I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Bajanne on June 20, 2006, 05:08:04 PM
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My nephro continues to prescribe Phoslo for me. However, it is very expensive here. My friend who started dialysis in the US uses Tums. I used it for a while, but I am about to get Phoslo back.
My problem, I think, is not the binder - it is remembering to take it.
Let me know what it is like for you.
Do people on PD need binders?
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hi bajanne, i am on PD and i still need binders, i currently take 2 HUGE GIANT chewable chalky disgusting with every meal and snacks. i have a small container on my table, on my counter and they even gave me a keychain to carry them. I just consider them an "after dinner mint" I usually have one in the middle of my meal and one at the end but i always save a bite of food for after i chew the last one to get the taste out of my mouth (that is if i dont have a mint to throw down my throat) PD allows a little more freedom on the fluid and the pottasium but not the phosphorus, at least that is what my dietician told me.
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Hi Bajanne,
I am also on PD. I take Renagel. 2 Big tabs with each meal and 1 with snacks (that is if the snack has lots of Phos in it). I have a large container on the table and a small bottle of them in my purse(for when I snack and am not at home). Sometimes if I know that I am eating too much phos at any meal will take 3 tabs instead of the 2.
On PD the diet is more liberal on everything except phosphorus!! Here in the US, Fosrenol is the most expensive as it is the newest, Renagel is next expensive, then Phos-lo and tums very cheap!
Ginger
PS--You really should remember to take your binders.
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Me too. I need to take the binders regularly. I have them in my purse, but at work I get so busy I forget.
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Ah yes, on P.D. and on H.D. (daytime) I had to take binders - originally 3x2 Caltrate tabs....then they decided my calc. was too high, so 3x1 Caltrate & 3x1 Alutabs. Caltrate are available over-the-counter in Oz pharmacies & are as 'cheap as chips' as we say here. I think when I bought them off-script a few times they were about $6 or $7 for about 60 tabs. So check out your pharmacies, Baj
I used to carry a small pot from a run-out script in my pocket with a day's worth of binders, plus one day's other tablets, in case I forgot to take them before leaving the house.
On nocturnal, all I take are Mult-B, B6 and ...the digestion tabs I've forgotten the name of. ;D
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Caltrate for me too, currently on four tablets three times a day, believe me having fun with that !
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I take both Phoslo ( 3 pills) and 1 Fosrenol chewable tab (1000mg) with my meals and have finally gotten my Phosphuros to a manageable level. I keep containers of each in my work truck , in my car, at home, and in my wifes purse ( probobly the most important place!)
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I take caltrate too. Aren't they horrible. BLAH....... Liz
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when I was at the clinic I had to take two tums before each meal but now on home nocturnal 6 days a week I have to add phosphate to my dialasate bath each run no more tums
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I started off on calcichew a powdery peach flavoured pellet. awfull things. I then told the dr I wouldnt take them as I would throw up my food every time, they moved me to Phosex you dont chew it and its lemon flavoured, I take 3 with every meal and 1 with a snack.... bearable.......
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Im not on any binders anymore, which is good because I always used to forget to take them. I had no trouble downing 3 horse pills at a time. After taking them for years and years I got used to it. I got caltrate on a script, it cost me $4.60 (now $4.70) for 120 tablets. I get all my pills for $4.70 except magnesium which is $9 for 50.
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ummmm Amber, can i have the name and number to your pharmacy, lol, i would love to pay those prices for my meds....
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Goofinya, its not the pharmacy, its the price we get them for when you are on a pension :)
And for those that you buy over the counter, we have a great discount chemist up the road. Most of the things are way cheaper than your usual chemist. For example, they have magnesium for $8.69, where as most others have it for $13.
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I'm on Renalgel and I take 2 tablet with meals and 1 with snacks and my Phos is still high. So they put me on sensipar which is supposed to shut down my parathyroids. We'll see.
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Doc said yesterday there is a new drug out to lower PTH. Cant remember the name, but there is only approval for 5 people to use it, and I may be able to take it. Wonder why they would only approve 5 people?? :-\
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I noticed that 2 people have voted in the section "What's a phosphate binder?" I didn't want to answer since my answer would be totally in layman terms.
What I understood is that there must be a balance between phosphorus and calcium in our system. If the phosphorus gets too high, the body tries to balance by taking calcium from the bones, which then leads to other complications. Phosphate binders bind the phosphate in our food so it can be eliminated and at the same time add calcium to the system.
Can someone more professional add to this, clarify it, correct it, or whatever.....?
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Hi bajanne2000, newbie AJ1963 here. I was in the test phase for Fosrenal in this area (S.E. U.S.A.) and I chewed four of those pieces of chalk with each meal. I'm on 4 Renagel per meal now and I like them much better.
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aMbEr79, are you talking about sensipar? I have a hard time keeping my phos down and my doc put me on one pill a day in addition to my binders.
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I was just watching and listening to a very clear tutorial concerning phosphate and the kidneys - a link from the website of our newest member 'angieskidney'. It showed me that I had got the general idea.
Now if I could only remember to take those things all the time!!
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I noticed that 2 people have voted in the section "What's a phosphate binder?" I didn't want to answer since my answer would be totally in layman terms.
What I understood is that there must be a balance between phosphorus and calcium in our system. If the phosphorus gets too high, the body tries to balance by taking calcium from the bones, which then leads to other complications. Phosphate binders bind the phosphate in our food so it can be eliminated and at the same time add calcium to the system.
Can someone more professional add to this, clarify it, correct it, or whatever.....?
LOL! I'm sure the two people who voted "What's a phosphate binder?" were being sarcastic. I know I was, I was one of them. >:D
;D
- Epoman
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aMbEr79, are you talking about sensipar? I have a hard time keeping my phos down and my doc put me on one pill a day in addition to my binders.
Im not sure, I really cant remember what he said. It may of been that :-\ I didnt see my normal doctor so I was a bit put out of whack, which annoys me. He usually sticks his head in for a sticky beak but didnt this time. Every time I see a new doctor I usually forget to get scripts, and they usually dont ask either, sooo annoying! Its pretty much your only chance to get them, unless you want to wait a few weeks. Thank god for the lovely Dx nurses, they gave me a bottle to tide me over.
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Now, now Epoman! A rap on the knuckles for that!
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I take 9 Renagel a day - 3 per meal. And we get them for free down here! In fact, we get all our medicine for kidney failure for free from the government and the dialysis, too. But in compensation, our clinics are in need of better quality.
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I take Tums
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My Doc gave me this plan on taking Phosphate Binders depending on what I'm eating.
So lets say I eat
Pizza (Very Bad) = 7 Pills
Coke ( Medium) = 3 Pills
2x Hamburges ( Not Too Bad) = 4 Pills
My Potassium is never high and the rest ist good just my phosphate WAS high now since I have this plan it's been very good!
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SpeedFlex, may i ask what binders you are on? and nextly, do you have trouble with constipation with all those pills? :o (sorry, just wondering) ;)
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WOW deej, I think I'm moving to Brazil! I wish we could get our meds free. ;)
My hubby takes 5 Renagel with each meal, but our insurance will only cover 100 pills a month at $101.27. >:(
So, sometimes the dietitian at the clinic will give him a couple of bottles to get him through, but she can't always do that. She did give him a bunch of Fosrenal but I can't get him to chew them up. He says they are gross. He is also on Sensipar, but until Rerun said they were to shut down the parathyroid I didn't know for sure what they were for.
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Hi Cayleighrose, Have you tried smashing the pills (i know they are big) i am on them also, but if you smash them good enough and put them in some applesauce, maybe he can take the fosrenol that way? just a thought :P
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Thanks bajanne, I will try that. He loves applesauce. :)
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SpeedFlex, may i ask what binders you are on? and nextly, do you have trouble with constipation with all those pills? :o (sorry, just wondering) ;)
No I have never had constipation cuz of my pills, maybe I'm just lucky.
Anyways they're called Calciumacetat ProRenal.
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Thanks bajanne, I will try that. He loves applesauce. :)
Can't claim it - it was Goofynina not me, who suggested that.
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Do the pills have to be chewed cayleighrose? I dont blame him for not wanting to chew them up ickkk lol
When I was younger I was on titrilac (horrid $%#$% things), and I used a pill cutter to cut them into quarters as if I even attempted to swallow a whole or even half a tablet, they would come straight back up. I also found it easier swalling them (and any pills) with milk, it seemed to push them down easier than water. These days I throw the whole pile down in one go lol But thankfully those icky pills arent part of the pile. This time round on dialysis I was put on caltrate and alutabs which thankfully have a coating, so they slide down easy. I think the chalky texture of some pills makes them difficult to swallow, especially prednisone!
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Does anyone know how many is too many binders. For instance: If i were to go to dinner and have 3 binders with my meal and then went to the movies right after that and had some, yummmm, chocolate, and had 2 more binders with the chocolate, is that too many? i have never been told exactly how many is too many.
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Hello GN~
My Neph. prescribed 2 Phoslo with meals and 1 with snacks and my labs have been great. Good luck to you! ;) Anja
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my doc said max. 24 pills a day
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WOW deej, I think I'm moving to Brazil! I wish we could get our meds free. ;)
My hubby takes 5 Renagel with each meal, but our insurance will only cover 100 pills a month at $101.27. >:(
They are free where I live as well! I have only had to pay at most $2 per medication.
Does anyone know how many is too many binders. For instance: If i were to go to dinner and have 3 binders with my meal and then went to the movies right after that and had some, yummmm, chocolate, and had 2 more binders with the chocolate, is that too many? i have never been told exactly how many is too many.
It all depends oh what binder you are on. I know there ARE limits to the Tums for sure! I can't speak for the others but ALWAYS check with either your dietician or pharmacist or BOTH!!
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Definitely get advice as to how many tablets for what meal or snack. I was on 2 caltrate with meals and 1 with snacks if they had cheese, milk etc. If you are having an apple and a glass of water you dont need a binder.
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SpeedFlex, I like your doc´s "formula" for your binders. Are you allowed coke and pizza???? Everytime I eat pizza, my blood exams go bananas! But do you take all 7 while you´re eating the pizza? Why do you take them with coke? What about taking your binders with a normal meal?
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SpeedFlex, I like your doc´s "formula" for your binders. Are you allowed coke and pizza???? Everytime I eat pizza, my blood exams go bananas! But do you take all 7 while you´re eating the pizza? Why do you take them with coke? What about taking your binders with a normal meal?
the cheese and sauce on pizza both have a lot of phosphate and both coke and pepsi are high in phophate.
I have pizza once in awhile and even though I could eat a whole one (if it is the thin kind) I can't because of the phosphate content. I have 3 tums with a pizza but take one at the beginning and one in the middle and one at the end. But since I am only allowed 3 tums with each meal = 9 a day (even tho max is supposed to be 3/day it says on the bottle ..) I must plan my meals around what snacks I will have since I must take 1 binder with snacks too. I usually only need 1 or 2 binders for breakfast / lunch anyway so it works out for me... especially since I don't always eat breakfast when I should :P
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Angie do you have trouble with potassium if you have pizza?
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I always take them and that's where the trick is, I don't eat pizza everyday either maybe once every 3 weeks but when I take the binders I usually take them in between and not before or after so it can mix up with the food real good.
But I always take binders no matter what because everything has phosphate.
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SpeedFleX, as long as you know that the binders dont have any effect on the potassium in foods.
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SpeedFleX, as long as you know that the binders dont have any effect on the potassium in foods.
What..?? You mean some binders have an effect on the pottasium in foods?? ???
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yeah that is new to me too, my potassium is fine through
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Nooo I meant they DONT affect the potassium lol
Sorry I think I got the wrong idea, just ignore me ;)
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oh I get it now^^ Yeah I know Phosphate binders have nothing to do with Potassium
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oh I get it now^^ Yeah I know Phosphate binders have nothing to do with Potassium
That's what I thought! That is why I had to ask! lol Thanks for clarifying :)
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I was just doing some research and I found that in double-blind tests, Phoslo was shown to be more effective than Renagel.
http://phx.corporate-ir.net/phoenix.zhtml?c=100445&p=irol-newsArticle&ID=470316&highlight=
The study shows it to be better than calcium carbonate based binders like Tums, etc.
Just thought I would add this in.
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what is a double-blind test? I only take Tums because from years have having severe tonsilitis I have developed a fear of swallowing big pills :-[ .. that is why I take tums instead of Renegel whichis offered in my city.
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Hello all. Renagel has worked well for me. I take 4 800mg tabs with meals.
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Hello all. Renagel has worked well for me. I take 4 800mg tabs with meals.
Ya, and with the SIZE of those pills .. there is no way for me :( So I just take one 1000mg Tums and I am all set!
My bloodwork results: My Phosphate was PERFECT this month!!!! ;D ;D ;D
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I take Renagel myself. Was on Phoslo but it raised my calcium levels way too high.
The ones that I hated swallowing were the old aluminum binders back in the day. :P
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Nummy, yummy for the tummy fosrenol. Like eating chalk, but I manage to choke it down after every meal if I remember it. I am going to start puttping one in my lunch box everyday with lunch so I remember at work to take it.
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I don't think Tums is a binder. Don't people take it for the calcium content?
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Some people are able to use TUMS as their binder.
TUMS is calcium carbonate and PhosLo is calcium acetate.
Drug companies say TUMS binding action isn't as great as their drugs are. However it really depends on the patient. Some can get away with it and some cannot.
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For a short time, I used Tums only, and my labs showed some control of my phosphate/calcium situation. This last month however, I was not so 'compliant' and I got a warning on Friday from my nephro.
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I don't think Tums is a binder. Don't people take it for the calcium content?
Yes, Tums can be taken as a phosphate binder as long as you can take the Calcium. I don't take additional calcium and my dietitian and Nephrologist said to take them so I do. I have been told how much and everything. So yes, it is definately used as a phosphate binder. I take 1000mg ones. I take up to 3 with each meal depending on what I am eating and how much.
Here is a link about it (http://www.phosphoruscontrol.com/PH/CalciumBasedBinders.aspx) and which I quote from:
Tums® (calcium carbonate; Smith-Kline Beecham, Pittsburgh, PA) is primarily used as an antacid,3 but has been used as a source of calcium carbonate to bind phosphorus in hyperphosphatemia patients.
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Right now I'm using a combination of one Renagel for every two PhosLo -- instead of taking three PhosLo for meals with larger phosphorus loads.
In the past I've used TUMS EX. And in the old days, I took OSCAL and in the beginning there was Baselgel (Aluminum, very bad for us!).
I struggle with keeping my phosphorus down to about 5.5 mg/dL, while not raising my calcium above 10 mg/dL. Last week the calcium was 10.8 and phosphorus was 4.9, the week before the calcium was 10.3 and phosphorus was 5.6 :-[
TUMS and PhosLo overtime raised my calcium, so I tried switching to Renagel, but it gave me indigestion and lowered my Carbon Dioxide level (CO2). I'm now trying the combination.
I also just switched from IV Hectoral to IV Zemplar (to reduce PTH levels). PTH medications can affect the gut's absorption of calcium. We'll see what happens!
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I also just switched from IV Hectoral to IV Zemplar (to reduce PTH levels). PTH medications can affect the gut's absorption of calcium. We'll see what happens!
Should see a drop. My PTH was high so I was put on hectoral and my Calcium stayed the same, 8.5 but my phosphorus dropped from 3.5 down to 2.0.
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Hey BigSky,
Those are some impressive numbers you've got!
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hi,
I have to take 3 Renegels before each meal. I don`t worry about the cost of my drugs cos living in the UK and my illness being considered chronic and because I have a fistula, I get them for free from the National Health Service although this isn`t the case for every type of illness.
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Ian only has to take three pills.
Folic Acid
Alphacalcidol
Calcichew
Rephrase that, Ian is supposed to take the above three. Despite reminding, he never does. Ironically, when he does take them, his bloods go all over the place, when he doesn't take them his bloods are good and he eats pretty much of what he wants although we do tend to have good, balanced meals.
He does, however, take his EPO - under duress.
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I take calcium carbonate 750 mg twice daily with meals.
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Anyone finding that their CO2 levels are going below normal since taking Renagel?
Carbon Dioxide Normal = 20 - 30 MEQ/L
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I keep containers of each in my work truck , in my car, at home, and in my wifes purse ( probobly the most important place!)
That's a really good idea ... you'll have them practically everywhere you go.
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I keep containers of each in my work truck , in my car, at home, and in my wifes purse ( probobly the most important place!)
That's a really good idea ... you'll have them practically everywhere you go.
Ya I find if I don't keep separate containers everywhere that I might forget my binders :(
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I tried tums hated the taste (like that should matter)! I am now on the Phoslo gel caps and they seem to be working well.
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I tried tums hated the taste (like that should matter)! I am now on the Phoslo gel caps and they seem to be working well.
I've only been offered Renegel. I hate the taste of most Tums (am VERY picky since the chalky taste is bad enough but also effects the taste of the food I am about to eat :( ...) but I have found I like the minty ones for dinners and the berries one for desserts.
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When I did take tums I found the the smooth dissolve type to be the best tasting. They came in assorted fruit flavors and were ot as chalky. Give them a try Angie!
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When I did take tums I found the the smooth dissolve type to be the best tasting. They came in assorted fruit flavors and were ot as chalky. Give them a try Angie!
Good idea! I had just asked the Pharmacist and she said they will work just as well as the ones I already take :)
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Anyone finding that their CO2 levels are going below normal since taking Renagel?
Carbon Dioxide Normal = 20 - 30 MEQ/L
Kinda late answer---maybe answer ;D
Anyway low CO2 levels can be caused by too much protein.
Considering that most patients have to intake much more protein than "normal" people that may be part of the reason for low Co2 levels.
Mine runs 13.8. Normal runs 21-30 with normal for dialysis patients not being less than 12.
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I take 3 Phoslo with each meal; also pop one if I have a snack and happen to remember! Someone mentioned potassium earlier in this thread - I have to drink 80ml of Sodium Polystyrene Sulfonate (referred to as "K-axcelate") every night as a potassium binder. That is some nasty stuff. Some nights I gag as I try to get it down! :-X
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Anyone finding that their CO2 levels are going below normal since taking Renagel?
Carbon Dioxide Normal = 20 - 30 MEQ/L
Kinda late answer---maybe answer ;D
Anyway low CO2 levels can be caused by too much protein.
Considering that most patients have to intake much more protein than "normal" people that may be part of the reason for low Co2 levels.
Mine runs 13.8. Normal runs 21-30 with normal for dialysis patients not being less than 12.
When I used Renagel exclusively as my phosphate binder, my CO2 dropped from an average of 25 down to 17. I now use 2 PhosLo and 1 Renagel and my CO2 is back to 22. I have been consuming the same amount (92 grams) and type of protein during the time that this occurred.
Of course, everyone's different, but ....
To quote K/DOQI Guidelines:
" ... the serum bicarbonate (as total CO2) should be monitored regularly at monthly intervals and correction of metabolic acidemia by maintaining serum bicarbonate at or above 22 mmol/L should be a goal of the management of individuals undergoing maintenance dialysis."
http://www.kidney.org/professionals/kdoqi/guidelines_updates/nut_a14.html
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When i was on Fosrenol, i never got heartburn, now that i am on Renagel, i get it every night, does anyone else have this problem? Please Please Please advise, it's driving me nuts... :-\
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When i was on Fosrenol, i never got heartburn, now that i am on Renagel, i get it every night, does anyone else have this problem? Please Please Please advise, it's driving me nuts... :-\
That's the other reason why I reduced the renagel and added PhosLo.
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Thank you Zach, it's good to know it's not just me ::)
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Is Phoslo available in Canada? I have seen it advertised in medical magizines but I was only offered Renegel.
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Someone just gave me enough Phoslo to last until the end of December! Just hope I remember to take it all the time! But I have no problem with Tums. In fact, I happen to like the chalky taste! A lot of kids in my day used to actually eat chalk. Maybe they had a calcium deficiency.
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Haven't been doing too well remembering to take my binders. My phosphorus was fairly okay for the first five or so months of this year. My last two months blood results show it a little high. My nephrologist had a serious chat with me about it last Wednesday, and I have started back taking my Tums with my meals. He said my calcium was within range. However, he also said that normal or low calcium indicated the need for attention to my phosphorus level.
I will try to be good. My daughter has been reminding me to take them. it will soon be a habit (I hope!)
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I take Renagel, but I was on Phoslo until very recently. However, I take tums for indigestion and since Phoslo ALSO has calcium it made everything go out of whack and I had really high calcium and really low phosphorus. I started Renagel about two months ago and now everything is back to normal. :bandance;