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Author Topic: Will The Extra Calcitriol Really Help My PTH?  (Read 3333 times)
Cordelia
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« on: February 22, 2012, 01:35:38 PM »

I have a question to ask you all: My PTH has been up. All the rest of my blood lab levels are fine including my phosphorus.  All but that stupid PTH. This has been an issue for me off and on since the beginning of D 1.5 years ago. I have been on Calcitriol for a year now, one pil post dialysis which is 3 times weekly.

My calcium is low. One of my nephs has prescribed taking more Calcitriol for me, taking it DAILY instead. He says it should work and make the PTH go down.

I ask this, how many of you take this med daily and does it really help?

My neph mentioned that he might want to put me on a med specifically geared for PTH, called Sensipar.  And unfortunately, this drug he mentioned is not covered under my insurance (I'm in Canada) so I would most likely turn it down since I cannot afford it at all.

Oh, he also mentioned IV calcitriol if I wasn't going to be able to tolerate the extra pills since I'm so intorlerant to Vitamin D and it horribly constipates me however so far touch wood, almost a week later, I'm not having any problems on the extra pills.  So at least I don't have to worry about IV calcitriol.  I guess I'll see what happens on my labs next month how it works.

Any advice?
« Last Edit: February 22, 2012, 01:39:27 PM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
msrosefromms
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« Reply #1 on: February 22, 2012, 02:07:32 PM »

My PTH also was high. They started me on Calcitrol Mon, Wed, Fri. Then it went to every day. Then they made it 2 pills a day, added sensipar, once a day. . Then my cakcium went dowm, so they said take a Tums after every meal.  My lab work just came in and they reduced the calcitrol to one pill every day and the sensipar to Mon, Wed, Fri.
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Less than 15% kidney function Oct 2009
1st PD Catheter July 2010
2nd PD Catheter Aug 2010
Started PD Oct 10 on Baxter Home Choice
Had to switch to Liberty Cycler Apr 2011
MooseMom
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« Reply #2 on: February 22, 2012, 02:10:30 PM »

... I'm so intorlerant to Vitamin D...

You delicate little peach. :P
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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."
Cordelia
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« Reply #3 on: February 22, 2012, 03:23:57 PM »

Unfortunately I can't take Tums. Guess what it did to me, it sent me to the bathroom about 5-6 times during my sleeping hours, it caused me to urinate excessively. Plus, it caused severe havoc with my intestines causing me to be beyond horribly constipated to the point I felt like I was giving birth to a baby out of my a$$        :(     I am so intolerant to Tums, I can't ever go on them again. I've been on Renagel for over a year and my phosphorus levels are great, no need to increase my binders my neph said.

I'm really hoping the calcitriol daily will help.  So far in the 1.5 years of my D journey, nobody has ever said to me that I may need to have my parathryroid gland removed.    I don't even know if they'd even attempt to take that out with being waiting for a transplant.  Wouldn't the PTH come down once a transplant occurs I wonder?

Sorry, so many questions I have......
Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Sax-O-Trix
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« Reply #4 on: February 22, 2012, 04:17:37 PM »

I took calcitriol for a couple of years prior to my preemptive transplant .  I didn't know anything about PTH levels back then, I was really only concerned about my creatinine, GFR and potassium levels. In fact, my neph team never mentioned my PTH levels until my appointment last week!  Something must have been a bit off because the current neph recommended that I drink milk (something I avoided on the renal diet for years!).

My insurance company wouldn't pay for the calcitriol, btw.  They considered it a "vitamin"!!!  I seem to recall it costing about $40 a month and I think I only took three pills a week...  12 vitamin pills for $40! 
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Preemptive transplant recipient, living donor (brother)- March 2011
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« Reply #5 on: February 22, 2012, 04:22:20 PM »

I took calcitriol and it did succeed in bringing my PTH levels down... at first. Then it stopped working and they upped the dose. Unfortunately it's a really delicate balance for me with calcitriol. Just a little too much and I end up with hypercalcemia, which is no fun at all and dangerous to boot. Before my parathyroidectomy I really couldn't take it at all, at least not enough to be effective.

Now that I've had my paras out I take .25 mcg per day and it seems to be perfect. PTH, calcium and phosphorus all within range.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
Cordelia
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« Reply #6 on: February 23, 2012, 02:57:46 PM »

That's the same dosage I'm currently on .25 mcg per day.  I'm really curiou to see if it will help.    I can see why the insurance might say it's a vitamin.     

There always seems to be one or two doctors concerned with 'one' thing and another nephrologist concerned about something else........ see, I see a different neph every month. A handful of them share and rotate in our unit so I never know month to month who's coming to visit. Although I do know now 3 months in advance, whos's coming, I managed to find that out.      ;D
Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
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