I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: aharris2 on February 16, 2008, 08:30:41 AM
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Rolando started using Fosrenal for phosphorus control about 5 months ago. It is EXTREMELY effective, much more so than Phoslo or Renagel. The problem is choking. Rolando has tried simply chewing them, we have dipped 1/4 size chunks into jelly, we have crushed them and mixed them into applesauce, mango puree, and jello. But no matter what we have tried, the little pieces get caught in his mouth and throat and trigger bout of extreme coughing occasionally to the point of vomiting (also good for phosphorus control, but not for teeth or nutrition).
Has anyone else had this problem and how have you handled it? We don't want to give up the Fosrenal because it really is so effective.
Alene
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I was on Fosrenol the entire 15 months I was on dialysis this time around, and I agree, it is extremely good at its job! I would occasionally get to the point of gagging because they taste so nasty. Around four months ago, I figured out that if I took them just before my first bite of food, rather than at the end of the meal, I didn't have such a problem, as the flavor of the food would take away the taste of the medicine.
Also, make sure he chews them COMPLETELY, so there are no little pieces left. Mine would be almost liquid by the time I swallowed them. This might help if it's pieces that are making him choke.
Good luck!
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Chew and chew and chew on those suckers.
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I actually started on Fosrenal and I wound up not taking it because it would make me gag so much. I wound up having my doctor change me to Renagel.
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Les was first put on Fosrenal, and he could
not tolorate it at all. We also tried chopping,
grinding, etc. those awful lil suckas-
Dr. now has him on Renagel, and his phos. is
very good, about 4.3 every month.
He takes them before he eats-800 mg. ,
three with a full meal, two with a snack,
(a snack to the big guy is a sandwich, ;D
perhaps if you ask Dr he could increase how much
Renagel he needs b/4 a meal.
It is just much easier to swallow and tolorate
Anne and Les
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perhaps if you ask Dr he could increase how much
Renagel he needs b/4 a meal.
It is just much easier to swallow and tolorate
Rolando used to take as many as 8 with a meal and his phosphorus was still not well controlled. Come to find out, from the DaVita dietician as soon as we switched to Fosrenal, that Renagel is effective over a limited range of pH - obviously not the pH of Rolando's stomach. I gotta wonder why she didn't tell us that a year or two ago and suggest switching to Fosrenal. Anyway, that's a different story. Apparently, if Renagel works well for a person, that person is in the pH band that Renagel needs to work. So, we are still experimenting.
Thanks to all who have given us their thoughts so far.
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I chew mine up with a good sized bite of food. Followed by a drink of whatever liquid I have. Even at that ,I sometimes find a small bit of grit in my mouth after my food. You might try breaking it into smaller pieces and chew it with food.Just make sure you get it. By the way,I use 1000mg which is some larger than the 500mg tab.
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I love Fosrenol. That stuff WORKS. I've been on PhosLo, Renagel, Tums.... none worked well. But Fosrenol, my Phosphorus for the last two months has been 3.2 - and I don't really watch my diet well.
I just chew and chew and chew on those suckers. They're nasty, but so is the renal diet.
~Steve
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I chew mine up with a good sized bite of food. Followed by a drink of whatever liquid I have. Even at that ,I sometimes find a small bit of grit in my mouth after my food. You might try breaking it into smaller pieces and chew it with food.Just make sure you get it. By the way,I use 1000mg which is some larger than the 500mg tab.
I was also on the 1000 mg tabs. Didn't realize they were bigger, since I never saw any others.
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I don't take them but I was wondering, can you crush them up and take with water.
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Those suckers won't dissolve in water. I tried an experiment and left them in water overnight, they were still there in the morning. When Len took Fosrenol, the Neph suggest he put some flavoring on them to get rid of some of the chalky taste (vanilla exact or some other flavor). Len just chewed them between bites. It was also suggested to crush them up and put them in applesauce, we never tried that. They did control Len's Phosphorus well. He ate better then, then is does now with a transplant. Go figure. :banghead;
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no dramas here, just chew em , mix with food then swallow :2thumbsup;
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no dramas here, just chew em , mix with food then swallow :2thumbsup;
...and Homer there with his gun saying 'you'd better NOT choke' (gulp) yes sir...
An effective combination.
We are still playing with this. The breaking it up into quarters and immediately following it with food may be the best.
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Oh, the 1000 mg Fosrenols....yuck. Grit all the rest of the day. Well, at least it got me to brush my teeth three times a day, hehehe. I really had to flush them down with some kind of liquid, but that's not kosher for everyone, given our liquid intake restrictions.
I just switched back to Renagel after spending a year vomiting almost every day. We thought it was the Sensipar, and that I would just have to suffer through it, but it appears that it was the Fosrenol making me puke all the time. Has anyone else had this kind of reaction from Fosrenols?
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They gave me samples of the giant chalky tablets of Fosrenal today at clinic. Phoslo was working, but non-formulary and my calcium was too high anyhow. Renegals aren't doing enough - I'm taking up to 6 at a time, and my phos is still in the 7's and steadily climbing. I'm frustrated because my PTH is sky high, and that's probably what's keeping the phos up. As long as the phos and calcium are up, I can't take the Hectorol that is supposed to bring down the PTH. I keep cutting phos out of my diet and the numbers go up instead of down. :banghead;
So I had my first Fosrenal today - not too bad. As a kid, my mom used to get me glucose tablets to carry for insulin reactions. They were basically orange flavored chalk. I was used to that, so the Fosrenal didn't seem so bad to me. I chewed it up and swallowed it down with a swig of water. I hope it works better for me than the Renagels.
I was EXTREMELY non-compliant today too! I did a food diary last week for my dietitian to look over. I sent the number of Renagels I was taking with each meal. I'm taking more than she thought I was, and it still wasn't working. Her suggestion for seeing if the PTH was really the problem (read that - she thinks I'm lying about how much I'm eating, even though I wrote it all down!) was to spend a week eating no phosphorous at all. None. Zippy. Zero. As in, no cheese, no meat, no bread, no chocolate! Nothing at all with phosphorous, even in tiny amounts. Fruit, veggies and water for a week straight. I looked her straight in the eye and simply and forcefully said, "No. I can't do that." Call me uncooperative and non-compliant if you want - I'm not starving myself for week to prove something I already know is true!
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Rolando used to take as many as 8 with a meal and his phosphorus was still not well controlled. Come to find out, from the DaVita dietitian as soon as we switched to Fosrenal, that Renagel is effective over a limited range of pH - obviously not the pH of Rolando's stomach. I gotta wonder why she didn't tell us that a year or two ago and suggest switching to Fosrenal. Anyway, that's a different story. Apparently, if Renagel works well for a person, that person is in the pH band that Renagel needs to work. So, we are still experimenting.
Jbeany, Perhaps your stomach pH is outside of the effective range of Renagel. Is your dietitian aware of this limitation of Renagel? It came as quite a surprise to us. I'm glad you're having an easy time with the Fosrenal. Like a couple of others have said, it is very effective in controlling Phosphorus. Rolando uses between 1000mg and 2000mg per meal depending on what he's eating. His phosphorus is just over 3.
My understanding of the calcium/phosphorus metabolism (admittedly weak) is this: It is the high phosphorus level in a kidney patient that drives it. Without the extra calcium from Phoslo (not necessarily a good thing) your pth level will go high to rip calcium out of your bones to balance the phosphorus (definitely a bad thing leading to osteoporosis). It is critical to control phosphorus to prevent osteoporosis.
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Yes, she mentioned the Ph thing today. That's why they decided to try the Fosrenal. Yet another thing I wish they had bothered to mention sooner.
We also found out something interesting about the lab I've been using. I send my normal weekly labs to the hospital in the closest town. The dialysis unit is connected with another hospital in a town farther away. We did a lab comparison today. The lab I do my regular blood work at gives higher results for the phos - by about 1.5 this time. Makes me wonder which lab I should believe, and how often I've had to skip the PTH treatment because my blood work was just out of range because of those skewed results.
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as a side note i read the subject really fast and all i read was how do you keep from choking on it :rofl;
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as a side note i read the subject really fast and all i read was how do you keep from choking on it :rofl;
Yes! Got any new and novel techniques from down under to make it easier to take?
>:D :ausflag;
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Ours are bigger down here which makes it harder so yours should already be easier to take ! ;D ;) ;D
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:o ;D
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Hack, choke, hack ...just imagine you are a cat hacking up a hair ball.
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i hope know one else has anything to bring up ;)
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I've been on 1000mg Fosrenol for 6 months and agree it works great as I don't need to take renegels or phosex anymore and I was taking 7 of them with each meal.
I don't have any issue with Fosrenol, just chew chew chew.
For those of you who are puking, you do know that if you take Forenol on an empty stomach then one effect is serious vomiting. Make sure you take them when you have eaten.
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We seem to have a winner!!! We take the behemoth, crush it into a fine powder and mash it into...
( :oops; , dare I say???)
An oh so small, teeny tiny little 1/2" segment of... of... of...
( :bandance; yes, yes, that's it)
A small bit of BANANA (oohhh, ahhhh!)
So tasty (even mixed with Fosrenal) and just the right consistency to fully trap all of the dust particles. No choking and no "wasted" meals. I will report back after monthly labs about potassium and phosphorus (it would be just our luck if this method was trapping the dust too well, not permitting it to go forth and bind the phosphorus.
Jbeany, how are you doing on it?
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:o I won't tell if you don't! I'll be curious to know how your labs look.
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Jbeany, how are you doing on it?
This week's labs - a lovely 4.8 - after a week of on the run, take out and Mexican with too much cheese and refried beans. Hooray! I now have normal potassium and phosphorous both. It was even lower last week when I wasn't eating junk all week. Now I'm getting regular doses of Hectorol, thanks to the lower phos, so hopefully my PTH will finally start dropping as well.
I like it a lot better than the renagels - I actually find it easier to take when I'm on the run - no need to order a drink at all - just chew it up and eat my meal.
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I was picked as one the "trials" for Fosrenol at my clinic. They even gave me a pen and blanket and other freebies. I didn't mind the way i had to take them. However throwing up every other day didn't help. I found out that the pen and blanket tasted allot better. I only took Fosrenol for a year. I am now on Phoslo and Renagel.
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I have a supply of fosrenol, renagel and phoslo. I find that switching off if one becomes more than I can stand to choke down works for me. I actually think that the crushing and putting into banana or maybe even a little applesauce might be something more palatable. I never thought of doing it that way. Thanks for the sugestion Aharris!!! :2thumbsup; Do let us know what your labs say Ro I am interested to see if the banana made a difference or not.
Earlinda
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My nutritionist suggested placing a few Fosrenol into an Altoids container with the Altoids. They tend to pick up the flavor. I haven't tried it yet, but I thought it might be a good ideal.
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I went to a Kidney Symposium yesterday and spoke to the rep from Fosrenol. As mentioned, he said that you can add candy or mints to the Fosrenol container and the Fosrenol will absorb or take on the flavor of the candy so it's not as bad to chew. For example, he said add Mike and Ike (a fruity jelly bean like candy) or Altoids. The other suggestion was to make Jello, pour into a ice cube tray, refrigerate and as it starts to gel, add one ground up Fosrenol to each cube. Refrigerate until firm, pop them out of the tray and keep in a bag (refrigerated) until you need one. Not too handy on the go, but sounds like it might make it easier to swallow. Thats the best he could come up with!
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My nutritionist suggested placing a few Fosrenol into an Altoids container with the Altoids. They tend to pick up the flavor. I haven't tried it yet, but I thought it might be a good ideal.
I went to a Kidney Symposium yesterday and spoke to the rep from Fosrenol. As mentioned, he said that you can add candy or mints to the Fosrenol container and the Fosrenol will absorb or take on the flavor of the candy so it's not as bad to chew. For example, he said add Mike and Ike (a fruity jelly bean like candy) or Altoids. The other suggestion was to make Jello, pour into a ice cube tray, refrigerate and as it starts to gel, add one ground up Fosrenol to each cube. Refrigerate until firm, pop them out of the tray and keep in a bag (refrigerated) until you need one. Not too handy on the go, but sounds like it might make it easier to swallow. Thats the best he could come up with!
Wish I had heard some of these when I still needed to take it. They sound like great ideas!
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My nutritionist suggested placing a few Fosrenol into an Altoids container with the Altoids. They tend to pick up the flavor. I haven't tried it yet, but I thought it might be a good ideal.
I went to a Kidney Symposium yesterday and spoke to the rep from Fosrenol. As mentioned, he said that you can add candy or mints to the Fosrenol container and the Fosrenol will absorb or take on the flavor of the candy so it's not as bad to chew. For example, he said add Mike and Ike (a fruity jelly bean like candy) or Altoids. The other suggestion was to make Jello, pour into a ice cube tray, refrigerate and as it starts to gel, add one ground up Fosrenol to each cube. Refrigerate until firm, pop them out of the tray and keep in a bag (refrigerated) until you need one. Not too handy on the go, but sounds like it might make it easier to swallow. Thats the best he could come up with!
For us, the problem is texture, not taste. The fosrenal-spiked jello cubes is intriguing and we may try it sometime.
As promised, we are sharing Rolando's labs (they are midmonth, so it is only phosphorus and calcium):
Phosphorus = 2.3 (down from 3.2, we may actually have to back off a little!)
Calcium = 8.7
We will share the potassium # at the end of the month. It is always on the high side because Rolando is a potato fiend and is quite fond of forbidden fruits. I don't expect that the banana will have a noticeable effect. We also tried mixing the crushed fosrenal into a boiled carrot. It was not as tasty as the banana, but it too was effective in capturing the offending itty bits of the crushed tablet.
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I guess my stomach pH was wrong for the Renagel, because I was taking 3 or 4 of them with each meal, they weren't controlling the phosphorus that well, and they made me nauseated. Fosrenol really worked well for me. I would chew them until they were almost liquid, as others here have said. Usually I'd wait until near the end of the meal, then take a couple of final bites to get the taste out of my mouth. That seemed to work for me.
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The results are in:
Phosphorus 3.3
Potassium 4.9 (Keep in mind that Rolando likes and eats potatoes - mashed, baked, Arby's potato cakes...)
Calcium 8.8
iPTH 385
So, Fosrenal mashed into banana is effective and not too hard on potassium levels. Super for us!
:bandance;
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Shhhh...don't tell anyone, but if you take a banana and mash it up and add marshmallows and chocolate chips, you get a really super dessert idea! Shhhhhh! Don't tell them where you got the idea.