Binders are a no no !

[KICKSTART]

Apart from diet is there anyway to naturally lower your phosphate ? I just cannot tolerate binders , something in them makes me just  whenever i take them ..even Tums ! Also as a result of this my PTH is sky high and i dont want surgery! My neph knows it is but hasnt put me on any medication to lower it. I have been told that all it is, is vit D anyway, but has anyone taken it to lower their PTH without the neph prescribing it ?

[RightSide]

Tums are about as "natural" as you can get.  They're just calcium carbonate, the same material that's in eggshells, pearls, and chalk.

Why can't you tolerate them?  What happens when you take one? 

We ESRD patients can't hope to control phosphate without binders.  All protein-rich foods contain phosphate; going on a low-protein diet to control phosphate will simply add malnutrition to your list of other problems with which you must contend.

[sullidog]

I had side affects from the binders, but once my body got used to them now I can take as many as possible and not get sick. You have to have the binders, but maybe you need to try different kinds to see what works better for you.
Troy

[rocker]

We ESRD patients can't hope to control phosphate without binders.

I am told that the first medication adjustment when a patient starts nocturnal is to stop all phosphate binders.

I don't recall if you're on PD or hemo, but if hemo I would ask your neph about options for nocturnal.

[billybags]

KS, what binders are you on now? They upped Alan's a few months ago, he now takes three with a meal and one with, say a sandwich. He is still on renagel. All in all six a day.

[pdpatty]

I take one 1000mg Fosrenol with meals. I chew it up in the middle of meal and mostly never get sick.  My phos was 3.4 this month.( you need your own teeth to chew this horsepill up)They really have no flavor,just a chalky feel.

You really NEED a binder to controll the phos. If not,you can develope brittle bones(sorry,can't spell proper name for it).


PTH is high which increases calcium
I take 1 Sinsepar 30mg a day. They tried me on 60mg but I can not tollerate it. Got so sick which always ended in vomiting .

I cannot take Tums. In the amount needed to controll phos,it make me sick to my stomach.Not only that,they are calcium,if you have high blood calcium ,you shouldn't be using Tums.

[KICKSTART]

Thanks for all your suggestions guys but none of them are any good ..well not for me!
Before anyone asks , i have taken EVERY binder known to man and was also one of the first people to take a brand new binder just out a few months ago. No matter if i take them before/after/during a meal ..i just end up throwing up ! So it gets to the stage of eat and be dammed ,or stop eating and not be sick with the binders ..tough call isnt it ?
Rightside ..Tums may be as natural as you get, but i find i also dont eat eggshells, pearls or chalk ! Obviously calcium carbonate does not like my stomach.

[Zach]

Have you tried niacin?

[KICKSTART]

Zach , i have tried everything available in the UK . I have not even heard of niacin? It is possible its under a different name here , if you could find out if its called anything else and i havent tried it , i will certainly mention it to my neph. 

[Zach]

Niacin is vitamin B₃, also known as nicotinic acid.
Another form of niacin is nicotinamide, also known as niacinamide.

It's not as effective as Renvela (which now comes in a powered form to mix in food or drink), but it might do the trick.

There have been a number of studies on the phosphate lowering ability of niacin, usually in a time-released tablet.
It works differently than binders in reducing the body's ability to absorb phosphorus.

You should speak to your nephrologist about it.



Some studies:
Extended release nicotinic acid - a novel oral agent for phosphate control.
http://www.ncbi.nlm.nih.gov/pubmed/16502077

Niacin and Niacinamide for Hyperphosphatemia in Patients Undergoing Dialysis
http://www.medscape.com/viewarticle/583485

Binder Blinders—Niacin of Omission?
http://www.ajkd.org/article/PIIS027263860901590X/fulltext

[Riki]

I take Renagel and Calcium Carbonate, and had the parathyroidectomy in 2007-ish,  not taking binders will do more than just give you brittle bones, it can also turn your arteries to chalk, which I was told makes it hard to transplant you.  In fact, one of the nurses told me the other day that if I can't get my phosphorus level to go down, they could take me off the list.  I have what's called Hungry Bone Syndrome, where the bones soak up any calcium I take in, leaving very little for the blood.  It has caused trouble for me my entire dialysis life.

[KICKSTART]

Thanks Zach , will be straight onto it after the weekend 

[gothiclovemonkey]

I get nausea like really bad with binders, and constipation, my stuff is high too, dr threatened to do the surgery, i always get the funky side effects from all these stupid pills we have to take. I admit im terrible about taking them too. Not a very good patient, but im a firm believer in Quality of life, over quantity of life.

[Riki]

I have a hard time remembering to take them.  It's not malicious or anything, just poor memory. Forgetting to take them really doesn't do much for the the HBS or for binding, and I haven't been able to come up wit ha good system to remember to take them

[RichardMEL]

I just equate food with binder. So I want to eat something then I pull out the binders. I keep an emergency supply in my backpack in case I've forgotten them normally or I run out (I keep a jar at work and a jar at home so I've always got binders handy).

[Lupeyleo]

You're not alone.  I cannot take binders.  Revela, Renegall, etc...

I have to work.  All of them cause severe vomiting, severe dry heaves, extremely painful cramps located right behind my belly button, and the wonderful "runs".    This may be mean but I've told the doctor and the idiot dietician.. you take them.  Maybe I should quit working and functioning so I can take $%@$% binders.

[Riki]

Since you're starting PD, there is a solution you can get that has a higher concentration of calcium, which would help keep the phosphorus monster at bay.  If I were you, I'd ask the neph or whoever is doing your PD training about it

[RenalSurvivorDotCA]

My only problem with Tums was the taste. It made my entire meal unpalatable. Every bite tasted like Tums and i hated it, so didn't take them. My neph switched me to Renagel and that did the trick. No chalky taste. Eventually they had to add Magnesia pills also. Now they have also added Tums again, but only one per meal. Seems my calcium is low these days.

[RightSide]

I have a hard time remembering to take them.  It's not malicious or anything, just poor memory. Forgetting to take them really doesn't do much for the the HBS or for binding, and I haven't been able to come up wit ha good system to remember to take them

I have set up Microsoft Outlook's Calendar on my computer to remind me when it's time to take this or that pill, including the binders I take with my food.

You can also set up Outlook to forward notifications to your cell phone when you're away from your computer.

For myself, remembering to take the binders (Tums in my case) with my meals has become automatic, a habit.

It's all the other pills and capsules I have to take that sometimes slip my mind.  I'm now taking over FIFTY pills a day.  Thank goodness for Microsoft Outlook's Calendar!

[Riki]

My only problem with Tums was the taste. It made my entire meal unpalatable. Every bite tasted like Tums and i hated it, so didn't take them. My neph switched me to Renagel and that did the trick. No chalky taste. Eventually they had to add Magnesia pills also. Now they have also added Tums again, but only one per meal. Seems my calcium is low these days.

Ask about calcium carbonate instead of tums.  My calcium was so low at one point, I was taking 8 tums with eveyr meal, and I was just gagging on them.  They switched me to calcium carbonate.  It's just like taking another pill. It made it a lot easier to take, because I wasn't choking on the chalkiness of of the tums.

[RenalSurvivorDotCA]

It's all the other pills and capsules I have to take that sometimes slip my mind.  I'm now taking over FIFTY pills a day.  Thank goodness for Microsoft Outlook's Calendar!

RS- Yikes! Fifty pills a day! I guess i shouldn't complain about my pills.

Ask about calcium carbonate instead of tums.  My calcium was so low at one point, I was taking 8 tums with eveyr meal, and I was just gagging on them.  They switched me to calcium carbonate.  It's just like taking another pill. It made it a lot easier to take, because I wasn't choking on the chalkiness of of the tums.

Hmmm...I thought calcium carbonate = Tums? I'll have to check into this. I'd much rather swallow a pill than chew up some chalky Tums.

[Riki]

Ask about calcium carbonate instead of tums.  My calcium was so low at one point, I was taking 8 tums with eveyr meal, and I was just gagging on them.  They switched me to calcium carbonate.  It's just like taking another pill. It made it a lot easier to take, because I wasn't choking on the chalkiness of of the tums.

Hmmm...I thought calcium carbonate = Tums? I'll have to check into this. I'd much rather swallow a pill than chew up some chalky Tums.

baically tums is calcium carbonate, but the pills are probably easier to take, because there is no chewing involved... the dietitian at the IWK when I was a kid, actually tried chewing them, and she didn't recommend it. *L*  You can also get calcium carbonate pills with vitamin D added, which is a plus, since we have to take vitamin D pills anyway

[RichardMEL]

Calcium Carbonate? yuck. Prior to Renagel I had to take a combination of alutabs and caltrate, which is basically calcium carbonate.. but I had to crush the tabs in my mouth with the food, so got the whole chalky mouth experience. It was horrible. Thank God for Renagel(and that I don't have any reaction to it) because that stuff has saved me. It's easy to take those and it's automatic with food.

[Zach]

Calcium Carbonate? yuck. Prior to Renagel I had to take a combination of alutabs and caltrate, which is basically calcium carbonate.. but I had to crush the tabs in my mouth with the food, so got the whole chalky mouth experience. It was horrible. Thank God for Renagel(and that I don't have any reaction to it) because that stuff has saved me. It's easy to take those and it's automatic with food.

Yuck is right, RichardMel.

Also for some people on dialysis, Calcium Carbonate can raise their serum calcium too high (above 10.0) causing other problems.  It's a real balancing act!