I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Cordelia on February 22, 2012, 01:35:38 PM
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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?
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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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... I'm so intorlerant to Vitamin D...
You delicate little peach. :P
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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......
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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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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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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