My Phosphorous is now over normal

[MooseMom]

Athena, yes, you are right in that it was Elaine who made the "spongeworthy" observation.  It was pretty much my motto in my pre-D days.

CKD plus diabetes equals a dietary nightmare, and I hope you find answers that work for you.

I personally didn't see taking binders as some sort of implicit permission to eat a "normal" diet, rather, I saw them as one more way to protect my body from the ravages of failing kidneys. 

Let us know what you decide about binders and if you choose to go ahead and start taking them.  Good luck!

[nursey66]

My hubby had much trouble with phos , too high, in the 6 range most of the time , He took Renvela about 12 -18 a day. They cost thousands, he went in the donut hole in 2 months. Then he refused to use it anymore and his Neph found a binder Fosrenol, only need 3. Day ,chewable and worked wonderful. It was still very expensive, but the Dr wrote the script for the larger milligram, he cut them in half, and since the cost was per pill, it was so much cheaper.Brought his phos labs to normal.

[kickingandscreaming]

Another alternative to Tums is calcium acetate, AKA Phoslo in Big Pharma language.  The thing with both Tums and Phoslo is that they can raise your calcium level--if that's an issue for you.  And they are not cheap either when bought the usual way. Here's the trick: my renal dietition turned me on to an online source of generic calcium acetate that only costs $18/ 200 tablets and each tablet has the same binding ability as 1 Renvela.  It's the exact same thing as Phoslo. And has much less ((I think 40%) of the calcium uptake as a Tum.  If you ask a pharmacist for generic calcium acetate, they will tell you there is no such thing or will charge you Phoslo prices for it.  If you order it from this mail order place, it turns out that there is such a thing. PM me if you're interested in the link.

[Athena]

I personally didn't see taking binders as some sort of implicit permission to eat a "normal" diet, rather, I saw them as one more way to protect my body from the ravages of failing kidneys. 

Mooseum, you make it sound like it's a sin to try to eat a 'normal diet'! Don't forget that in the beginning there was only 'normal' & nothing else to consider. Going from normal to some "new normal" shouldn't have to sound like a patient shaming & a discipline guilt trip - it is a slow gradual adjustment and everyone proceeds at their own pace based on medical results. Not one Neph who I've seen has made any dietary recommendations to me, not even the one who recently wanted to prescribe a phosphate binder. All of my dietary changes have been self-initiated based on what I read on kidney sites like this one.

I really don't understand why Nephs don't discuss or make dietary recommendations to patients. Because I look healthy, they must assume that I eat a 'healthy diet' & that must be enough for them. A renal dietician is only needed once there's a phosphate or potassium iimbalance from what I can gather.

[kickingandscreaming]

I really don't understand why Nephs don't discuss or make dietary recommendations to patients.

Because they're ignorant about nutrition.  There is a built-in bias in the medical profession towards drugs and heroic procedures and away from prevention.  Most MDs have a whopping 6 hours of training in nutrition throughout their medical training.  That shows how highly it's valued [sarcasm].  If you want nutritional guidance, don't expect from your neph.

[OneForTheBirds]

I have cut down the cheese completely (except for cream cheese that I don't really like, but it's useful as a substitute for milk in creamy sauces for example).

No nuts.

No more than one square of chocolate per day.  I've been having black licorice instead lately, I found it to be a good substitute.  I plan to remove chocolate completely after I slowly finish what I have in the pantry.

[Simon Dog]

Another alternative to Tums is calcium acetate, AKA Phoslo in Big Pharma language.

Nope

The active ingredient in Tums is Calcium Carbonate.   Phoslo a/k/a Calcium Acetate is a different compound.    Both bind phosphorous.

There are others as well - Fosrenol and Auryxia come to mine.   Auryxia is iron based and will make your stool as black as midnight.   If you take Calcium Acetate, the MD will be looking at your serum calcium level.  If you take Auryzia, attention will shift to iron levels.

As to nutrition - a renal dietitian sees me at my monthly appointment to render advice.

[Vt Big Rig]

Another alternative to Tums is calcium acetate, AKA Phoslo in Big Pharma language.

Nope

The active ingredient in Tums is Calcium Carbonate.   Phoslo a/k/a Calcium Acetate is a different compound.    Both bind phosphorous.

There are others as well - Fosrenol and Auryxia come to mine.   Auryxia is iron based and will make your stool as black as midnight.   If you take Calcium Acetate, the MD will be looking at your serum calcium level.  If you take Auryzia, attention will shift to iron levels.

As to nutrition - a renal dietitian sees me at my monthly appointment to render advice.

I was taking calcium acetate .... calcium levels started creeping up and (ahem) "output" was as hard as a rock, so I switched to Auryxia ...... the "black as midnight" comment is correct. First time I saw that it freaked me out. And luckily my insurance covers it. We keep looking for a medicare supplement I can get but now we continue a cobra to cover it.

As far as nutrition ...... I am blessed (or is it cursed) with a dear wife how is a registered dietitian AND worked in renal for 25 years. If I follow her direction things are good. I feel bad for the dietitian at the clinic. I don't listen to her and she knows it. She ends every session with . "of course, I know you have your wife to guide you"!! But rules say she must talk to me.

[Athena]

I really don't understand why Nephs don't discuss or make dietary recommendations to patients.

Because they're ignorant about nutrition.  There is a built-in bias in the medical profession towards drugs and heroic procedures and away from prevention.  Most MDs have a whopping 6 hours of training in nutrition throughout their medical training.  That shows how highly it's valued [sarcasm].  If you want nutritional guidance, don't expect from your neph.

That explains a few things K&S. The things we can learn from those who have walked the path before we ever did! Thank you.

(My low regard for Nephs has not moved up a notch unfortunately. Yes I know we can't blame them for our misery but I just expect a bit more medical assistance from them).

[Athena]

I have cut down the cheese completely (except for cream cheese that I don't really like, but it's useful as a substitute for milk in creamy sauces for example).

No nuts.

No more than one square of chocolate per day.  I've been having black licorice instead lately, I found it to be a good substitute.  I plan to remove chocolate completely after I slowly finish what I have in the pantry.

Licorice would be a good substitute. You mean the one that is sweet and like candy?

What is your level of kidney functioning?

[Athena]

I have insurance that will cover me for any phosphorous binder so would like to know which one may be the "Rolls Royce" of all binders?

Like most renal patients, I rely on Aranesp supplementation & my Ferritin iron levels seem to running in the middle of the normal reference range. I have normal calcium levels and my phosphorous is only occasionally above normal but usually is within normal ranges. My PTH level is however above normal levels but still within "acceptable levels for CKD" (whatever that exactly means).

[kickingandscreaming]

I have insurance that will cover me for any phosphorous binder so would like to know which one may be the "Rolls Royce" of all binders?

I don't think there is such a thing.  Each of our bodies is unique and the binder needs to be fitted to your blood work.  Some have no issues with calcium, and calcium is an inexpensive and excellent binder.  But if your calcium runs high then you need to look further.  The more recent "fancier" (read that more$$$$) are designed to not trigger the rise of something that needs not to rise.  Some (e.g. auryxia) also help maintain iron levels-- if you need that. Some, like the older aluminum-based ones are just bad news for the body. Period.

[Athena]

Okay, I will avoid anything with aluminium in it. That makes sense anyway.

These darn medical labels for meds can differ between countries a lot. I've heard of something called sensipar (Cinacalcet) which will fix both my PTH and phosphorous levels. Has anybody ever taken that before?

[OneForTheBirds]

I have cut down the cheese completely (except for cream cheese that I don't really like, but it's useful as a substitute for milk in creamy sauces for example).

No nuts.

No more than one square of chocolate per day.  I've been having black licorice instead lately, I found it to be a good substitute.  I plan to remove chocolate completely after I slowly finish what I have in the pantry.

Licorice would be a good substitute. You mean the one that is sweet and like candy?

What is your level of kidney functioning?

My eGFR is 9

I'm only just starting to inch up blood phosphorus. I follow a VERY STRICT renal diet.

[Michael Murphy]

You can restrict phosphorous but you can't eliminate it from your diet.  Ultimately you will need to take binders with your meals.  For most of us our path levels cause phosphorus ups and downs that's why you have a nephrologist.

[Charlie B53]

I am fortunate on PD while not watching my diet very well and rarely taking my binders, my phosphorus generally remains near 3.5 which I am told is very acceptable.  What isn't, or hasn't been acceptable is my blood calcium.  For a great many year I have always ran high, often just over the set lab limit.  After starting PD that started climbing, rising to a max of 11.7 I had crystallization in most all of my joints.  Psuedo gout.  Hurts like hell, and lasted for months.   We tried three different forms of Vitamin D, none did any good.   Sensipar (Cinicalcet) 10 pills a week has finaly made a difference.  Lowering my blood calcium low 9's IIRC from my last labs.

Life is soo much better without ground glass in my joints.

[KarenInWA]

Sensipar is not a drug you want to take unless you absolutely *have* to. Also, because it is so expensive, most insurance companies won't approve it unless you also have high serum calcium levels - in addition to high PTH/phoshporus.

The side effects of Sensipar can be brutal, and have been known to get in the way of quality of life. We're talking lots of time spent in the bathroom, and needing to keep a nice stock of TP handy.

My previous neph wanted to put me on it once, but thankfully, my insurance refused, and I think the transplant team also said it wasn't necessary (my transplant was injured by a biopsy, so because of that, it doesn't function as well as it should. However, I am still better off than I was at the same function with my useless native kidneys!). My calcium has always been in the normal range. My PTH is controlled by calcitriol.

KarenInWA

[Athena]

Sensipar is not a drug you want to take unless you absolutely *have* to. Also, because it is so expensive, most insurance companies won't approve it unless you also have high serum calcium levels - in addition to high PTH/phoshporus.

The side effects of Sensipar can be brutal, and have been known to get in the way of quality of life. We're talking lots of time spent in the bathroom, and needing to keep a nice stock of TP handy.

My previous neph wanted to put me on it once, but thankfully, my insurance refused, and I think the transplant team also said it wasn't necessary (my transplant was injured by a biopsy, so because of that, it doesn't function as well as it should. However, I am still better off than I was at the same function with my useless native kidneys!). My calcium has always been in the normal range. My PTH is controlled by calcitriol.

KarenInWA

Thanks Karen, that is most helpful. I've always been aware somehow that phosphate binders are not what you want to have to take! I get the feeling that people keep a pretty low profile about them. Is it diarrhea that keeps you in the bathroom? What is TP?

[kickingandscreaming]

This issue isn't phosphorus binders, but specifically Sensipar which is not just for that.  The main issue with phosph. binders is that many are quite expensive.  My Renvela dumped me in Medicare's donut hole.  Otherwise, I have no issue about taking them.  Some of the other ones that are less expensive have other consequences:  for example the older ones based on aluminum (which accumulates) and calcium which can raise the blood calcium in some to out-of-range levels.  There seems to be no way to avoid phosph. binders as protein needs are very real on D and protein foods (and most other foods) contain significant amounts of phosph also.

[Athena]

This issue isn't phosphorus binders, but specifically Sensipar which is not just for that.  The main issue with phosph. binders is that many are quite expensive.  My Renvela dumped me in Medicare's donut hole.  Otherwise, I have no issue about taking them.  Some of the other ones that are less expensive have other consequences:  for example the older ones based on aluminum (which accumulates) and calcium which can raise the blood calcium in some to out-of-range levels.  There seems to be no way to avoid phosph. binders as protein needs are very real on D and protein foods (and most other foods) contain significant amounts of phosph also.

K&S, leaving aside the issue of cost, what precisely are the side effects of phosphate binders? My understanding is that Sensipar is the best one. It corrects the phosphate imbalance and also the the high PTH problem. I am feeling disappointed about it having serious side effects though. My calcium levels have always been normal. What seems to be the best one then? I sure would like to take something that reduces the amount of phosphorous I take in. My prayer is that I will be able to take something without any disruption or noticeable side effects. I really need to learn more about them.

[kickingandscreaming]

I have used Renvela, Tums and Calcium Acetate (generic of Phoslo).  I haven't had any issues with any of them.  They all bind the phosphorus.  The calcium based ones can raise calcium levels in some and not others.  There are also iron-based ones (Auryxia) which are helpful if you're also trying to maintain iron levels. I think you're complicating it.  Sensipar is the only one I've heard about that has negative side effects (altho your mileage might differ) and it's overkill if you're just trying to manage phosp.. 

You're not even on D yet so you don't know what your blood work will be under those circumstances.  I managed my phosp. levels on 1 Tum/day until my kidneys totally crashed.  I had to stop the tums because they did raise my calcium and now I just take Renvela which keeps my phosph in range.  There's really not much more to say about binders. Keep it simple.

[OneForTheBirds]

Ah, that's funny, kickingandscreaming, I'm still at 9 but my team is puzzled that my numbers are so good.  I feel really crappy though.

A few days ago I was put on a calcium based phosphate binder.

[Athena]

Good news! I just received my latest lab results and my phosphate level was the lowest it has ever been for years!!!! It was at 1.19 mmol (ref 0.8 - 1.5). Calcium normal and my PTH was only marginally above the max normal level. Thank you Calcitriol!

So no phosphate binders just yet. I guess I can feel that my bones are safe from harm right now.

Maybe it was refraining from eating a bar of dark chocolate each night with nuts? I still eat cheese most nights for dinner.

[MooseMom]

That's fantastic!!!