2 Quick questions about high phos.

[KICKSTART]

Up to now ive had loads of problems with binders ( sick and stomach ache) and as a result of not taking any my phos is very high and the itching is driving me insane ! Its even keeping me awake at night. So ive decided its the devil or deep blue sea and started to take a half strength binder to try and get used to it and then if i can tolerate it gradually work up. My 2 questions are ; is there anything to ease the itching in the mean time and ;how long does it take before the itching stops?

[fluffy]

benadryl and calritin helps a bit, my doctor gave me something called hydroxizine specifically for itching and that helps too.  i still itch somtimes even with the binders. good luck with the binders tho

[Zach]

Also, try eating foods with the lowest phosphorus levels, such as:

Egg Whites        1/2 cup = 18 mg phosphorus (198 mg potassium, 13 grams protein)
Cooked Shrimp   3 oz=116 mg phosphorus (155 mg potassium, 17 grams protein)
Cauliflower        1/2 cup = 23 mg phosphorus (127 mg potassium)
Corn Flakes       1 cup = 10 mg phosphorus (22 mg potassium)
Applesauce       1/2 cup = 6 mg phosphorus (91 mg potassium)
Blueberries        1 cup = 17 mg phosphorus (84 mg potassium)
Graham Crackers  1 large rectangular piece = 15 mg phosphorus (19 mg potassium)

More information is available at:
http://www.nal.usda.gov/fnic/foodcomp/search/

 

[KICKSTART]

Thanks Zach , i already follow a low phos diet.
Anyway spoken to one of the renal team and they have told me to take Piriton and use E45 cream to help with the itching , so i will give it a go.

[RichardMEL]

KS have you been able to explore taking a different binder? I am not sure what you are on now but it could just be a problem with the specific binder you're on. I take Renagel as a binder and have NO issues ever with it (it's bloody brilliant ) - I am not saying it would work for you, but it may also just be a case of changing the specific binder you're on, since there are a number of options that may be suitable for you.

[kellyt]

What about using Tums as a binder instead of the presciption medications?  I used Tums.  Only thing is you have to watch your Calcium levels.  Good Luck!

[KICKSTART]

Richard .. you name it , i have taken it !!!! I have tried EVERY single binder out there ! I dont know why but i just cant stomach them at all , which is causing no amount of problems!
Kellyt.. I did ask about Tums but was told i couldnt take them (also i would need to take sooooooooo many it wasnt practical !)

[Zach]

Richard .. you name it , i have taken it !!!! I have tried EVERY single binder out there ! I dont know why but i just cant stomach them at all , which is causing no amount of problems!
Kellyt.. I did ask about Tums but was told i couldnt take them (also i would need to take sooooooooo many it wasnt practical !)

Unless your calcium is too high, taking two Tums-EX or Tums-Ultra should do the trick, especially if you are keeping your phosphorus down to about 150-200 mg per meal.

Also, have you tried the new version of Rengel?  It's called Renvela and has less side effects.  Then there is also Fosrenol -- a bit chalky but very effective.

Then of course, there is Alucaps or Basaljel, very effective, but they carry risk of too much aluminum.

[RightSide]

Up to now ive had loads of problems with binders ( sick and stomach ache) and as a result of not taking any my phos is very high and the itching is driving me insane ! Its even keeping me awake at night. So ive decided its the devil or deep blue sea and started to take a half strength binder to try and get used to it and then if i can tolerate it gradually work up. My 2 questions are ; is there anything to ease the itching in the mean time and ;how long does it take before the itching stops?

There is scientific evidence that 8 treatments of ultraviolet-B (UV-B) light on the skin causes changes in the skin that protect against itching for up to 6 months.  (After which you can go for another 8 treatments if you wish.)

BUT:  UV-B light is known to weaken the material of which hemodialysis catheters are made.  Hence this type of treatment should be used with other types of access like fistulas or grafts, NOT while you're getting dialysis out of a catheter.

[boxman55]

you could also ask your Doctor for a prescription for Hydroxyz HCL it is generic taken 3x a day works pretty good to control the itching...Boxman

[Wallyz]

Ask fro a couple weeks of extended (8 hour ) sessions. The long slow dialysis helps take the phosphorus off.

[KICKSTART]

Some interesting facts there. In answer to some of them i do PD so some of the suggestions are not possible , but thanks anyway.
Zach .. i will follow up the new Renvela as i have never heard of it , it is possible we might not have it over here , but i will ask. Pretty much everything else you have suggested i have either tried or cannot have for one reason or another.
The Piriton and E45 have more or less stopped my itching or at least made it bearable though.

[jcanavera]

My wife starts the UV-B treatments today.  She's on PD and with Renvela her phosphorus levels are normal so we are hoping that this will give her some relief.

Jack

[cassandra]

Hi Jack, but what about what RightSide wrote about the weakening of a catheter?

Love Cas

[Simon Dog]

It's called Renvela and has less side effects.  Then there is also Fosrenol -- a bit chalky but very effective.

Renvela is working great for me.   My doc tried prescribing Fosrenol but it was not on my insurance formulary and was going to cost  me a fortune.    He tried Auryxia for a while, but switched to Renvela when there was a supply problem (which has been resolved).  Auryxia works nicely and is iron based (your doc will look at your Fe levels before prescribing), but has the disconcerting effect of turning your stools as black as the ace of spades.

[Riki]

As a child, I had trouble stomaching the Tums.  They were just too chalky and I couldn't get them down.  My dietician suggested calcium carbonate pills, and they seemed to do the trick.  I take Tums Smoothies now, and when I'm out and about, I have the chewable Tums, all approved by my dietician, of course.. *G*

[Charlie B53]

Switching from PD to Hemo I have had to start taking my Binders with everything I eat.

Perhaps I have a very tolerant stomach, as I am taking three or four Renvela every time.  Two wasn't enough and my labs made that very clear.

Now if I could just get my pth back down.  Maybe next month.

[Riki]

I don't know if PTH will go down unless you have the parathyroids removed..  I had 3 and 3/4 of mine removed in 2005.. I understand that there are medications now that they didn't have then.. things tend to change over decades.. *L*

[LorinnPKD]

Yep: Medications for PTH!

They can put Vitamin D (Hectorol) in your HD line, and that's what most people do to bring PTH down.  I had trouble with the Hectorol -- for some reason it bumps my calcium too high, but that's kinda rare -- so I'm on Sensipar now. Most people do just fine on Hectorol.

[Riki]

I can honestly say that is something I've never heard of.  Vitamin D is something that we are all told to take, but I've never heard of it being put in the lines

[AaishaDar]

I was only 16ish and I had to stop eating my favourite foods. It was torture. It really wasnt fair. I had a huge problem with my phos and I was already small but I lost so much weight being on this diet. My doctors didnt believe i wasnt taking my meds and they were awful meds. I would lose my appetite when i had to eat a med while having my meal and sensipar is the worst medicine ever. I felt sick to my stomach and wanted to throw up. This was going on for 2 years and my bones started degrading. I developped painful calcium deposits in my hips to make up for the bone deterioration and walking became difficult for me. Finally a doctor reccomended I take a special test to check my parathyroids. Turns out they were overactive and making my phos and pth very high. I got them removed and both of my levels went back to normal. I suggest paying more attention to the diet like cooking home meals with low phos. If you do that than you won't have to eat many pills. Diet plays a better roll than pills. If you have trouble thinking what to make for your meals there's a meal planner on davita. Just put in your info like how mich phos youre allowed and protein etc and it will give you things to eat for the whole day. It helped alot because sometimes you run out of ideas. I wish you luck:)






sp mod Cas

[Simon Dog]

It's called Renvela and has less side effects.  Then there is also Fosrenol -- a bit chalky but very effective.

My MD tried RXing Fosrenol but it was a non-formlary drug at $1K per fill, so he moved on to Renvela.   Works great for me, no side effects.    From the Genzyme cartel.

[kristina]

I tend to agree with what Zach suggested and perhaps there are many ways to eat healthy without needing any binders.
I have been on dialysis for quite a while now and my doctor regularly checks up on my blood
and has never suggested any binders and hopefully it stays that way...
Good luck wishes from Kristina.

P.S. I am a vegetarian and cook everything from scratch and bake my own bread etc.

[kickingandscreaming]

. I am a vegetarian

Kristina- how do you maintain your albumin leverls on a vegetarian diet?  I would love to eat vegetarian, but even eating a TON of meat and animal protein I can't meet the albumin minimum.

[kristina]

Hello K&S,
To be quite honest, I don't really know. We just cook everything from scratch every day and there are no spices, no seasoning in our food and all the veggies are cooked in plenty of water (to bleach out as much potassium as possible) and our breadmaking-machine bakes our salt-free-bread and it is all very simple. My doctor looks at my blood-samples every month and she always tells me that I should continue with what I do because in "my" ESRF I could not do any better. Some of our recipes are mentioned in the diet section.
Best wishes and good luck from Kristina.