Is anyone on Sensipar and is it working?

[Mom3]

My son just got a prescription for Sensipar to control his PTH which has soared. Medicare is giving us a hard time about filling it--having to either get doctors to write letters or to change plans...

Just wondered what other people's experience with this med has been? Does it really work, have awful side effects etc. (He asked me to ask!

Thanks, 

Mom 3

[kitkatz]

I have not had any real side effects with sensipar other than a sometimes upset tummy.  Be sure to take it with food.  He should be fine.

[angieskidney]

Is that to lower the PTH? I wasn't put on anything but instead they took all my parathyroids out.

[BigSky]

They put me on it and it seems to be working.  They are still trying to adjust dosage as it is either to low or to high, hardly ever where it should be.  PTH went from the high 900's down to around 150 on 90 when I intially started.  Myself I have never had a problem or any side effects taking it.

[Mom3]

Yes Angie> It is for PTH. My son had most of his out but the piece left in his neck grew and the PTH has shot back up to 5100.  If you have problems at a later date (shouldn't if ALL were removed!) maybe you can get that in Canada?

Sounds like it would be worth paying out of pocket for if it comes to that--hopefully it won't--because like most of these new drugs it is expensive.

He will be glad to hear no bad side effects and most important, it works!

Thanks, Mom 3 (Doris)

[Rerun]

I use it and it works.  It better because I'm not going to have my pth's out.

[kitkatz]

Wow! you son has me beat in the PTH department, however do you measure it differently than in the states? Or are you in the states? 5100 is ridiculously high.  They are screaming at me at 1500.

[Mom3]

No. It is as bad as it sounds...He just got labs back and does need this med! Thank goodness his new clinic is trying to get it for him.

Mom 3

[Black]

My son just got a prescription for Sensipar to control his PTH which has soared. Medicare is giving us a hard time about filling it--having to either get doctors to write letters or to change plans...

Just wondered what other people's experience with this med has been? Does it really work, have awful side effects etc. (He asked me to ask!

Thanks, 

Mom 3

Sorry, don't know about Sensipar.  My husband takes Hectorol.

Depending on his latest blood work, either every other day or every third day.  Over the months he has been on it he has, so far, had no side effects.  He's not yet on dialysis, not old enough for Medicare, and we haven't been able to get insurance for decades, so he gets it free from the company.  He fills out the paperwork at the Neph's office, gets the Neph's signature, mails it to the company, and they send it to the Neph's office for him to pick up.  The time between when he mails the form, and the call from the Neph's office to tell him that the Hectorol is there, is usually less than two weeks.

The contact information for the company is on the Hectorol website.

http://www.hectorol.com

BTW, despite the problems, you don't want ALL of the parathyroids removed.

Lorelle

[Epoman]

Is that to lower the PTH? I wasn't put on anything but instead they took all my parathyroids out.

No they didn't take ALL of your paras out, you would be dead, you need SOME parathyroid function in order to live. That is why they freeze what ever they take out in case they need to put some back, if they took out to much. Most people have 4 parathyroids, some however have 5 or more. If they did not put a piece in your arm, they left a little piece in.

[goofynina]

For years i have been getting my meds at Longs Drugs UNTIL i got a prescription for Sensipar,,,ohhh man, you would think i was trying to buy crack or something,  it is only avaliable in mail order, i have never had to deal with mail order before so we went round and round,  just a bunch of mumbo jumbo, but i have been taking it for a month and i dont feel any different, but i did find out that i must take it with a meal cuz it makes me very nauseous

[kitkatz]

I had my Blue Shield Insurance cover the costs of the Sensipar. I have a ten dollar copay with it. I have another pharmacy which fills the prescription through mail order, Pretty easy to do.  They send the prescription and I pay them over the mail Cool, huh.

I now have prescriptions through Kaiser and Blue Shield.  Kaiser would not cover the Sensipar or the Fosrenol, but Blue Shield will. Weird, huh?

[angieskidney]

Is that to lower the PTH? I wasn't put on anything but instead they took all my parathyroids out.

No they didn't take ALL of your paras out, you would be dead, you need SOME parathyroid function in order to live. That is why they freeze what ever they take out in case they need to put some back, if they took out to much. Most people have 4 parathyroids, some however have 5 or more. If they did not put a piece in your arm, they left a little piece in.

seriously? Because they told me I had 4 parathyroids on my throid gland and they took all 4 out. They don't give much info ... but that is all I have known.

[Mom3]

Can't they give you a medication to replace parathyroid function?

I thought one of the doctors we talked to prior to the PTH surgery said so...

Since my son's Medicare is primary, if the Medicare plan won't cover a medication, then the private insurance won't kick in because Medicare didn't pay!!  Very frustrating since we clearly don't need this delay in starting this medication...

Mom 3

[kevno]

In the UK for high PHT i am been taking One-Alpha (alfacalcidol) Which as worked in lowing my PHT. But I had my parathyroids out in 1991. They left one quarter of one in my neck. My PHT did go over 1000 but it is now 450.

Kevno

[BigSky]

Since my son's Medicare is primary, if the Medicare plan won't cover a medication, then the private insurance won't kick in because Medicare didn't pay!!  Very frustrating since we clearly don't need this delay in starting this medication...

Mom 3

Check with his doctor about free samples.  I have got 30 days worth of samples from my doctor many times.  The last time when I got some that had an entire cabinet full of just sample packs of sensipar.  If the doctor doesnt have any he should be able to get some since the drug is fairly new and the manufacture is pushing it pretty hard.

[Mom3]

Thanks great idea!

We see the same practice and I very conveniently have my first appointment with them tomorrow. What better way to start off than to ask for a favor!! I'm planning to do it! I do think he needed to start this med months ago and can't afford to wait for all this red tape to get worked out. It's worth a try...

[Mom3]

  The clinic gave my son 7 days of sensipar--a free sample-- yesterday. Thanks for that advice! I just assumed if they had it, they would have given it, especially with his PTH level.

Hopefully we'll hear from Medicare by the time that runs out or we can get another sample??? We'll certainly ask!

Now if it will just help him the way it has others. As you can tell from our posts, many times his luck has been none too good!

Mom 3

[angieskidney]

In the UK for high PHT i am been taking One-Alpha (alfacalcidol) Which as worked in lowing my PHT. But I had my parathyroids out in 1991. They left one quarter of one in my neck. My PHT did go over 1000 but it is now 450.

Kevno

I am taking One-Alpha (alfacalcidol) too I wasn't sure if that was used to lower PTH or what .. but my levels are good.


I never knew about sensipar til this board tho.

[SpeedFleX]

I started taking it a couple of months ago. But before the operated on me took out 4 and it still didn't go down so they wanted to slice open my chest to look if maybe I have more down lower. I said NO THANKS went and the doc in dialysis then told me that they have a new drug called mimpara aka Sensipar thats lowers it. Well it was new to germany anyways.


I take it everyday but sometimes it seems to work and other days it doesn't. I also noticed that when it does work my phosphate is also good and when it doesn't work my phosphate is high!?


This is what its been like the last 2 months 1800 - 100 - 1600 -101 -560 - 123

[angieskidney]

I started taking it a couple of months ago. But before the operated on me took out 4 and it still didn't go down so they wanted to slice open my chest to look if maybe I have more down lower. I said NO THANKS went and the doc in dialysis then told me that they have a new drug called mimpara aka Sensipar thats lowers it. Well it was new to germany anyways.


I take it everyday but sometimes it seems to work and other days it doesn't. I also noticed that when it does work my phosphate is also good and when it doesn't work my phosphate is high!?


This is what its been like the last 2 months 1800 - 100 - 1600 -101 -560 - 123

Wow I wonder what makes it work sometimes and not other times?

I wish I knew there was a drug. My mom didn't want me to have my parathyroids taken out.

[Mom3]

I know exactly how your Mom felt, Angie, and if I'd had any idea the calcium IV could cause the problems it did and that the operation wouldn't work, I don't think I'd have driven my son to the hospital!! (If he'd known he wouldn't have had the surgery anyway.) At least the complications with the IV seems to be pretty rare. No other posts where that has happened so far.

My son says the new clinic he has changed to doesn't give hectarol (sp?). He was on that at his old clinic, and had high PTH, but removing the hectarol is why it has soared to "the highest PTH" his doctor has ever seen--and that is AFTER parathyroidectomy!!

He is now taking the Sensipar and I really hope it helps him the way it has some other folks. More good news, Medicare has said they WILL cover it! 

Mom3

[angieskidney]

I know exactly how your Mom felt, Angie, and if I'd had any idea the calcium IV could cause the problems it did and that the operation wouldn't work, I don't think I'd have driven my son to the hospital!! (If he'd known he wouldn't have had the surgery anyway.) At least the complications with the IV seems to be pretty rare. No other posts where that has happened so far.

My son says the new clinic he has changed to doesn't give hectarol (sp?). He was on that at his old clinic, and had high PTH, but removing the hectarol is why it has soared to "the highest PTH" his doctor has ever seen--and that is AFTER parathyroidectomy!!

He is now taking the Sensipar and I really hope it helps him the way it has some other folks. More good news, Medicare has said they WILL cover it! 

Mom3

oh that is very good! Ya I have not had the problems your son had. I have had ALL 4 of my parathyroids taken out and now my pth is normal.

[alaskagirl]

I started taking Sensipar about two months ago.  My PTH was at 1200 and my neph put me on Sensipar right away.  He said it was preferable to having the parathyroids removed.  Within two weeks my PTH had dropped to 260, so everyone is pleased that the Sensipar is working.  I take one pill after my evening meal and haven't had any bad side effects.

[angieskidney]

Wow I wish I had been offered that But is it so bad that I had ALL my parathyroids removed? What is the down side of that? I have always wondered that!