I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Ken Shelmerdine on August 01, 2008, 05:39:49 AM
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No matter how I try I can't for the life of me remember to take my binder tablet as often as I should. I'd estimate that I miss taking it 50% of the time and by the time I do remember it's too late after I've eaten. My home sister says my phosphate is too high (2.09) and I deperately want to be able to remember to take them. I'm not asking for advice, I've tried everything and getting this right is purely down to me. I'm just having a rant at myself really :rant;
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I know you said you don't want advice, but that's never stopped me giving it :rofl; just a suggestion (and you've probably tried it) but can you put them by something you use at every meal - such as in the cutlery drawer or by the kettle or something, just to jog your memory................sorry, sometimes I can't help trying to be helpful, I'll go away now and annoy someone else ;)
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lol, my feeling is if ya don't want advice, don't post, cuz we are just full of advisers here. I eat in one of two locations - in front of the tv and in front of the computer. I have a bottle of Phoslo at each location. Like you, I still don't remember to take them about 50% of the time, but the one day I always manage to take them is the day before my lab draw. And if it goes up I always seem to know the reason why (oh, yeah, I had 2 pieces of fat free cheese as a snack and forgot to take a binder).
I'm also confused as to why 2.09 is too high. I just copied this from the Kaiser test lab results as normal = 2.7 - 4.5 mg/dL Sounds more like you're too low. Be sure and keep us posted.
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My family has a code word. When we sit down to a meal together, one will say "Blue" (because the Phoslo capsules were blue). That's my binder reminder. I didn't like having someone always ask me 'Did you take your pill?'. It made me feel like a child. But, for some reason, the one word codeword really helps. My tablets are now white since I've moved on to Fosrenol, but the codeword remains "Blue".
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lol, my feeling is if ya don't want advice, don't post, cuz we are just full of advisers here. I eat in one of two locations - in front of the tv and in front of the computer. I have a bottle of Phoslo at each location. Like you, I still don't remember to take them about 50% of the time, but the one day I always manage to take them is the day before my lab draw. And if it goes up I always seem to know the reason why (oh, yeah, I had 2 pieces of fat free cheese as a snack and forgot to take a binder).
I'm also confused as to why 2.09 is too high. I just copied this from the Kaiser test lab results as normal = 2.7 - 4.5 mg/dL Sounds more like you're too low. Be sure and keep us posted.
Not every country uses the same lab assay as the US. The numbers run differently in Canada and England.
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Snap Ken ! Maybe we should tie a knot in our necks ! :rofl;
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binders, binders, binders... Marvin's been struggling with them for 13 years now. Like peleroja, we have bottles of PhosLo everywhere -- one in the kitchen by the sink, one on the kitchen table, one beside his recliner in the den, one on the lab table in his home "clinic," one in my pocketbook, one in my best friend's pocketbook, one in Marvin's car, and a small "holder" on Marvin's keychain. When he has his PhosLo prescription refilled, we keep the old bottle to use again. When we get a new prescription, we add some to each various bottle.
Also, I am his "nagger" -- every meal, every snack, just about every time he opens his mouth, I'm saying, "PhosLo!" He said it doesn't bother him that I remind him every time and that he appreciates my remembering it (because he usually doesn't). Sometimes, I do feel like I'm treating him like a child, but...what am I to do?
Marvin's phosphorus level is good -- or within "normal" range.
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Try wearing a paper clip on your nose and the only time you can take it off is when you take your binders. It worked for Kevno!!!
:rofl;
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My binder is Fosrenol 1000 MG with each meal, Neph. said I could take it 30-45 min late and still be effective. Still it's like chewing CHALK.
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I was taking Tums as my binder and what I had to do was go buy a bottle for the kitchen counter, a bottle for the living room coffee table, a bottle for beside the bed and a bottle for inside the car. I also bought a couple of small rolls to keep in my purse! Tums, Tums everywhere! My Neph told me last week to stop with the Tums. My Phos. is within range, but my Calcium was high! oops!
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I also have them allll over and I really don't mind being reminded because I do forget....so nag me....gotta love that chalk... :puke;
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You are not alone with forgetting to take binders. I am bad, too. I have a bottle in the desk at work, I have a bottle on the counter in the kitchen, my hubby carries binders in his bag for me, and I have them in my purse. One would think I would take them if they are around me!
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I'm glad to see I wasn't the only one who couldn't resist giving advice when it wasn't asked for :rofl; :rofl;
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Ken
Just take advice from your picture....
Cover your :sir ken; as much as you can. We are not perfect, but who is?
:waving; <------ NO NOT EVEN HIM!
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I am a mess with binders. I used to take Phoslo, and now take Tums, but i am bad. I have bottles of Tums everywhere and yet I take them about 3 days out of the 30/31 in a month. However, I have been eating much less, and staying away from the high phosphorus items, and my blood results have been quite good for the last 3 months, but the calcium is a little on the low side.
Now is there someone who will volunteer to call me when I am eating to remind me to take my binders?
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I had no problem with Phoslo but now Fosrenal I WANT to forget..hate that stuff. :puke;
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I'm on Renegel 800 and this stuff is GOLD!!! Absolutely fantastic for me. My phosphate is almost always under 1.0 now (0.99 last lab) and the calcium is finally at the right spot. It's been a real godsend for me since I've started taking it in March. Highly recommended from this little black duck, and I don't have to chew it like Caltrate so it just goes down easy as.
Yes, I forget to take mine every so often and that's a bugger, but I think since it's so effective if I miss one or two it's not such a big deal for me. I just am sure to take it next meal and no worries.
What I do is have a supply with me at work so when I go out at lunchtime I take one with me to have with it.. and if I forget usually I am back in the office within 30 mins so just have it then. It usually works :)
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Thanks for all your advice everyone. When I said I didn't want any I thought that I'd tried everything but there's some ideas from your posts which I haven't tried so thanks for ignoring my request. I think I'll try putting tubs of them in a few different rooms in the house and in my car as suggested and see if that makes me remember to take them. :thx; :waving;
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Be sure to check your label to see if there are any notes aboute temperature. The car gets pretty hot, so it might not be a good idea to keep one there.
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Not sure if this would be practical for you, but at the IHD meeting I was given a 7 day, 4 segment (AM,Lunch, Dinner, PM) pill container with a alarm clock. I think it was Paris who got it for me.
So what are all the binders available? I know my doctor is thinking of putting me back on one in order for me to eat something I like that I stay away from due to lab levels. I was on Phoslo while on dialysis, but those are almost horse pills and hard to take. Which ones are easier for you to take?
I know theres:
1. Phoslo 3. Renagel
2. Tums 4. Caltrate? (trying to remember from post above)
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I've been fortunate enough to keep my phosphorus levels under control without binders. I do know that there are some new ones out there. At my center, they let the pharmaceutical sales reps visit with the patients individually and there have been two or three in the past month who were pitching new phosphorus binders.
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There is also Fosrenol. They are chewable. I used to be on PhosLo, but my calcium was too high. Fosrenol has worked terrific for me - no problems with Phosphorous at all. As a matter of fact, last month they said my phosphorous was too low! LOL! I am back to drinking some diet Pepsi. Anyhow, many people complain about the chalkiness of the Fosrenol, it makes some people gag. I have never had any problems with it. Yes, it's chalky, but no big deal for me. They are huge, though. 1000mg for me - they are about the size of a reaaaaaalllllly thick quarter.
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I'm on those, too. I'll deal with the chalk, as long as it lets me eat cheese, peanut butter and chocolate!
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When you say chalky taste, is it medicine taste? Then again you mentioned it was the size of a quarter. The smaller the better and less nasty tasting the better. However Tums in fruit flavors is ok, but those caused some sort of problems I can't remember years ago.
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Hubby was taking renagel when he was in center. It worked really well. Phos was always in the normal range. Now that he does nocturnal home hemo no need for any binders. He can eat whatever he wants and phos is fine!!!
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When you say chalky taste, is it medicine taste? Then again you mentioned it was the size of a quarter. The smaller the better and less nasty tasting the better. However Tums in fruit flavors is ok, but those caused some sort of problems I can't remember years ago.
No, no mediciny aftertaste. They are just bland and have this awful texture when you chew them. Tums are high in calcium, so if you have to take too many, that may cause other problems. Fosrenol has no calcium in it.
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I do not have to take binders anymore b/c of that parathyroid surgery
I'd rather still be on binders
I have not felt good since the surgery
calcium is low
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Tums will actually raise your calcium.
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On a side note.......I have been on Fosrenol for about six weeks and I finally made a connection I think. My tongue burns as if I don't know but constantly just burns and I think it is since the Fosrenol started...I take it after a meal and very seldom anything for quite a while after. Does anyone else have this problem?
Ann
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Rolando uses Fosrenal and Renagel. He sometimes forgets to take them, but not very often. I usually set out what he should take all day first thing in the morning. He usually remembers. If not I ask why there's so many still left. We are usually out when we forget them.
For all of you who are unhappy with the taste and consistency of Fosrenal, try our recipe. It's posted elsewhere, but here it is:
Crush up the Fosrenal and mash it together with a little bit of banana and chocolate syrup - Chocobanana Fosrenal goes down easy. Fosrenal is very effective for Rolando so it's worth the greater effort (he cannot take it dry without choking).
G-ma, if the burning tongue is an effect from direct contact with the Fosrenal particles that seem to take forever to clear from your mouth, our recipe goes down quick and the particles are contained.
Alene
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Otto also has been really bad and his labs went up he's at 7.1 :oops; but no one told him to take them also with snacks.
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So what are all the binders available? I know theres:
1. Phoslo 3. Renagel
2. Tums 4. Caltrate? (trying to remember from post above)
I was taking Phoslo until about 3 weeks ago and I noticed it was making my nausea to the point where I would eventually throw up. For a while, I just ignored it thinking it was something I ate but it was happening everytime I ate. So, I talked to the dietician and she switched me to something called, Renvela 800 mg and it has worked great for me so far. So, that is one that I have not heard anyone mention. Has anyone else heard of it though?
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there's a recent thread on Renvela:
http://ihatedialysis.com/forum/index.php?topic=9497.0
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Thanks Alene, I am going to try your choco banana treat and see if it works.
Ann
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I do not have to take binders anymore b/c of that parathyroid surgery
I'd rather still be on binders
I have not felt good since the surgery
calcium is low
i don't understand twirl, binders are for phosphors and parathyroids have nothing to do with phosphors.
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Parathyroid hormone regulates calcium and phosphorus , so I imagine that she can't uptake much phosphorus anymore.
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According to EndocrineWeb.com:
The sole purpose of the parathyroid glands is to control calcium within the blood in a very tight range between 8.5 and 10.5. In doing so, parathyroid glands also control how much calcium is in the bones, and therefore, how strong and dense the bones are.
8)
http://www.endocrineweb.com/function.html
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Of all the things about helping my husband navigate life when he was on dialysis, I found the calcium, phosphorus, vitamin D, PTH interactions to be the most confusing. I just tracked this down and it seems pretty readable:
Calcium, Phosphate and Vitamin D Balance to Maintain Bone Health
"The kidneys play an important role in maintaining healthy bone mass and structure because one of their functions is to balance calcium and phosphorus levels in the blood.
Calcium is a mineral that is mainly stored in bones. It helps to build and strengthen bones. Phosphorous is also a mineral, which is important for healthy bones. It usually presents as phosphate salt in the body. Both calcium and phosphorus must be in balance in the blood to maintain bone health. Healthy kidneys remove excess phosphorus from the blood. When the kidneys do not work normally, phosphorus levels in the blood can become too high, leading to lower levels of calcium in the blood.
If calcium levels in the blood become too low, the body’s parathyroid glands release a hormone called parathyroid hormone (PTH). This hormone draws calcium from the bones to raise blood calcium levels. Too much PTH in the blood will remove too much calcium from the bones and eventually this weakens the bones.
Healthy kidneys produce an active form of vitamin D to help the body absorb dietary calcium into the blood and the bones. Vitamin D and PTH work together to keep calcium balance normal and bones healthy. If active vitamin D levels drop too low, PTH levels increase, and calcium is removed from the bones. In a patient with kidney failure, the kidneys stop making active vitamin D. The body then cannot absorb calcium from food and starts removing it from the bones."
http://www.msn.org.my/pdf/ENGLISH_PHOSPHATE%20GUIDE.PDF (see page 7. This is a food guide put together by the Malaysian Society of Nephrology, and includes a bunch of very interesting looking foods) I wonder if our Malaysian IHD member has seen this...
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According to EndocrineWeb.com:
The sole purpose of the parathyroid glands is to control calcium within the blood in a very tight range between 8.5 and 10.5. In doing so, parathyroid glands also control how much calcium is in the bones, and therefore, how strong and dense the bones are.
8)
http://www.endocrineweb.com/function.html
http://en.wikipedia.org/wiki/Parathyroid_hormone
PTH reduces the reabsorption of phosphate from the proximal tubule of the kidney[6] which means more phosphate is excreted through the urine.
However, PTH enhances the uptake of phosphate from the intestine and bones into the blood. In the bone, slightly more calcium than phosphate is released from the breakdown of bone. In the intestines, which is mediated by an increase in activated vitamin D, the absorption of phosphate is not as dependent on vitamin D as is that of calcium. The end result is a small net drop in the serum concentration of phosphate.
;D