I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Athena on April 12, 2016, 06:05:20 AM
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My Neph called me today to tell me that my Phosphate levels have come in a bit above normal. Normal max level is up to 1.5. I was at 1.6.
I do eat a good amount of cheese each day as well as about 50g of dark chocolate. In addition, have been nibbling on nuts as well. So if I just cut down on these 3 food items could I see myself going back to the normal range?
Neph wanted to prescribe calcium binders but I suggested I adjust my diet first to see whether that might work. I was once 1.53 in early 2015 but that was when I was eating a ton of dairy and I have been normal ever since.
Could this one just be a fluke?
Which phosphate binder is the best one to take anyway? I've heard that these meds are horrific by way of side effects.
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I have not had a bad experience.
I started with calcium acetate but that made my calcium creep up so I switched to aurixiya (sp?). That has managed the labs well.
Only problem .... it also helps with iron and my stool is jet black. Freaked me out the first time I saw that!!! :oops;
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I also have not had too bad an experience. I use Renvela. I am more constipated these days but not too bad. I do urinate so I am drink a lot still so I don't know if that makes the binder effect softer on the body better.
That being said it would be good to experiment on your diet well you have more time to mess with things. It will be harder to say no to binders so you can mess with your diet when its even more elevated. So I would suggest you first focus on the food and move to the binders once you have tried to control it via diet - assuming you are strong enough to do that.
Personally I moved to the binders and didn't really focus on diet changes. I expect that will make the kidney friendly diet change a bit harder once I loose all my remaining kidney function which makes life easier now...
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I copied this chart from webMD As you can see there are two measuring systems used. This explains my immediate confusion with your posted number. My labs use the mg/dL system so I am used to seeing the larger number. Same thing, only different.
Phosphate in blood 1 Milligrams per deciliter (mg/dL) Millimoles per liter (mmol/L)
Adults: 2.7-4.5 0.87-1.45
Children: 4.5-5.5 1.45-1.78
Newborns: 4.5-9.0 1.45-2.91
Your results are slightly above the general maximum. This wouldn't necessarily worry me as I have also gone 'high' a few times over the years. Most often as a result of eating a high phosphorus meal in the day or two prior to the blood drawn for the test. I do have a bunch of bottles of the Renvula binder as every time I had one of those 'higher' labs my Neph would prescribe binders and pharmacy would send them right out. I rarely use them, unless I KNOW a particular meal is high in phosphorus.
Watching your diet a bit and I would expect your next set of labs to come back much like your 'normal' labs. But know you will eventually need to pay much more attention to phos and we both will become reliant on taking binders to keep our phos within range. Just not yet today, Thankfully.
I am fortunate in that I still have a little remaining kidney function. I believe this is helping my phos control, but I cannot count on that always being so. I have a copy of the AAKP Nutrition Counter, the booklet from the American Association of Kidney Patients that lists many pages of foods, and the Na, K, Phos, Protein, Fat, Sat. Fat, Carbs, and Calories for each of a great number of foods. A very informative chart that many should consider looking at and have available to consider if, or how many, binders to take with meals. I am learning. This chart is available for download somewhere on the aakp.org site. I posted that link in another thread somewhere that was also discussing this issue. Sorry, I don't recall which thread.
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From what I understand (and I could be wrong), just the ability to urinate doesn't remotely guarantee that you are clearing solutes (inc. phosphorus). I've been told that residual renal function (RRF aka peeing) is mainly useful for regulating fluids. I still pee about 1800ml/day (that's on the high end of normal range) and that doesn't remotely clear the toxins or regulate electrolytes-- enough.
I take Renvela, but this month my phosph. hit 5.0 so I'm upping my dose which kills me because they are so expensive and last year threw me in Medicare's donut hole.
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Athena, I think there is a very good chance that you can get your phos back into the normal range if you cut out cheese altogether. I remember I would always decide whether or not a particular food was "phosphorus worthy" (reminiscent of a Friends episode when Phoebe had to decide whether or not a potential boyfriend was "sponge worthy"), and I always decided that no, no food was phos worthy. Not in the least. I personally couldn't be bothered with worrying about whether just this one little bit of this one little phos-food would be a problem, so I didn't have a problem foregoing cheese, nuts and chocolate altogether. Anyway, give it a try before you begin binders; I think you have the right idea.
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From what I understand (and I could be wrong), just the ability to urinate doesn't remotely guarantee that you are clearing solutes (inc. phosphorus). I've been told that residual renal function (RRF aka peeing) is mainly useful for regulating fluids. I still pee about 1800ml/day (that's on the high end of normal range) and that doesn't remotely clear the toxins or regulate electrolytes-- enough.
Absolutely correct. I peed plenty but still had trouble with potassium and phosphorus clearance and had to use meds to balance those levels.
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From what I understand (and I could be wrong), just the ability to urinate doesn't remotely guarantee that you are clearing solutes (inc. phosphorus).
My point with urinating is I wonder if helps my digestive system and possibly helps prevent side effects of binders. I consistently assume that some of the reason why I deal very well with dialysis is residual kidney function and urination as well as my overall good health.
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I was under the impression that the 1 Jan 2016 Medicare change placed a requirement on the treating clinic to provide all renal related medications. Yet I still see a number of people are still paying for their binders. I looked up CMS and using their system submitted the question if binders should be included and provided by the Dialysis Clinic as they are a necessary medication in treatment of renal disease.
Hopefully I will get an answer spelled out which I will repost here.
Keep your fingers crossed!
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I was under the impression that the 1 Jan 2016 Medicare change placed a requirement on the treating clinic to provide all renal related medications.
That would be great! But I'm not holding my breath on that one.
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If you are taking Renvela you can go to their website and get a coupon and pay $5.00 for each refill for a year. There are a couple exceptions so look at their web site. It saved me about $150.00 the first time I used it.
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Thanks everyone for your very helpful replies. Has anyone heard of a type of chewing gum called renagum (?) or similar. I've been meaning to look that one up as a kind of preventative med. Apparently, it has a more natural type of ingredient, chitosan or something.
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Apparently, it has a more natural type of ingredient, chitosan or something.
Unfortunately, chitosan is derived from shellfish which are lethal to me. So be careful with it if you have a shellfish allergy.
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If you are taking Renvela you can go to their website and get a coupon and pay $5.00 for each refill for a year.
Unfortunately I just checked and if you have Medicare you're not eligible.
Patients filling prescriptions that are covered by or submitted for reimbursement under Medicaid, Medicare, VA, DOD, TRICARE, or similar federal or state programs including any state medical pharmaceutical assistance program are not eligible for this offer.
I have a Medicare Advantage plan. My 3 month copay is "only" $147 but the expense of the drug (nearly $3,000 for 3 month supply @6/day) throws me in Medicare's donut hole where I have to pay out of pocket for all my medications during the "donut" time. That will add up. So I'm really skimping on taking them and my phosph. level has gone up.
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I'm sorry to hear this K&S. How high is your phosphorous level now without these binders? Do binders do a good job in reducing levels as a general rule?
I'm thinking of trying them regardless of whether I go back to normal levels without them. I think I read a study somewhere that taking binders early can have a certain preventative effect on CKD. Which kind of makes sense when you look at it from the point of view of easing the kidney of the some of the burden of excreting minerals.
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My levels were in the normal range last month, and this month they are at 5.0. Not astronomical, but moving in the wrong direction. Binders do help maintain a normal phosph. level, but you need to take enough of them. And I've been cutting corners because of the cost issue.
I don't think I've ever heard binders spoken of as helping with the underlying CKD. They are a symptomatic fix. CKD is officially called Chronic Kidney Disease and Bone Mineral Disorder (BMD). That's where phosphorous comes in--with the BMD part. Too high a phosph. level eventually eats away at your bones and dispaces calcium in all the wrong places (arteries). Before dialysis I was able to control my phosph level with a single Tum per day. Now my calcium is too high to rely on a calcium based binder.
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No response from CMS yet. I better check my spam filter, it may have tossed it without me knowing.
My PD Nurse did call yesterday and she explained that although the Medicare change did place the requirement on our Clinic to provide renal meds, mmedicare also published a list of those meds. I have not found a copy yet. Renvula and cinicalcet/sensipar both are NOT on that list. Figures, I take both of those.
About all we can do is Hope that Medicare makes these additions to the med list. I don't know if they have a set schedule of reviews.
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Well I failed the new phosphorous challenge :oops; I ate a mozzarella cheese and salad Subway roll today and had 6 cubes of dark chocolate afterwards. But I hadn't eaten cheese & chocolate for 2 days prior to this.
Does anyone else imagine their kidneys as organs with a personality? I somehow am starting to imagine they're looking at me with a very stern troubled expression on their 2 faces.
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I don't feel that my kidneys are judging me. But do give signals of my transgressions. But only with blood work. Without the testing, you wouldn't know (until too late) that your bones are disintegrating and that your arteries and blood vessels are calcifying. Cheese and chocolate are definitely 2 things to stay away from unless you can eat just one small square (1") of 85% cacoa dark, high phenolic chocolate/day for medicinal purposes. Not is you're a chocoholic. Then it is best to go cold turkey.
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Without the testing, you wouldn't know (until too late) that your bones are disintegrating and that your arteries and blood vessels are calcifying. Cheese and chocolate are definitely 2 things to stay away from unless you can eat just one small square (1") of 85% cacoa dark, high phenolic chocolate/day for medicinal purposes. Not is you're a chocoholic. Then it is best to go cold turkey.
Well that's sure a way to put it into perspective for me, K&S! Thanks. The chocolate has been put back in the pantry as of today.
I think I should not delay in getting myself some binders. Here, Nephs can't prescribe it unless the patient has symptoms of elevated phos. I think I qualify for a script now. I shouldn't have argued with the Neph when he was ready to write one. If I start taking binders early, will they allow me to eat a fairly normal diet - which for me includes lowered salt cheese, dark chocolate, nuts & some yogurt.
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If I start taking binders early, will they allow me to eat a fairly normal diet - which for me includes lowered salt cheese, dark chocolate, nuts & some yogurt.
If you have unlimited funds, you could probably "cover" most of your deviations from the recommended renal diet. Except for Tums (which can have serious consequences when too many are used) most of the decent non-calcium binders are verrrrrrrry expensive, and they don't bind much phosphorous. If I recall, each Renvela pill binds up only 77mg of phosph. That's not much. A small piece of cheese (1oz) contains the following mg. of phosph.: Brie=52.6; Cheddar=143; cottage=44.5; feta=94.4; cream cheese= 30;mozzarela=130. etc.
It adds up. I do eat the occasional feta (goat or sheep milk) and I remove the abundant salt by soaking it for several days in water. I actually prefer it that way as I can actually taste the cheese, and not just the salt.
Nuts are another issue. There is some question about how much of their phosph is bioaccessible due to the presence of pjytates. That being said, i'm very careful with them. I used to eat a lot of nuts. Now I eat about 10 macadamias/day, spread out. They're the lowest in phosph.
You should bookmark sites like http://nutritiondata.self.com and https://ndb.nal.usda.gov/ndb/search where you can learn about what different foods contain.
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Bookmarked both. I really like the search feature found in the first link. Not knowing what foods contain this is neat to simple check off what we want as well as what we don't want in an item, and it gives a whole list of foodstuffs that fit those parameters.
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I've had decent luck in using Tums as a binder. I wouldn't recommend it as a long term solution - definitely discuss it with your neph - but when I'm between prescriptions it's better than nothing.
I love cheese. I love all dairy. That's been a struggle for me over the past few months. I've gotten to a good place where I let myself have two days a week where I can ease up on those restrictions and eat cheese with my eggs or have some chocolate. Moderation in all things.
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Athena, I think there is a very good chance that you can get your phos back into the normal range if you cut out cheese altogether. I remember I would always decide whether or not a particular food was "phosphorus worthy" (reminiscent of a Friends episode when Phoebe had to decide whether or not a potential boyfriend was "sponge worthy"), and I always decided that no, no food was phos worthy. Not in the least. I personally couldn't be bothered with worrying about whether just this one little bit of this one little phos-food would be a problem, so I didn't have a problem foregoing cheese, nuts and chocolate altogether. Anyway, give it a try before you begin binders; I think you have the right idea.
I've just had a good laugh about the "sponge worthy" analogy - I think Elaine in Seinfeld may have been the first comic character to use that line, btw!
My only problem with cutting out cheese is that I have pretty much given up on eating animal protein at dinner time, so guess what? Cheese has become like a staple food item to replace the meat. If no cheese then I'm going to be only eating breads or pasta with salads and vegetables. I eat the lower sodium cheeses like mozzarella and swiss cheese only.
Nuts are great for diabetics due to their low carb nutritious content and you can nibble on them endlessly without getting into trouble. But, again, it's a kidney no-go zone.
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If I start taking binders early, will they allow me to eat a fairly normal diet - which for me includes lowered salt cheese, dark chocolate, nuts & some yogurt.
If you have unlimited funds, you could probably "cover" most of your deviations from the recommended renal diet. Except for Tums (which can have serious consequences when too many are used) most of the decent non-calcium binders are verrrrrrrry expensive, and they don't bind much phosphorous. If I recall, each Renvela pill binds up only 77mg of phosph. That's not much. A small piece of cheese (1oz) contains the following mg. of phosph.: Brie=52.6; Cheddar=143; cottage=44.5; feta=94.4; cream cheese= 30;mozzarela=130. etc.
It adds up. I do eat the occasional feta (goat or sheep milk) and I remove the abundant salt by soaking it for several days in water. I actually prefer it that way as I can actually taste the cheese, and not just the salt.
Nuts are another issue. There is some question about how much of their phosph is bioaccessible due to the presence of pjytates. That being said, i'm very careful with them. I used to eat a lot of nuts. Now I eat about 10 macadamias/day, spread out. They're the lowest in phosph.
You should bookmark sites like http://nutritiondata.self.com and https://ndb.nal.usda.gov/ndb/search where you can learn about what different foods contain.
Thanks K&S for all the wonderful tips you have given in this post. I have bookmarked the 2 sites you have provided. Thanks!
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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!
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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).
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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?
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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).
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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.
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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?
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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.
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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.
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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.
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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
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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?
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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.
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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.
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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.
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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.
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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.
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That's fantastic!!! :2thumbsup;