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Author Topic: Sensipar is the Devil  (Read 4623 times)
beckums70
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« on: February 17, 2017, 05:52:25 PM »

So, my calcium levels have been hovering at barely too high for a few months now and my doctor started me on Sensipar to see if we can get it back down.  I've been taking it for about a week now and it is making me absolutely miserable.  Shortly after taking it my eyes burn like they are on fire from within, an hour or so in, I get nauseated,  by bed time I am aching all over and so anxious I can barely stay in my skin.  In the mornings my stomach is cramping horribly, and I have shooting pains in my stomach all day long.  I'm talking excruciating, stabbing pain that is nearly debilitating and gets worse if I eat anything at all.  I get hungry but no food is appealing to me, and when I do try to force food down I hurt so badly that I regret eating.

I can't find any information online about this drug and the horrible side effects it has, other than the pharma company's informational crap that minimizes the side effects and claims that few people suffer the same problems I'm having.  This afternoon I was even having sharp pains on the right side of my chest for a few minutes.  I've decided I am going to refuse to take this drug.  Life is too short to be miserable and with my calcium level being barely high I think I can get it down without Sensipar.  I think this drug should not be legal.

I read that it leaves radioactive metabolites in your system that are mostly eliminated by urinating.  While I do urinate a lot, my kidneys don't remove wastes very well, so how can they prescribe this primarily for ESRD patients with secondary hyperparathyroidism?  Where are the radioactive metabolites going if I can't eliminate them by urinating?

Have any of you had this kind of experience with this horrible drug???
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Charlie B53
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« Reply #1 on: February 17, 2017, 08:48:34 PM »


I started Sensipar long ago shortly after beginning PD.  NO side effects that I noticed.

My blood calcium has always ran high, at the 10.2 max level for the last 30 odds years.

A little over a year ago it started climbing, into the 11's, up to 11.7.  Not sure what caused it, Dr's had been trying all three Vit D's in attempt to get D to show on my labs.  all it did was raise my calcium even more.

Psuedo gout, crystals formed in ALL of my joints.  Can you say OUCH?  Screamingly!

Dr doubled my Sensipar, calcium began dropping, as low as 8.  Now taking TWO types of D in attempt to lower my pTh.

Still not sure of any side effects.  I am NOT 'Normal'.  I am a Vet and slightly (?) majorly, screwed up.

Oh Well.  Nothing to do but to go on, it ain't like I am going to ever give up.
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Charlie B53
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« Reply #2 on: February 17, 2017, 08:51:21 PM »


Although humans are to an extent very similar, we ARE individuals.  Our body chemistry is slightly different.  What may be perfectly tolerable to one may seem like acid and poison to another.

We have so much yet to learn.

Talk to your Dr.  There may be alternative medicine that may be substituted for Sensipar.  At least I certainly hope so.
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Michael Murphy
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« Reply #3 on: February 18, 2017, 02:14:59 AM »

I know one person with Sensipar sensitivity. He had severe reactions to the drug.  They had him stop taking it.  His PTH levels went through the roof. The rest of his blood test were equally bad. His doctor sent him to surgery to have Para Thyroid tissue removed and every thing became normal.







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« Last Edit: February 18, 2017, 05:06:48 AM by cassandra » Logged
kickingandscreaming
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« Reply #4 on: February 18, 2017, 04:36:19 AM »

I also had a bad reaction to Sensipar.  Became horribly depressed and completely lost my appetite.  Stopped it after a week and symptoms went away.
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Tío Riñon
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« Reply #5 on: February 18, 2017, 04:40:33 AM »

I have been taking Sensipar on-and-off since shortly after I started PD about 5 years ago.  I generally tolerated it, but needed to make sure that I took it with food.  Last year, it started upsetting my stomach and there was virtually nothing that would help me avoid the nausea and cramping or uncomfortable feeling in my lower abdomen/intestines.  My medical team at the clinic said that they weren't aware of any side effects.  They suggested various solutions including time of day (like just before going to bed), type of foods to eat with it (dairy) , using Tums in conjunction with my dose, and halving the dosage (2 - 30 mg tablets instead of 1 - 60).  Nothing was working and I avoided taking it or did so sparingly.  Who wants to make himself sick?!!

When I spoke to the pharmacist during my annual transplant clinic visit, she said that there are indeed side effects and some patients don't tolerate them well.  I inquired about other forms of the medication and she said there were none.  She just encouraged me to try other ways of taking it in hopes that I might find a tolerable solution.  I didn't and my PTH continued rising.  Finally my nephrologist pointed out that my PTH levels could endanger my being selected for transplant and I agreed to give the medication a try again.  I am taking it with food again (usually with something heavy like a pasta dish).  I am generally tolerating it and my levels are starting to lower.

I don't have a guaranteed solution for you.  Just continue to experiment with how you take it.  If you don't get your calcium under control, it can result in calcification which is described as a painful, debilitating condition.  Another option is the surgical removal of the parathyroid as previously mentioned.

Continue to talk to your medical team and seek help from others (2nd and 3rd opinions).  Hopefully you can find a solution that works for you.
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Rerun
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« Reply #6 on: February 18, 2017, 06:32:21 AM »

I have been on Sensipar for 10 years or so and no side effects.  My PTH and cal is perfect. 

I may start Prolia which may upset the apple cart.  Prolia helps build bone (hopefully)  In which case they would take me off my binders and make me eat lots of tums and calcium related food.  I'm sure I'd still have to watch my Potassium even closer.  I will have to ask if I will stay on Sensipar.  Anyway, Sensipar has saved me from Parathyroid surgery.

It is a shot every six months and costs $1,500 so I will only take it if my insurance approves it.

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Charlie B53
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« Reply #7 on: February 18, 2017, 03:59:55 PM »


$1500   !   Ouch!   sounds a like like the expensive shot that my Wife just had in her eye, AGAIN.  And the Insurance coverage Sucks, BIG Time.   You wouldn't believe how many $1000 co-pays we've already had on her eyes.   I should go back to school and take a lot more chemistry, go into business making that stuff.  And she still cannot see. May need yet another 'vitriotomy' however it is spelt.

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beckums70
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« Reply #8 on: February 19, 2017, 03:22:39 PM »

My calcium level is barely high and I have been able to lower it in the past by simply drinking more water and keeping my phos levels really low.  I am willing to do whatever I can dietary wise to avoid taking this drug.  The pain is unbelievable and every website I see on the drug does list side effects that are fairly common.  The shooting pains in my veins, the weakness and fatigue plus the abdominal pain are all too much for me to deal with.  I am completely debilitated by this drug physically and I've also noticed that I have the early signs of a gout flare in both feet since starting it.  I have not had a gout flare in nearly 4 years, since starting dialysis and my KT/V is 3.6 so I know it's not that my clearance is not good. 

Anyone found any kind of information about the radioactive metabolites in this drug and whether they're removed adequately by PD?
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LorinnPKD
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« Reply #9 on: February 20, 2017, 12:17:26 AM »

I had to start taking Sensipar late last year because my PTH and calcium were both at the high end of the range.

And I reacted, too.  Badly.  For me, it was sudden, violent vomiting within 1-4 hours of taking the drug.  Within 30 mins of taking it, I'd get heartburn and nausea and what I can only describe as a profound sense of dread.  And I'd just sit with the nausea until all of a sudden I looked like an outtake from The Exorcist and I'd be vomiting everywhere.  It was awful.

So I stopped taking it, and we tried experimenting with dropping calcium completely from my diet and then lowering my PTH with Hectorol in my hemo sessions.  And on Hectorol, I started losing gobs of hair -- like Lifetime channel cancer movie gobs -- and with some people Hectorol raises your calcium, and my calcium zoomed way up and out of range. So I was one of those people.  I should buy lottery tickets.

Because my calcium was out of control and we had no other options, I had to go back on Sensipar several weeks ago.  And it was AWFUL.  I tried eating lots, I tried eating nothing.  I tried taking it at night, I tried taking it in the morning.  And I'd stop three days in because I'd feel so ill, wait a few days, and start over.

After one very long night getting very up close and personal with my toilet from heaving into it at 4 a.m. and praying for an asteroid to end it all swiftly, I asked my doctor for an anti-nausea drug.  Zofran.  Tiny little white pills.  Zofran lasts six hours in your system, but the Sensipar hangs out in your system for 30-40 hours.  I quickly found that taking a sensipar, then a zofran, and then eating super-greasy hangover food got me through the week.  I still pee, so the five pounds I gained were probably straight butter.

I talked to my nephrologist again -- they'd just talked to their Sensipar rep and we compared notes.

Here's what I found:


- Sensipar hangs out in your system for 30-40 hours.  So when you take it on consecutive days, there's some overlap.  I would be generally OK on Day One of each attempt taking it, and then on Day 2 and Day 3 I would feel a kind of misery reserved for the truly wicked.

- If you can hang on for a week, your body is supposed to adjust to it -- and I found this to be true.  I had three days of awful nausea, then three more days of vague nausea and some prizewinning belching, and then two days of the occasional burp, and now I am fine.  Which is amazing, because the start of it was just the worst and I'd mentally decided to stop it and wait for the inevitable.

- Some people really do have issues with it, and the people who do are usually the people who have nausea issues otherwise (I get seasick, carsick, and it takes me like nine hours to shake off the nausea from anesthesia).  My brother has to take it, too, and he's never had a problem.

- One of the adjustment foods they recommended was frozen peanut butter sandwiches from the freezer aisle.  I had a lot of luck with homemade breakfast sandwiches with eggs, sausage, and even cheese(!) on toast.  I figured the Sensipar would knock out the calcium from that (and in my case I was right).

I'm really concerned about the sharp pains in your chest.  I had super bad heartburn and not sure if that's related.  Seems like once I hit Stage 4 or so, nausea never manifests for me without heartburn.



« Last Edit: February 20, 2017, 12:19:06 AM by LorinnPKD » Logged
Charlie B53
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« Reply #10 on: February 20, 2017, 03:37:31 AM »


Amazing story of persistence in spite of terribly adverse effects.  I have to commend you for your strength and determination.

I am one of the fortunate ones, having not noticed any of these effects, or at least if I do have any, they have been so slight that I blamed it on something else, like a bad taco maybe?

With your advise there may be hope for others.

Thanks,

Charlie B53
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beckums70
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« Reply #11 on: February 22, 2017, 04:50:35 PM »

I have been taking Sensipar and Zofran together from the very beginning, otherwise I would probably have been communing closely with my own toilet at all hours of the night as well.

The worse for me is within the first couple of hours after taking it.  The pain in my abdomen and chest is unbearable, and the shooting pains in my veins...well it's just the weirdest sensation I've ever felt.  Very unpleasant, to say the least.

I notice that I also get super anxious after taking it and that the anxiety does not subside for at least a day or so, and that's if I skip a day of taking it.  If I take it daily I am an anxious wreck all the time--irritable, jumpy, worried about nothing.  I'm just stuck with this awful feeling of impending doom that I cannot shake no matter what.  So the only way out of the side effects it seems is to take other drugs to combat the bad side effects fo the Sensipar: Zofran for nausea, Xanax for anxiety, Tramadol for pain....It seems like a merry-go-round of pharmaceuticals I'd rather avoid if at all possible!

I have not taken Sensipar in almost a week. 

Did any of you find that it changed your appetite for certain kinds of food?  For instance, I found dairy products inedible and could not even fathom eating pasta while on that medication. 

I really hope my labs are okay next month because I cannot bear this drug.  I can't believe anyone with such side effects was able to stick with it for 2 or 3 weeks!  Wow...That had to be rough.  i wouldn't be able to work if I did that.
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kickingandscreaming
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« Reply #12 on: February 22, 2017, 06:27:39 PM »

Quote
Did any of you find that it changed your appetite for certain kinds of food?  For instance, I found dairy products inedible and could not even fathom eating pasta while on that medication.

I, a foodie all my life, totally lost my appetite while on Sensipar.  I would dawdle over a small cup of soup for an hour.  And I had this pall of depression that felt very physiological.  All symptoms went away when I stopped the drug which I did after only a week.
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Charlie B53
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« Reply #13 on: February 23, 2017, 05:46:49 AM »


I should have taken more Chemistry in school.  Back then I had, and still have, the belief that we can synthesize most anything, tweaking the molecular compounds to add, or remove, side effects.   I am stunned that there isn't at least two other medications that could be used in place of Sensipar.

Then again, I also believe that there is a natural plant, one that can do even more than any man-made medication can do.  And most likely without any side effects.  But we Humans are so stupid we have forgotten most everything that we once knew. And instead of researching all the plant forms of life on this planet have given in to the Schools, Education, and the belief that Big Pharma can, and will, make us better.

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iolaire
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« Reply #14 on: February 23, 2017, 07:10:38 AM »

I guess I'm lucky, I'm in my fourth month of Sensipar and don't have side effects.  I take it during the day at lunch (my largest meal of the day) at the same time I eat.
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Charlie B53
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« Reply #15 on: February 23, 2017, 09:02:14 AM »


I must be very well Blessed.  So many things that cause problems for others  do not have any negative effect on me.  Not bragging, merely stating a Fact.  If I was not Blessed then I surely would have some of these problems.

On the other hand, there are many things that bother me a lot.  Like U think far too much.  I am somewhat of a mental case but here again, fortunately for me, I manage to keep it together and not kill those people around me that are complete idiots and morons.

Like taking Chantix to stop smoking, many poeple report severe mental issues while using the medication.  I am soo screwed up that I never noticed anything out of 'My' ordinary.

I must be one sick S.O.B.

I've always known that I am nowhere near 'Normal.'
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PrimeTimer
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« Reply #16 on: February 23, 2017, 10:35:24 AM »

It almost sounds like a reaction rather than side effect of the drug. Maybe you are only borderline and the drug is too powerful for you right now. It's almost as if it's giving you the symptoms of having TOO LOW of a calcium level. Reminds me of when I was given Synthroid for a borderline thyroid problem. After a week or so, I ended up feeling miserable instead of better. Doctor took me off the drug and I felt better. He said that since I was only borderline, the drug was too much for me. Hope you get this resolved and back to the business of living life.
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« Reply #17 on: March 30, 2017, 07:16:46 PM »

They tried to put me on Sensipar, even though my calcium is LOW.... I took it a couple of times and it messed with me, I can't tell how exactly because something/everything hurts all the time anyway and has been that way for a long long time.  I was noticing when I look my doctors up on Healthgrove, it tellls you who paid them when. and the ten drugs the doctor rx, I saw that when a drug like carvedilol was listed it listed what it was for. but when sensipar is listed (as it is for a lot of nephrologist, that and AMGEN are their lunch ticket) it doesn't list that it is for anything. 
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iolaire
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« Reply #18 on: March 31, 2017, 05:55:12 AM »

I worry for those of you that are sensitive to Sensipar how it will go when this is moved to IV.  I have to expect that may be more of a shock to the system as an IV when people get it the medicine and learn it doesn't work with their body (as compared to a pill forum).
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LorinnPKD
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« Reply #19 on: March 31, 2017, 07:06:06 PM »

I asked my clinic about this... The answer I got was that it's in your bloodstream, not in yo' belly, so it wouldn't react the same way?  Haha.

I've just been ordered to double my dose because the low dose isn't working.  It's just like starting over...
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