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

[rsudock]

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

[MooseMom]

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.

[AguynamedKim]

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.

[MooseMom]

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.)

[Cordelia]

I don't get the squirties, but definitely I get the farts   LOL LMAO!   

I find I get so constipated from Renagel     

[MooseMom]

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 , 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!

[MooseMom]

 

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?

[jagermiester]

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.

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?

[RichardMEL]

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.

[jbeany]

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.

[MooseMom]

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.

[RichardMEL]

Sounds like you need a different binder that your tummy can tolerate?

[MooseMom]

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?

[MooseMom]

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.

[del]

It would be better to take it with the one that is higher in phos. 

[AguynamedKim]

Here's hoping your labs come back with great news!

[MooseMom]

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!

[AguynamedKim]

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!

[MooseMom]

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.

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.)

[Cordelia]

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!     

[fearless]

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. 

[MooseMom]

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!

[fearless]

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

[MooseMom]

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!

[kellyt]

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.