I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: MooseMom on July 07, 2011, 10:58:59 PM

Title: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 07, 2011, 10:58:59 PM
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: AguynamedKim on July 07, 2011, 11:58:47 PM
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: RichardMEL on July 08, 2011, 01:53:57 AM
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)
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: jbeany on July 08, 2011, 10:38:04 AM
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.)
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: texasstyle on July 08, 2011, 10:45:49 AM
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: Marina on July 08, 2011, 11:58:03 AM
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
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 08, 2011, 03:10:17 PM
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: rsudock on July 08, 2011, 10:30:45 PM
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
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 08, 2011, 11:55:06 PM
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!
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: monrein on July 09, 2011, 07:00:58 AM
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.   :cuddle;
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: cattlekid on July 09, 2011, 08:48:08 AM
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. 
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: bluesgirl on July 09, 2011, 11:38:22 AM
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. :P
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 09, 2011, 04:17:37 PM
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: rsudock on July 09, 2011, 06:59:40 PM
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
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: jbeany on July 09, 2011, 07:16:58 PM
TUMS can work, but you have to watch overdosing on the other ingredients in them, especially calcium.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 19, 2011, 01:01:26 PM
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: Willis on July 19, 2011, 01:26:19 PM
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.
 
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: RichardMEL on July 19, 2011, 07:51:36 PM
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 19, 2011, 09:15:07 PM
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. ::)
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: AguynamedKim on July 20, 2011, 08:35:13 PM
Sorry to hear about the side effects, Moosemom. Hopefully they will go away. Go away side affects!
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: Stoday on July 24, 2011, 07:14:21 PM
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.  :Kit n Stik;
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 24, 2011, 07:22:39 PM
I take 8 sodium bicarb tablets a day, and let me tell you, the wind those cause could power a galleon. :P

The squirties have abated quite a bit, but I'm still wary.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: AguynamedKim on July 24, 2011, 08:28:03 PM
I take 8 sodium bicarb tablets a day, and let me tell you, the wind those cause could power a galleon. :P
:rofl;
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 24, 2011, 11:28:42 PM
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... :P
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 31, 2011, 02:15:33 PM
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.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: rsudock on July 31, 2011, 07:14:33 PM
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.

Well if he only wants you to take the binders with one meal then choose dinner since you have more high phos foods...but shouldn't you take it with both meals to wipe out any phos you eat throughout the day?  Or is he wanting to watch your calcium too?

xo,
R
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 31, 2011, 07:54:53 PM
R, my calcium is fine.  My phos is ever so slightly above the normal range, but my PTH is starting to rise, so I think he is being pro-active and wants to get my PTH down but isn't so worried that he wants me to take the binders with all meals...yet.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: AguynamedKim on July 31, 2011, 10:04:54 PM
I thnk it makes most sense to take the binders with the meal that they are likely to be most effective, e.g. dinner with the higher phosphorous content. That said, I would also weigh in when it's least likely to hit you with side effects or when you would be least likely t be bothered with the side effects.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on July 31, 2011, 11:57:13 PM
I thnk it makes most sense to take the binders with the meal that they are likely to be most effective, e.g. dinner with the higher phosphorous content. That said, I would also weigh in when it's least likely to hit you with side effects or when you would be least likely t be bothered with the side effects.

It's funny that you should say this because today was the first day I took them with dinner instead of with lunch (which was actually brunch), but because of the way the timing of the day turned out, I thought taking them with dinner would be best (considering I have other meds to work around).  And OMG, we are talking cataclysmic squirties. ::)  I feel wretched.  Out of all the meds I've taken over the past 7 years, and let me tell you, I've taken a LOT, this is the worst I have felt.  So I think I may go back to taking them at lunch.  If my labs show no great improvement (I go back in early Sept), I'll speak to my neph about if I should be taking them with the higher phos meal (that makes sense to me, but like you pointed out, the side effects just are awful.  But maybe I just ate something that disagreed with me when eaten with binders.  I don't know; I'm just speculating.)
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: Cordelia on August 01, 2011, 07:19:03 AM
I don't get the squirties, but definitely I get the farts   LOL LMAO!   

I find I get so constipated from Renagel     :(
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on August 02, 2011, 11:06:57 AM
I got a bit of a shock this morning and am hoping someone here can shed some light on this.

I get my transplant bloods drawn each month as required, and so that I won't incur the $40 per month draw fee, my neph kindly agreed to give the lab a standing order to test for innocuous stuff; the lab can then draw the Gift of Hope blood "as a courtesy".

Well, little did I know that the "innocuous stuff" wasn't so "innocuous".  I got a call from my neph's nurse telling me that she got my labs back (I didn't know they even looked at this monthly lab!) and that my K was 5.7 (not dreadful, but high...I've always had problems controlling K) and my calcium was 10.5 (high normal is 10.2).  The higher K doesn't worry me too much, but my neph wants me to take 4 x 3 sodium bicarb tabs a day (up from 3+2+3) to combat that.  More pills :puke;, but OK.

But suddenly seeing a jump in my calcium does worry me; I do understand the consequences of high calcium.  I know it is not spectacularly high, but my neph does tend to treat problems as soon as he sees them, so I am grateful for his pro-active stance.  But I've just started taking renvela, and I know that binders can cause calcium to go up, right?  Is that right?  So, he has taken me off the 1000IU OTC vitamin D I take daily.  Does that sound to you like a prudent move?

I know it is not smart to take "web advice" over the advice of my neph, and that's not what I'm doing.  It's just that it is so hard to get in touch with my neph, so I thought I'd just ask here if this story rings any bells for any of you.

Thanks so much for any imput you can give!
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on August 02, 2011, 10:21:18 PM
 :bump;

Please, can someone give me a rundown on the PTH/calcium/phosphorus loop?  All of these things are slightly elevated, and I've been trying all day to learn about the relationship between these three things, and the explanations I get are either way too detailed with numbers I don't understand, or else the explanations don't go far enough.    I thought that low calcium was a side effect of high PTH trying to decrease high phos, so I am really confused.  What would make my calcium go up?  My binders don't contain calcium, btw.

Oh, and I think I understand that vitamin D supplements can cause high calcium if high phosphorus/PTH is evident.  That's why my neph told me to discontinue vitamin D, is that correct?  Anyone?
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: jagermiester on August 03, 2011, 06:16:16 AM
I am very confused about all of this too.  Now, when I saw the neph last month he said that my kidney's were not producing enough Vitamin D so he prescribed Calcitriol.  Is the PTH numbers the one to look for to see if Vitamin D is being produced?  And if so, MosseMon you asked about too much Vitamin D suppliments can cause high calcium?

I'm really confused about all of this.

:bump;

Please, can someone give me a rundown on the PTH/calcium/phosphorus loop?  All of these things are slightly elevated, and I've been trying all day to learn about the relationship between these three things, and the explanations I get are either way too detailed with numbers I don't understand, or else the explanations don't go far enough.    I thought that low calcium was a side effect of high PTH trying to decrease high phos, so I am really confused.  What would make my calcium go up?  My binders don't contain calcium, btw.

Oh, and I think I understand that vitamin D supplements can cause high calcium if high phosphorus/PTH is evident.  That's why my neph told me to discontinue vitamin D, is that correct?  Anyone?
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: RichardMEL on August 04, 2011, 06:20:00 PM
OK here's my layman's explanation of my understanding of the relationship between PTH, phos & calcium.

Basically the main issue is that if your PTH gets too high, which can be caused by higher levels of Phos and/or calcium, then it "leaches" the phos/ca from the bones, making them brittle, easy to break - a condition known as secondaryhyperparathyroidism. Obviously this is very bad in the longer term, quite apart from what higher levels of phos can do to you on a short term basis (which to be fair I don't actually know - the emphasis to me was always on controlling the levels to ensure PTH didn't skyrocket). See I think the glands push up the PTH production when levels of one or the other are elevated, so that's why you need to keep them in balance as much as possible - and this is a VERY difficult thing - specially as you could often get say Calcium down, but the Phos might be out of control, or the other way around.

Epoman was an example of someone who suffered badly from secondaryhyperparathyroidism and wound up in a wheelchair due to his brittle bones. :(

Back to the question about when to take the binders? I always based by binder numbers on WHAT I was eating rather than when. More phos = more binders - and that includes snacks etc not just main meals. Obviously you need to be guided by your neph/dietician, but I always used that as a general rule.

Luckily I never had any side effects to Renagel.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: jbeany on August 04, 2011, 06:42:49 PM
Moosemom, if you haven't looked at it before, you might want to check out Fresenius's Kidney School.   http://www.kidneyschool.org/
Go to the learning modules, and check out Module 16.  It's an in-depth, but pretty clearly explained description of how the parathyroid glands, the PT hormone, calcium and vitamin D all work together.  You can print it out, or just open the module on-screen to read through it.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on August 04, 2011, 07:53:24 PM
Jbeany, I love Kidney School; I had in fact read through all the modules before, and I knew that somewhere I had read a clear explanation of this conundrum, but I had forgotten that it was in Kidney School that I had read it, so thanks for reminding me.

I see now why my neph doesn't want me to take more vitamin D, even if it was just over the counter.

I am on the review panel for Dr. Agar's new book, and that's where I had learned about the Calcium-Phosphorus Product, which is a very useful tool.  I see that Kidney School talks about it, too.

Richard, yes, it makes sense to take the binders with a higher phosphorus meal, which for me is dinner, but the two times I've taken it in the evening, it has given me a right ol' belly ache.  My tummy isn't real happy when I take the binders with lunch, either.  But I think I'll give it another try.

Thanks both of you for your replies.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: RichardMEL on August 04, 2011, 11:40:55 PM
Sounds like you need a different binder that your tummy can tolerate?
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on August 22, 2011, 01:59:15 PM
OK, so I've been taking renvela for about a month now.  Overall, it's not great, but it's tolerable.  Most days I feel ok, but there have been a couple of days when I have really not felt good at all.  Like last night...I took my binders at lunch, but after I had dinner (a small lamb chop, a couple of bites of steak, roasted corn on the cob and a salad with a dressing I made with olive oil, shallots, champagne vinegar, cumin and lemon juice), oh my goodness gracious...as the night wore on, I had mega-squirties and my belly felt so bloated and uncomfortable.  I felt really unwell in myself, and my bowels just burbled loudly.  This same thing has happened on one or two other occasions, and it made me wonder if there is something I ate that just doesn't "go" with binders.  Do any of you have trouble with one particular food now that you are on binders?

I had to have my gallbladder out last year, and I think that I don't digest certain things very well.  I generally eat a rather low fat diet, but my husband wanted me to try several bites of his rib-eye last night, and I think that might have been too rich for me.  I don't usually eat a lot of red meat, so I'm wondering if this was the cause of my awful night.

But I feel decidedly different now that I'm on binders.  I don't feel really sick, but there seems to be this undertone of nausea or fragility I'm having to live with.  Yes, it is certainly possible that it's because my renal function continues to decline.  My last lab showed my egfr down to 14 and my creatinine at 3.5, but I felt better the week the blood draw was taken than I did the week I started the renvela.  So, I guess my question is...did binders make you feel just generally every so slightly queasy?
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on September 07, 2011, 09:42:31 PM
OK, so, I've been on my binders for about 6 weeks; last week I had blood drawn for my usual neph appt, and I get the results tomorrow.  I will be interested to see if the binders have lead to any improvement in my calcium, phos and PTH values, and if they haven't, I'll be interested to see what happens next.  I sure would like a little bit of good news; it has been a very long time since I've had something good to report to IHD.
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: del on September 08, 2011, 05:45:16 PM
It would be better to take it with the one that is higher in phos. 
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: AguynamedKim on September 08, 2011, 06:34:34 PM
Here's hoping your labs come back with great news!
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on September 09, 2011, 10:32:05 PM
You won't believe this.

At my last appt in July, my neph started me on binders.  OK, fine.  At the end of July, his nurse had reason to call me about something unrelated, and I mentioned to her that I had noticed that the neph had forgotten to tick the PHOSPHORUS box on my next lab request; I thought that was odd since I had just started binders and was sure that the neph would want to see if my phos level was reduced as a result.  She said, "Oh, he must have just forgotten, so could you just tick that box yourself?"  I did, and some weeks later went in to have my labs done as usual.

So yesterday I go to get the dreaded results; we all know how nervous we get when we have lab results coming up.  I slept badly for two nights before the appt, and once I got to the neph's office, they didn't have my results on my file (I always have a gander at them first), so I had to sit there and stew an hour before I could get ahold of my results.  And OMG you will not believe it...the lab people STILL did not check my phos! 

However, my calcium was back to within normal range, and my PTH went from 165 to 110...still above normal but better, so I guess the binders are doing their thing.  But I just couldn't believe it.  My phosphorus level is a state secret, I guess. ::)

My egfr soared from 14 to 16  ::), and the neph and I ended up talking about his upcoming vacation to the UK, so it was all much ado about nothing, which is just how I like it.

Thanks for asking, Aguynamedkim.  Very thoughtful of you! :cuddle;
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: AguynamedKim on September 12, 2011, 04:02:17 PM
Great news on the labs, Moosemom!  Im so sorry you didn't get to view what I know would have been good phosphorous labs so you'll just have to keep up the great job and see them next time!  So proud of you!
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on December 04, 2011, 03:29:32 PM
Have any of you experienced nausea with binders?  I've been feeling nauseous lately, or at least it has just started registering with me as I never feel really great, and I have been chalking it up to CKD.  With an egfr no higher than 16, this isn't an unreasonable assumption.  But I don't feel this way all the time, and now that I have really started thinking about it, I seem to have discovered that if I take my binders with lunch (ie, earlier in the day),  I notice the nausea after three or four hours, and it will persist for most of the rest of the day.  If I take my binders at night (my neph told me to take them with just one meal, so I choose the more phosphoric one), then I don't seem to notice that motion-sick feeling as I guess I'm asleep. :P

Does this sound familiar to anyone?  Does this make any sense at all?  Thanks.

(I don't really want to change binders as I suspect that all of them will make me feel this way.  I think if I take them at night only, then I should be OK, but I'm still wondering if any of you have felt this particular side effect.)
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: Cordelia on December 04, 2011, 03:51:14 PM
I  have never heard of nausea from taking binders. What kind you on? I'm on Renagel. What's your serum phosphate levels?    I had severe constipation starting mine.  Took time getting used to.....how long you been on binders, is this something you noticed just started?    I would think its from high serum blood phosphate levels/lowered kidney function but then I don't know what your labs are. I hope a doctor/pharmacist can help you.....pharmacists are a fountain of knowledge, somtimes more helpful than the doctors ever are-mine is very helpful, even more than my nephs. Good luck and I hope it goes away soon, MM!      :cuddle;
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: fearless on December 04, 2011, 07:21:17 PM
MM, the main problem I've had from having to take binders is wicked heartburn.  If your kidney function was about the same before you started taking binders and you didn't feel nauseous then, and now you feel nauseous and taking the binders is the only thing that's different, then it sounds like they're probably making you nauseous!  Everybody's different.  People often try different kind of binders before they find what's best for them.  It sounds like your doc is pretty on top of things.  Maybe he can help you.  Or maybe your body will adjust after a while and the nausea will pass.  Either way, i hope you can get past it soon. 
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on December 04, 2011, 07:33:33 PM
Cordelia, I'm on Renvela, and I've been taking them since July.  My July labs showed my phos at just above the high side of normal, but my calcium was up (again just on the high side of normal) and my PTH was going up.  For some mysterious reason, they forgot to check my phos in my last set of labs, but my calcium was OK and my PTH was quite a bit lower, so the binders seem to be working.  I get my next results this week, so I'll be better able to see what's going on, assuming they remembered to check my phos. ::)

fearless, I did notice that nausea was listed as one of the possible side effects of renvela, but just about every possible gastro-intestinal malady is also listed, so that doesn't give me much info.  I've read plenty of posts from people here talking about binders, but I don't recall ever reading about anyone feeling nauseous with binders, so I thought I'd ask.  Yeah, taking the binders is the only thing that's different, so that's probably it, but I still wanted to ask.  Thanks!
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: fearless on December 04, 2011, 07:42:31 PM
I remember you mentioned that you'd had your gall bladder removed too.  That might play into how your digestive system is reacting to the binders being added to all the other kinds of things it has to handle  :)  I wouldn't necessarily worry that it means there's something wrong, but of course you don't want to have to live your life with nausea...it's sickening!  :)  I have to take a lot of binders (more than normally prescribed)  phosphorus is a big problem for me.  But the more I take the worse the heartburn.  I was really afraid it was gonna eat my esophagus.  Now i have to take a prilosec every morning - yay, just what I needed - another pill!  Also, i saw that your PTH looked pretty good!  i understood that under 150 was good for anyone with kidney failure.   I think the first intervention in the whole calcium/phos/PTH thing is definitely to try to control the phosphorus, as that is the first thing to get out of whack and then effect the others.  So I commend you and your doctor for managing in this way.  I wish my own doctor had been so proactive.
again, hope the nausea goes along on it's way to someplace else
cheers
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: MooseMom on December 04, 2011, 07:47:43 PM
Yeah, gallstones showed up during my initial pre-transplant evaluation, so they made me get the gallbladder removed.  I had had some horrible gallbladder attacks in the past, so I saw the wisdom in this decision.  I don't tend to eat fatty or oily food, but if I do, oh man, it goes right through me.  So with that plus binders, my g.i. tract is confusing me.

Thanks for your reply!
Title: Re: May I have your thoughts on phos binders when pre-D?
Post by: kellyt on December 04, 2011, 08:15:34 PM
I never had to take a prescriptive "binder", but I did take a Tums after meals for a while.  My phos never got higher that 5.4, I think.  But the Tums did the trick.  After a while he had me stop because my calcium got really high.