with any other meds, or at least nothing that showed up in bloods. The important thing is to take the binder with food because that's what it is there for.

Yep, taking it with food was the one thing that I was certain about.

I took my first dose today with lunch (2 pills), and I have to say that my tummy isn't particularly happy, and I've had the squirties.  I'm hoping that's a temporary condition.

[AguynamedKim]

Sorry to hear about the side effects, Moosemom. Hopefully they will go away. Go away side affects!

[Stoday]

I have to say that my tummy isn't particularly happy, and I've had the squirties.  I'm hoping that's a temporary condition.

Squirties is not good news, I hope you get over them. I get the occasional problem and fix if with just one 30mg tablet of calcium phosphate.

The main side effect I get from Renagel is the terrible farts. I can tell you, farts + squirties is BAD NEWS. 

[MooseMom]

I take 8 sodium bicarb tablets a day, and let me tell you, the wind those cause could power a galleon.

The squirties have abated quite a bit, but I'm still wary.

[AguynamedKim]

I take 8 sodium bicarb tablets a day, and let me tell you, the wind those cause could power a galleon.

I just woke up my wife I laughed so hard at that. Happy to hear the symptoms are better so far - I hope they stay that way for you.

[MooseMom]

It is funny only because you are about a thousand miles away.  Congress should give me a call because I could easily raise the debt ceiling for them...

[MooseMom]

Another question...

My neph told me he wants me to take two binders with "either lunch or dinner."  Dinner is usually with hubby, which means less renal friendly foods and more higher phos foods (like meat).  I have lunch by myself here at home (husband is at work), so that meal is much more renally friendly, phos-wise.  So, does it make more sense for me to take my binders with the meal that I know will be higher in phos (usually dinner), or does it matter, as long as I take it with food?

Thanks.