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Author Topic: No longer a need for parathyroidectomy?  (Read 7033 times)
Stoday
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« on: March 23, 2010, 07:38:10 PM »
My PTH has risen to over 200 pg/ml. Neph has prescribed Cinacalcet, which, he says, should eliminate the need for parathyroidectomy surgery. I've not heard of this drug before. Anyone else taking it?
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Diagnosed stage 3 CKD May 2003
AV fistula placed June 2009
Started hemo July 2010
Heart Attacks June 2005; October 2010; July 2011
cloud393
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« Reply #1 on: March 24, 2010, 10:57:25 AM »
I haven't heard of that one.  Sorry.  I get Zemplar. 
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jbeany
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« Reply #2 on: March 24, 2010, 11:04:42 AM »
In theory, there are a group of drugs that can lower the PTH and prevent surgery.  It's all mostly a synthetic Vit. D, I think.  In reality, the drugs won't work for everyone, or won't work well enough, and sometimes the only cure is surgery. 

I haven't heard of that one, either.  I was on Hectorol, after the Sensipar started making me vomit.
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sullidog
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« Reply #3 on: March 24, 2010, 05:28:12 PM »
Never heard of it, I'm only on zemplar since that seems to be the only PTH med my body can handle.
Troy
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
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-Lady Noir-
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« Reply #4 on: March 25, 2010, 01:53:38 AM »
Hmm, they tried to lower Mikes PTH for months,[phosphate binders] to no avail. Possibly because it had been so high for so long before they did anything about it.

Fingers crossed this one works for you Stoday  ;D
« Last Edit: April 29, 2010, 04:50:47 PM by -Lady Noir- » Logged
Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
Deanne
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« Reply #5 on: April 27, 2010, 01:14:09 PM »
According to a web search Cinacalcet = Sensipar. Same medication, different name.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
RichardMEL
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« Reply #6 on: April 28, 2010, 12:18:42 AM »
yep, it's Sensipar. This drug has done wonders for me. My PTH was at 70 or so and they were talking about cutting my throat (parathyroidectomy)... bang on sensipar 4x/week 30mg and I'm down to 28-30 and doing fine. Can't speak more highly about this drug for me. I've had NO side effects, my calcium has lowered as well(which is what it does) and my Phos is also perfect.

I hope it helps lower yours!
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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!
galvo
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« Reply #7 on: April 28, 2010, 05:12:03 PM »
I am confused, again. I can't find PTH on my path reports. What is it?
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Galvo
RichardMEL
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« Reply #8 on: April 28, 2010, 06:31:51 PM »
Quote from: galvo on April 28, 2010, 05:12:03 PM
I am confused, again. I can't find PTH on my path reports. What is it?

PTH measures your parathyroid hormone production. It's not a regular test that is run but is something your neph should definitely be keeping track of. Usually my unit does it every 3 months as a matter of course, but I usually get mine done more often. If you're concerned why not ask your neph or unit what your latest PTH was.

High PTH basically means that more Phos and Calcium are being sucked out of your bones, which down the track can lead to brittle bones, easy fratures, breaks etc.. and this is bad. So, to lower the PTH the usual course is either the operation to remove the parathyroid glands that up the PTH, or meds like Sensipar, which also lower it. Obviously taking a pill is a lot easier than having your throat cut :)
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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!
galvo
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« Reply #9 on: April 28, 2010, 08:47:47 PM »
Oh! Will check this out. Thanks.
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Galvo
-Lady Noir-
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« Reply #10 on: April 29, 2010, 04:49:48 PM »
Quote from: RichardMEL on April 28, 2010, 06:31:51 PM
Quote from: galvo on April 28, 2010, 05:12:03 PM
I am confused, again. I can't find PTH on my path reports. What is it?

PTH measures your parathyroid hormone production. It's not a regular test that is run but is something your neph should definitely be keeping track of. Usually my unit does it every 3 months as a matter of course, but I usually get mine done more often. If you're concerned why not ask your neph or unit what your latest PTH was.

High PTH basically means that more Phos and Calcium are being sucked out of your bones, which down the track can lead to brittle bones, easy fratures, breaks etc.. and this is bad. So, to lower the PTH the usual course is either the operation to remove the parathyroid glands that up the PTH, or meds like Sensipar, which also lower it. Obviously taking a pill is a lot easier than having your throat cut :)

Amazing. Sensipar.. another drug i don't think we have over here!
The op was no walk in the park thats for sure!
Logged
Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
RichardMEL
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« Reply #11 on: April 29, 2010, 08:24:28 PM »
Sensipar was only approved for use in Oz maybe in 2007 or 2008. I know I had to wait quite awhile before it was generally approved for use, and before hand I got a few scripts under special medical approval(and all that stuff). Haven't looked back since I got on it though. They sometimes claim I am a bit of a model patient.....
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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!
-Lady Noir-
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« Reply #12 on: May 01, 2010, 02:30:23 PM »
Oh i see! :)
When Mike chipped his hips, apparently his PTH was the highest they had ever seen.
Logged
Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
Stoday
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« Reply #13 on: May 01, 2010, 07:21:12 PM »
I got a telephone call last week to say to stop taking the Cinacalcet immeadiatly and take Phoslo instead. It turned out that my calcium level had dropped like a stone. Now I'm having weekly blood tests.

Maybe the Cinacalcet wasn't too good for me. I've not had a bad day since I've stopped taking it.
Logged
Diagnosed stage 3 CKD May 2003
AV fistula placed June 2009
Started hemo July 2010
Heart Attacks June 2005; October 2010; July 2011
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