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Author Topic: Doctors appt today & D !  (Read 4279 times)
KICKSTART
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« on: November 16, 2010, 03:25:22 PM »
Hmm got the news ive been waiting for but not wanting ! Im up for a parthoidectomy (sp?) Im sure RM will correct me if thats wrong ..hehe !  I have been expecting it for quite a while now , its mostly resulting from not being able to take binders , they have such an adverse effect on me. Now the interesting part .....im doing it by medication !!!! Yup tablets !  I did mention quite a while ago that i had found out about this , so it looks like ive got the ok. The reason they use mostly surgery .. cost effective. The tablets are soooooooo expensive ..guess im lucky?  Just wondering what side effects are going to hit me ?
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Stoday
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« Reply #1 on: November 16, 2010, 05:15:39 PM »
What tablets KS?

Cinacalcet by any chance?
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RichardMEL
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« Reply #2 on: November 16, 2010, 06:39:19 PM »
good deal. The tablets (sensipar, or cincacalet by its more formal name - as Stoday states) is a real boon to keep that knife from my throat. I've get my PTH pretty well down with it and had no side effects. So glad they are going to give it to you. Down here it's subsidised. I pay $33 and the "real cost" on the package is something like $350.

good luck with it. Some have side effects but hopefully you won't!

 :bow; :bow; :bow; :bow; :bow;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Riki
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« Reply #3 on: November 16, 2010, 06:43:41 PM »
There was no hesitation in the removal of my parathyroids. I think it was 3 and a quarter that they removed.  If I had've known there was some kind of drug, I probably would have wanted to try that.  I"m not sure if any existed at the time.  That was about 4 years ago.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
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MooseMom
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« Reply #4 on: November 16, 2010, 07:02:16 PM »
I'm not sure whether or not to congratulate you!  I'm just glad that you are being treated for the problem.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #5 on: November 17, 2010, 12:22:58 AM »
Im not sure whether to congratulate you either, but I suppose that taking the drugs instead of surgery would be a good thing, providing the side effects and the cost of them is not too out of line. Good luck to you, whatever happens.
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KICKSTART
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« Reply #6 on: November 17, 2010, 05:25:06 AM »
No guys its not Cinacalcet , its another one , will post what it is when i get them. I cant take cinacalcet because my phos is way to high. Im just hoping i dont get any side effects and im lucky that cost doesnt come into it for me.
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Zach
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« Reply #7 on: November 17, 2010, 08:37:24 AM »
Quote from: KICKSTART on November 17, 2010, 05:25:06 AM

No guys its not Cinacalcet , its another one , will post what it is when i get them. I cant take cinacalcet because my phos is way to high. Im just hoping i dont get any side effects and im lucky that cost doesnt come into it for me.


Cinacalcet (Sensipar) can be taken with a high phosphorus.  While it's primary use is to lower PTH and shrink the Parathyroid glands, it also lowers serum calcium, and in some cases, serum phosphorus as well.

Have you tried 500 mg niacinamide (Vitamin B3) twice a day to help lower your phosphorus?

8)
« Last Edit: November 17, 2010, 08:50:38 AM by Zach » Logged
Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
KICKSTART
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« Reply #8 on: November 17, 2010, 11:00:12 AM »
Hi Zach ..interesting question as no one has ever mentioned Vit B3 over here , in fact im not even sure if its used to control high phos levels here ? My neph stated yesterday i cannot take Cinacalcet , so maybe there is high phos and high phos ! I cannot tell you the name of the tablet im going to get but i do know it was 2 words. Soon as i get it i will post it as im interested in knowing more about it as it seems to be the 'norm' to use Cinacalcet.
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Zach
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« Reply #9 on: November 17, 2010, 11:18:00 AM »
Here's some information about niacinamide:

A Randomized, Double-Blind, Placebo-Controlled Trial of Niacinamide for Reduction of Phosphorus in Hemodialysis Patients
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440276/
 
8)
Logged
Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Riki
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« Reply #10 on: November 17, 2010, 11:06:53 PM »
Quote from: Zach on November 17, 2010, 11:18:00 AM
Here's some information about niacinamide:

A Randomized, Double-Blind, Placebo-Controlled Trial of Niacinamide for Reduction of Phosphorus in Hemodialysis Patients
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440276/
 
8)

I wonder what my neph would say to that.. he upped my Renegel today.. which doesn't make much sense to me, since my phos went down since last month... oh well...
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Dialysis - Feb 1991-Oct 1992
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dialysis - April 2001-May 2001
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KICKSTART
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« Reply #11 on: November 18, 2010, 02:34:44 PM »
Well i got my tablets today .....the wrong ones , bloody good job im alert ! (pardon my french!) Needless to say they went straight back.
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
MooseMom
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« Reply #12 on: November 18, 2010, 02:36:25 PM »
Quote from: KICKSTART on November 18, 2010, 02:34:44 PM
Well i got my tablets today .....the wrong ones , bloody good job im alert ! (pardon my french!) Needless to say they went straight back.

This is very Ricky G-ish... :rofl;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
KICKSTART
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« Reply #13 on: November 18, 2010, 02:39:08 PM »
Shame i havent got his money !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
MooseMom
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« Reply #14 on: November 18, 2010, 02:42:56 PM »
Quote from: KICKSTART on November 18, 2010, 02:39:08 PM
Shame i havent got his money !

Hopefully, though, you don't have his pointy little teeth, either.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
KICKSTART
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« Reply #15 on: November 18, 2010, 03:01:26 PM »
No i have fangs ... :rofl;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
MooseMom
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« Reply #16 on: November 18, 2010, 03:13:46 PM »
Quote from: KICKSTART on November 18, 2010, 03:01:26 PM
No i have fangs ... :rofl;

Much more effective!!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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