Non-calcium binders

[sico]

Is anyone on here using non-calcium binders?
Seen my Neph yesterday, she said my calcium and phosphate are elevated. Then wrote me a script for Renogel binders for me to try.
I had a good chat with my Transplant Nurse and met a kidney recipient too.

[Darthvadar]

Hi Sico....

Nice to meet you....

Mum was on Calcichew, which worked well as a phosphate binder, and while it didn't cause calcium problems for her, she found the fact that they were so sweet and sickly, and had to be chewed a major turn off... I asked around friends, and one of them told me of Renagel... The neph. was scepitical, for some reason he thought it wouldn't work for her, and he was worried about her Calcium levels... She's on them for about ten months now, and her Calcium levels are as they should be, and her phosphate levels are always at the lower end of normal...

Mum praises Renagel, anyway... No harm in trying... You've nothing to lose!....

Best of luck with it...

Darth....

P.S.... Whever you get an infection and are on antibiotics, try to take your antibiotics a few hours apart from Renagel... The Neph. says that they can interfere with the antibiotics effectivness...

[sico]

Thanks Darth.
I'll get these binders soon. My calcium ones (cal-sups) are great, spearmint flavoured. So no dramas with taking them, suck or chew.
 I'm interested in what Renogel is like, my Neph said I can dissolve them in a drink.

[Darthvadar]

Hi again, Sico...

Mum finds Renagel very good... No complaints!...

God bless...

Darth....

[billybags]

My husband takes Renagel as a binder. He mainly has toast for breakfast, so you dont need one with that. He takes one with a sandwich, one with a cake or biscuit and two with lunch and dinner.He has taken them for a over a year. Some times the Neph says cut them down to say 6 a day then another month and its increase them. My husband has had no ill effects with these and apparently they are working fine. He takes them whole with water.

[RichardMEL]

Renagel is a godsend! I was on alu-tabs before as the binder and they were OK but caused other stuff. Renagel is really good, no side effects, and you just swollow it no chewing or anything. I can't speak highly enough for this stuff

Yes, take whole with a mouthful of water no problem - obviously with food. I have 1 with snacks and 2 with larger meals containing lots of phos.

[nick]

my doctor told me that renagel is work good the only problem here we dont have renagel in any drugstore here in there Philippines. so that why we dont have a good noncalcium binder here

[RichardMEL]

my doctor told me that renagel is work good the only problem here we dont have renagel in any drugstore here in there Philippines. so that why we dont have a good noncalcium binder here

Yeah nick I can understand that - we did not get renagel or sensipar approved for use here till only a year ot two ago. It was difficult to get it prior to that. Now the govt pays a subsidy for it (hooray!). I hope you can get it over there soon.

Alu-tab which I used before is a non-calcium binder. Can you get those there?

[sico]

Hey Richard what is Renagel worth? As the Cal-sups were relatively cheap at $6 AUS per bottle of 60 tablets, which lasted me 10 days.
I haven't got Renagel yet, I'm up at my parents place and don't yet know if their local chemist can get them.
They couldn't get my EPO when I was here months back. Might just wait 'till I'm back in Melbourne later next week.

[nick]

richardmel
ill try if i can see it here alutab thank you

[Wattle]

 we did not get renagel or sensipar approved for use here till only a year ot two ago. It was difficult to get it prior to that. Now the govt pays a subsidy for it (hooray!). I hope you can get it over there soon.

Renagel is an authorized prescription here Rich and Sico. Your calcium blood level has to reach a certain level before you can get a script. It will cost you the same as a normal script, around $32. They are very easily swallowed. Just remember to take them!!
I have a new bottle unused sitting on the top of my cabinet! :p

[RichardMEL]

yes, ty Wattle. My Calcium was a little high when i started and it went down into the normal range. WOO HOO!!! And yes Sico it's a PBS drug, so $32 (or $5 if you're a health care consession card holder). It was also great to go from having to take 4 alu-tabs with a meal to 1 renagel I've been on it for over a year now and it's been very good for me.

[Restorer]

I'm on Renvela, a slight variant of Renagel. Really expensive for me, but that's also because I'm supposed to be on 3 per meal, so 270 pills per month. It costs me around $120 after insurance covers 80%.

[sico]

I'm on Renvela, a slight variant of Renagel. Really expensive for me, but that's also because I'm supposed to be on 3 per meal, so 270 pills per month. It costs me around $120 after insurance covers 80%.

I'm to take 2 with meals, which is the same as the cal-sups. So 180 per month, which is what my script is for.
The cals were worth $18 so if the renagel costs me $32 that aint bad.

The PBS (pharmaceutical benefits scheme) confuses me to no end. My local pharmacy is not real helpful. I thought if you had a health care/pension card (which i do) scripts would all be $5. But i still pay the same as before i got the card. I'm lucky I'm not on much at the moment, the Neph I seen on Monday was surprised. Probably a good thing.   

[RichardMEL]

Sico that IS weird. You should be getting them at the discount rate?!!?!

btw you wrote in another post about not being able to get epo (or was it aranesp) via your local pharmacy. I think that's because some drugs (sensipar is another) require a special hospital perscription - I can only get that stuff from the hosp. pharmacy (I think it has something to do with restricted drug availability and PBS authorisations). Luckily the unit orders my aranesp now so I don't see the scripts or pay anything and they stick it in the line so I'm good to go.. and I just pick up my sensipar once a month which isn't too bad.

Good luck with the Renagel! I hope it works as well for you as it does for me

[sico]

Yeah Richard, I think I have to ditch this pharmacy. Try to find one with helpful staff.
It was good getting free EPO at the unit when I was on HD.
Renagel does sound like a good thing then.

[murf]

My specialist recommended that I take Renagel but later found that my phosphate level didn't come down to an acceptable level so I take 2 renagel and 1 caltrate with meals. I am on a pension in Oz so a bottle only costs $5. The real price is over $300. My local chemist needs notice of about a week to get them in. Easier to swallow than having to chew calcium.

[nick]

hope is somebody knows who will go here please sent me a bottle of renagel then i will pay it to..

[RichardMEL]

My specialist recommended that I take Renagel but later found that my phosphate level didn't come down to an acceptable level so I take 2 renagel and 1 caltrate with meals. I am on a pension in Oz so a bottle only costs $5. The real price is over $300. My local chemist needs notice of about a week to get them in. Easier to swallow than having to chew calcium.

You got that right!!! I *hated* having to chew the Caltrate with my food it was horrible.... the renagel just goes down no worries

It's interesting you say that about your phosphate because mine's crept up a bit - when it was around 1.0 for a long time, it slipped up to 1.5 so yeah maybe I will have to do something similar. I've already upped to 2 renagels with meals. We will see what the bloods this week say

[Restorer]

Is the Caltrate any worse than the Fosrenol I'm also taking? I have to chew that, and I'm supposed to chew it very well before swallowing. It's a big ol' tablet that tastes like, well, hard to describe. It's unflavored, so all the wonderful flavor of the lanthanum carbonate, dextrates, and magnesium sulfate comes through.  The worst part is that, if I still have food particles in my mouth (say I'm chewing one in the middle of a meal), the Fosrenol starts taking effect right there in my mouth, binding the phosphorus in the food particles and changing their texture to something not at all pleasant.

And then of course I have to wash the taste out of my mouth.

[RichardMEL]

hope is somebody knows who will go here please sent me a bottle of renagel then i will pay it to..

Nick, good idea but at least here in Australia that is very illegal. In theory we're not even supposed to take PBS supplied drugs out of the country, but obviously they waive that if it's for our personal requirements on a holiday or something. Anyway you shouldn't put yourself on another medication (wherever you get it from) without consulting with your treatment team/neph. Everyone's situation is different and what works for some of us may be detremental to others

[sico]

Finally picked up my renagel. Pharmacy looking after me now, $5.30 scripts. Awaiting a refund from Medicare as I was paying too much.   
180 renagel tablets says full cost $357.73 AU. Aranesp (4 syringes 20mcg) full cost $373.49 AU.
The renagel slides down my throat easy, no dramas.

[sico]

Seen my Neph on Monday.

Phosphate elevated, so am on Fosrenol now. 2 x 750mg tablets with each meal. They are rather big but easy to chew on.
Hopefully this brings my phosphate back to a good level.

[RichardMEL]

sico have you been taken off the Renagel?

btw aranesp 20mcg is a very low dose. the 50's and higher cost into the thousands full cost. yikes!

[jbeany]

Fosrenal absorbs flavors easily.  Stick your favorite hard candy in the bottle and leave it there.  You'll taste that instead of so much chalk.  I used to tuck one into a bag of dried cherries and chocolate chips to take to D, and it even absorbed some of those flavors.