I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Epoman on February 21, 2006, 12:22:32 PM
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I am now trying yet another >:( Phosphorus binder to see If I can remember to take this one. ::) It's supposedly better than Renegel or others. But the problem is it needs to be chewed, it really just tastes like chalk. it's a fairly good size tablet. I use the 500mg size. I was worried because I read literature about the biggest side effect is nausea, but so far I have had no symptoms.
I will post here to let you guys know if I see any improvement in my PH lab results.
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I am using this but it also comes in a capsle form. They are pretty big too but them seem to be working.
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I am using this but it also comes in a capsle form. They are pretty big too but them seem to be working.
??? Capsules they need to be chewed. I checked the Fosrenol website and they do not make capsules only chewable tablets.
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you are right, I made a mistake. I tried the fosrenol and hated the chalkly taste and how hard they were to chew so they let me try this Phoslo that now comes in capsules. My phosphoros has always been out of control up to 15 hovering around 10-12 most of the time taking the Phoslo has been steadly bringing my levels down to now in the 7's for the last week and going lower. I have made no diet changes as I like to eat fruit, chocolate, and most bad things including milk.. whole milk! there are two of us in my unit who have had the same difficulties and he is responding well to the phoslo too. I hate chewing on those binders the capsules go down much eaiser and I find I can remember them better because it is like a med not the over th counter tums they made me try for so long. I suggest you give them a try. Sorry for the mistake but I hope you give phoslo a try it helped me. I am aiming at gettig my phosphoros under 5 in the next two weeks wis me luck.. I just started a full time job so carrying around all these pills becomes a nightly chore to put them in my bag and make sure they are with me at all times so I can take them even with snacks.
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you are right, I made a mistake. I tried the fosrenol and hated the chalkly taste and how hard they were to chew so they let me try this Phoslo that now comes in capsules. My phosphoros has always been out of control up to 15 hovering around 10-12 most of the time taking the Phoslo has been steadly bringing my levels down to now in the 7's for the last week and going lower. I have made no diet changes as I like to eat fruit, chocolate, and most bad things including milk.. whole milk! there are two of us in my unit who have had the same difficulties and he is responding well to the phoslo too. I hate chewing on those binders the capsules go down much eaiser and I find I can remember them better because it is like a med not the over th counter tums they made me try for so long. I suggest you give them a try. Sorry for the mistake but I hope you give phoslo a try it helped me. I am aiming at gettig my phosphoros under 5 in the next two weeks wis me luck.. I just started a full time job so carrying around all these pills becomes a nightly chore to put them in my bag and make sure they are with me at all times so I can take them even with snacks.
Oh yeah I tried Phoslo but I would have to take like 7-8 of of those darn things, I have been on everything. I used to use Basagel now those worked great I was on them for years but now they are banned in the USA do to aluminum content. They found that they could caused brain damage by the aluminum going to the brain. Now they tell me ::)
I just started the Fosrenal so we'll see how it goes. I hate the chewing factor but supposedly they are the best right now for PH absorbtion. Plus I would only have to chew 1 maybe 2.
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chewing on those fosrenol was like chewing on rocks and taste like shit, I like the phoslo I take three right after or during meals. Been working so far as I remember to take them which is where I get myself in trouble I forget to take the other stuff probably cause they taste so bad to me. you and I have similar issues it souds like with phosphorous. My doctor told me she has seen people die with levels as high as mine were and then showed me the pictures of the open calcium wounds that scared the hell out of me. Forgive me for being gross but she showed me a picture of a penis that was so discusting that I had nightmares and decided it was time to do something about it. I mostly itch on my arms and stomach sometimes opening up sores it is really scaring me I want to get this under control ASAP.
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My Phos is bad too. They put me on Sensipar. It is supposed to shut off my parathyroids so they don't send signals to my body to take more calcium out of my bones to match the high level of Phosphorus. We'll see if it works. I love milk, skim, 1%, 2% and Whole! I have given up all but one 8oz glass in the morning. Geez you would think it was the last glass I would ever drink if you watched me. I savor every drop. When I have my transplant I drank a gallon a week! No wonder I was fat! :-X
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I take calcium 500, came off renagel, plus ALU-caps. My phos is still high so the docs have upped my calcium 500 to 12 a day. 3 x 4 they are not that big, smaller than a 802mg renagel tab. Never come across FOSENOL maybe it has not got to the UK yet. I have just been put on a New kidney, sorry dializer. called a fx60 before I was on a fx6. It is suppose to take out a bit more phos. Will have to wait and see if it works.
Kevno
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I was prescribed Phoslo when I first started dialysis, but they cost too much here. Another patient told me that her doctor prescribed Tums and it works for her. That is what I have been trying (when I remember)
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I started it last month. I don't mind the taste but damned it get stuck in the teeth and I am chewing little particles of it all day long. Icky! Not bad. I am awaiting results for this months phosphorus levels to see if they work for me. I had a lot of nausea with them at first. But that has gone away. Now I just do not want to eat anything. When I do eat and take it, the food seems to stick around longer and I need longer times between meals. Interesting.
Katherine
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I started with Tums, but told the Neph that I would like to try Fosrenol. The first I received was with a patient program, now all that has changed the first of the year. My labs are very good, phos is in the good range. Like the taste and don't mind chewing, my worry now will be cost >:( BTW The I Hate Dialysis golf shirt is super, I wear it to the center ;D HUGZ Woody
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I used to take phoslo but my blood calcium levels went too high so they switched me to renagel. I have to take 4 pills per meal. Chewing chalky tablets while I'm trying to eat does not sound good to me. My appetite ain't so great to begin with. So I'm happy that my phosphorous is under control with renagel but then I don't eat a lot of dairy either just a little cheese o something once in a while.
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Eating like a pig now. Oink Oink! However the phosrenol gives me the burps after eating. I can now belch with the best of them! Buuurrrrack! Buuuruuuppp! Does this happen to anyone else? I usually take it after I eat or with the last few bites of my meal. I found if I took it before I ate, I felt like throwing up constantly. I am also farting pretty good, too. Luckily this stuff does not bind me up like other drugs did, nor does it give me diarrhea. I can sure fart up a storm lately. My phosphorous is in the six to seven range and stays there pretty much. I would like it to go into the five range, but so far no go. Of course if I followed the rice cake and no water renal diet it might go down more!
Katherine
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Wow you all seem to of had a bad run with phosphate!! Geoffcamp...a level of 15....all I can say is :o
Mine was up a little until I went onto nocturnal. Its now normal and the best part is we don't need the binders and can have milk, cheese, chocolate etc. I just had a kinder beuno mmmmm!!!!
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I am supposed to take (chew) 2 Fosrenol's with every meal. Since starting PD, i eat once a day, (gotta have my protein) but my phosphorus is still up. I told my dr. i take 2 with my meal and thats it, he told me i need to take them even if i dont eat? has anyone else heard of this? i thought you needed food to "bind" with the med? I too, had trouble getting used to them so what i did is i consider them my "after dinner mint" then after i chew that, i throw a mint down my throat. lol, Me gotsta do what me gotsta do.....
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I haven't heard of forsrenol before but my dietition told me the most effective way to take binders is immediately before you eat. This way the food falls down onto the binder. If you don't eat, then there is no point taking a binder.
Goofynina, a couple of questions for you..... do you only eat once a day because of nausea? Perhaps if you eat a bit more, along with binders, it might bring your phosphate down. Have you had a dialysis adequacy test recently? How many exchanges do you do per day?
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I am now trying yet another >:( Phosphorus binder to see If I can remember to take this one. ::) It's supposedly better than Renegel or others. But the problem is it needs to be chewed, it really just tastes like chalk. it's a fairly good size tablet. I use the 500mg size. I was worried because I read literature about the biggest side effect is nausea, but so far I have had no symptoms.
I will post here to let you guys know if I see any improvement in my PH lab results.
I think you may want to check the fine print on that one. :o
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What fine print Zach, you got me worried now...
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We just need to understand the benefits vs. the risks of the medications we use --whether it's for the transplant patient or the dialysis patient.
All phosphate binders have potential risks, we just need to stay informed and make the best choice for our individual needs.
I struggle with this all the time.
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A patient told me that he took his fosrenol, put it in a baggie, hit it (...softly) with a hammer, then sprinkled it on his food. He said he never tasted it or noticed the chalky texture that way.
But it is expensive, but not as expensive as renagel.
The hardest problem is convincing people that they don't work while in the bottle....they have to be actually taken to work! >:D
I tend to give more people phoslo now. It is cheaper and you get less calcium absorption than tums. You could also combine sensipar with phoslo if you have good phos control but the calcium is too high. But then the cost factor comes back into play.
So basically.....no easy answer..... ???
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When competition in the phosphate binder industry comes, can better information be far behind? ;)
(for all you fans of Percy Bysshe Shelley)
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1) The competition is here and heating up.....All three big players are starting to slug it out.....Phoslo, Renagel, and Fosrenol.
2) I missed your reference.....please explain (....sorry if I am a dumb-ass in terms of a literature reference, or something similar) :P
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When competition in the phosphate binder industry comes, can better information be far behind? ;)
(for all you fans of Percy Bysshe Shelley)
"When winter comes, can spring be far behind?" is a quote from Shelley.
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The hardest problem is convincing people that they don't work while in the bottle....they have to be actually taken to work! >:D
Good point! ;)
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Yeah I know you have to take them for them to work, but with only a half hour for lunch, then back into it with the 6th graders I teach, sometimes I forget. Plus the taste and the heartburn I have after I take it makes it hard to swallow in my mind. But I do take them when I remember to and am trying to be better about it. I am going to pack it in my lunchpail from now on and just add it to lunch I pack into school.
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I hate to discuss this openly like this but i would like some advice as well, I am on Fosrenol and there have been a couple of times where i have thrown up what i just ate after trying to chew and swallow these damn pills, it doesnt happen all the time, but it's almost like i upset my stomach so much in the middle of the meal just thinking i have to take them that by the time i do take them, i am just so grossed out, up they come, i didnt have that problem in the beginning, but it seems like the more i take them, the harder it is for me to get them down. I was on Renagel to begin with but because my phosphorus was always running high, they switched me to this, but, i never took my renagels faithfully so i am hoping to talk to my nephrologist and see if can try either renagels again or phoslo, i swear under oath your honor, that i Susan (Goofynina) will take my pills faithfully if you please give me the chance :) (how did that sound?) pathetic enough? or needs a little more drama? i will work on it :) :)
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Pathetic but truthful. I, too, am bad about it. Just had lunch and took the Fosrenol like a good girl should. >:D Sometimes I just get sick of being sick!! Then I look at how patient my husband is and I say Geez! With all he has going on and he is still nice. I just cannot do it! I cannot be nice sometimes it is just too much. Stop me before I rant on! ;D
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From Shire, the makers of Fosrenol (lanthanum carbonate):
"... While lanthanum has been shown to accumulate in the GI tract, liver, and bone in animals, the clinical significance in humans is unknown."
There are always risks v. benefits. The choice is yours.
8)
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I take it, and renagel too. I like the taste though. I'm strange. No problems with nausea. Now the sensipar on the other hand makes me sick.