Do you do use Sensipar

[Roadrunner]

Hi,

How many use Sensipar?  Have you had problems?
Before starting NxStage the doctors tried to put my husband on Sensipar twice.  He started this and then I saw on the Sensipar site their safety notice.  We then refused to take it since his calcium was never higher than 8.3 (usually lower). The "for health professional" part of their site has the following warning.

Important Safety Information
Sensipar® lowers serum calcium; therefore, it is important that patients have a serum calcium ≥ 8.4 mg/dL when initiating therapy. Significant reductions in calcium may lower the threshold for seizures. Secondary hyperparathyroidism patients, particularly those with a history of a seizure disorder, should be carefully monitored for the occurrence of low serum calcium or symptoms of hypocalcemia. The most commonly reported side effects were nausea and vomiting.

The doctors said to ignore this.  I am wondering what results others have had using Sensipar.

Roadrunner







EDITED: Fixed topic title error-kitkatz,moderator

[goofynina]

I currently take 30mg daily and my Calcium is at normal levels    (and thats about the only thing at a "normal" level too)

[KT0930]

I was on Sensipar for about 5 months, as my calcium was normally in the 8.5-8.8 range. I had not heard of any of these warnings about calcium, though. I was taken off of it because I was having nausea and daily vomiting with it.

[Joe Paul]

I take 30 mg of sensipar on my off days of dialysis. My calcium runs around 8.5 -9, have had no problems with getting sick from them.

[jbeany]

My calcium was always high when I was on it.  It didn't work more than a couple months for me anyhow.

[goofynina]

Quick question now that we are on the subject of calcium, i wonder what the hell is making these calcium deposits develop in my stomach, they hurt like hell and i get NO relief from the pain,    I wonder if the Sensipar has anything to do with it?  My neph just keeps asking me if i want pain killers 

[Roadrunner]

Goofynina,

Do you mean calcium deposits below the skin on the stomach or in the stomach itself?  If it is on the stomach and the clothes rub they might be able to surgically remove the deposits.  I don't know that I would want that done if it was inside my stomach.

[goofynina]

They are underneath my skin (and on my nerves, literally)  they hurt so bad   I know i have to see a surgeon but i am scared 

[kitkatz]

Go see the surgeon!  Do I have to bring the stick out?

[aharris2]

Hi,

How many use Sensipar?  Have you had problems?
Before starting NxStage the doctors tried to put my husband on Sensipar twice.  He started this and then I saw on the Sensipar site their safety notice.  We then refused to take it since his calcium was never higher than 8.3 (usually lower). The "for health professional" part of their site has the following warning.

Important Safety Information
Sensipar® lowers serum calcium; therefore, it is important that patients have a serum calcium ≥ 8.4 mg/dL when initiating therapy. Significant reductions in calcium may lower the threshold for seizures. Secondary hyperparathyroidism patients, particularly those with a history of a seizure disorder, should be carefully monitored for the occurrence of low serum calcium or symptoms of hypocalcemia. The most commonly reported side effects were nausea and vomiting.

The doctors said to ignore this.  I am wondering what results others have had using Sensipar.

Roadrunner

EDITED: Fixed topic title error-kitkatz,moderator

Our doctor, too, is not hung up on the number. He is; however, quite concerned for symptoms. As long as Rolando remained asymptomatic and there was a reduction in pth levels, he remained on Sensipar. It has been 30 mg once a day, then 30 mg every 48 hrs, then back up to once a day. At one point, some symptoms did develop - twitching in all of his extremities. The Sensipar was temporarily discontinued and calcium supplementation begun (his level was just under 7!). Once it got above 8, Sensipar was continued at once every 48 hrs.

[RichardMEL]

Well I have just started on Sensipar so I am very mindful of watching for reactions or side effects. I got a big printout from the pharmacy with the consumer information and all the warnings about seizures, low calcium levels and all that. My calcium is around 2.5 (I'm not sure what the measure is of that) which is just on the limit of normal range down here but my PTH has been rising so we're trying me on sensipar to hopefully lower the cacium a bit and PTH and delay the need for a parathyroidectomy....

but I am watching myself very closely for any changes!!!

[Jess21]

I started sensipar a few months ago.  The dietician said they'd watch my calcium levels, but that I guess it was worth the risk because my PTH was over a hundred.  So Way over she thought it was incorrect.  Especially since I am only 21 they were concerned....but now it's below 100 again.

[Zach]

According to the National Kidney Foundation (U.S.A.), people on hemodialysis should keep plasma levels of intact PTH between 150--300 pg/mL  (16.5 pmol/L--33.0  pmol/L).  Too high as well as too low is bad.
 

[twirl]

I could not tolerate the sensipar and have had that thryoid surgery....would have been better off if I could have taken the medicine

[RichardMEL]

Well I've been on the sensipar (30mg) now for 3 months with no side effects and the results have been tremendous. My calcium has slipped into the renal normal range down here... Last was 2.16 so they've upped my calcitricol a bit and now it's 2.24 which they are happy with. PTH is down from 57 or to 39, and my phosphate is 0.89 "well controlled" according to the doc and he's very happy. I'm very happy because they're staying away from cutting my neck!!! All thanks to the lil green pill

[twirl]

do all you can do to avoid the neck slitting surgery
was not a good experience

[KR Cincy]

I'm on 60mg of Sensipar and haven't had any real side effects that I'm aware of...will find out tomorrow how the numbers are looking.

[angela515]

I was on 60mg of Sensipar daily while on dialysis, my PTH and Calcium kept raising and lowering and then i got my transplant and a few weeks after the transplant my PTH was still high and with a parathyroid scan done my para was still swollen, so I had a parathyroidectomy, twice in 2 days actually, but all went well and I would do it agaian. No big deal.

[RichardMEL]

My PTH is now down to 30.8. Sensipar rocks

[cambonesegirl]

I'm post transplant and I'm on 30 mg twice a day. I take it twice a day instead of all at once because it upsets my stomach. I thought transplant was suppose to fix this  . I hope it goes down soon or I will have to have my parathyroid glands removed. I want to avoid that as much as possible, I've had enough surgery in my lifetime.

[MIbarra]

Twirl,

Why was your surgery such a bad experience. Do tell..

[American Airman]

Sensipar works for me...

But It makes me vomit.

What I do is split up my dosage.

I only feel hungry twice a day, so I have to eat enough to "absorb" the Sensipar in those two meals.

[twirl]

Mibarra just saw your post
well, yes it was a bad experience--- in hospital for two weeks---- my heart stopped once or twice-----I kept telling my kidney doc that I love him--- he usually has no sense of humor----- no one reallly likes him so he should have been proud-----now my calcium levels are very low, I have a scare across my neck, I think it will get less noticeable as time goes on, my labs are so much better but I do not think I feel better yet---sensipar just was not for me----- I got every side effect-----you have one hell of a sore throat and my voice has changed----- makes my son laugh----
I can not tell much but I can some.....I got newmoanya and high fevers ---- I think that is not usually the case---- ( if I check spell check my computer goes back to my home page) My animals were beside themselves when I finally made it home..If you need the surgery just make sure you have done all you can do before taking the plunge...........and let me know..... I worry about you... I really think some IHD members have had a better experience than I did

[jbeany]

They put me back on Sensipar in the hopes that it would work in tandem with the Hectorol.   No such luck.  Last PTH was 1800 - it actually went up 800 with the Sensipar added in.  Now they are supposed to be scheduling me for surgery, if my endocrinologist and nephrologist can figure out which one is actually going to make the referral.  I ready - the Sensipar has started to affect my stomach, and I've given up on taking it so I can make it thru the day without throwing up.

[MIbarra]

Thanks for explaining Twirl. I was glad to get the transplant before I needed to have it done, but my doctor had already told me it was probably down the road!

Jbeany, sensipar made me so absolutely sick, I just refused to take it anymore and quit. I could not teach and take it at the same time. Every 30 minutes, I was out on the porch of my classroom either vomitting or trying to keep myself from vomitting. I rarely have any reaction from medications and I've had my share of meds, but sensipar I just could not handle, even the least amount.