Anyone react poorly to Sensipar?

[kickingandscreaming]

My phosphorus has been running high, in spite of taking lots of binders.  My neph recently started me on Sensipar in the hope that it would lower my P levels.   I have also recently changed my PD RX for better clearance.

In the last week, that I've been on Sensipar, I have become very depressed and completely lacking in energy.  My "battery" starts out at 30% and drops from there.  I'm lucky if I can even get out of bed.  I have NO appetite for food.   I used to be a foodie and gourmet, and now I can barely force mysefl to eat anything--let alone prepare food.  I'm not nauseous, just totally lacking in interest.  Last night I had a cup of soup for dinner and I dawdled with it for a full hour and still couldn't finish it.   The only food that I seem to be able to get down is Greek Yogurt (a no no for phosph). I have a bitter taste in my mouth.

I feel weak and my muscles shake when I try to do anything physical.  I'm really scared.

PS. I took my temp and a couple of hours ago it was 100.5.  Now it's 100.3

[Kathymac2]

I have no advice about Sensipar having never taken it. If I felt as you describe, I'd give my doctor a call to see if dosage needs to be adjusted or if something else is going on especially since you have an elevated temp.

I hope you feel better soon.

Kathy

[kickingandscreaming]

Thank you, KathyMac2.  So do I.

[Simon Dog]

The FDA has recently issued an advisory for Sensipar regarding GI  bleeds.

[cassandra]

KaS have you seen a Dr? How are you?

Love, Cas

[kickingandscreaming]

I've been in touch with my neph and PD nurse.  I'm feeling a lot better this morning and my PD fluid was clear and my temp was normal this morning.  My nurse suggested I skip this morning's Sensipar pill.  So  I will.  And I will lay low today and she will follow up after speaking with my neph.  Thank you.

[Charlie B53]

Wow, I know we are all slightly different and the same med very often results in totally different effects on us.

I have been taking Sensipar for years.  I don't recal the reason but I was told to change taking mine to late evening instead of mornings.  Whatever that reason was it seems to work just fine.  Dr doubled my dose, IIRC it is now 60 or 80, I'd have to go look at the bottle to be sure.  Whatever, the result was my blood calcium which has hisotricall ALWAYS ran high, at or slightl over the max range listed by all the labs.  Anyway, it has come down, just UNDER 9.  Outstanding.  No more crystalization in my joints!   So for me, Sensipar has worked VERY well.   

Will your Dr and Nurse agree to let you stop the med for say one week to see if or what the difference is in your health?   This could be a worthwhile test.

[kickingandscreaming]

Will your Dr and Nurse agree to let you stop the med for say one week to see if or what the difference is in your health?   This could be a worthwhile test.

So far I'm stopping for the day.  We'll see what they tell me.  I don't know a bout a GI Bleed (from Simon Dog), but I am crampy today.   My PD fluid was clear as a bell last night so I'm not contaminated.   I don't know if crampiness is related to a GI Bleed or something totally unrelated.

[Kathymac2]

Just to throw it out there - I'm just getting over a c diff infection that started two months after I had my pd catheter placed. I felt much like you describe and then the diarrhea and gi bleeding started. I was hospitalized for two days and discharged on flagyl for twenty more days.  I'm still not right.  No appetite, no energy, on-going gi problems.

If you start up with gi symptoms (diarrhea) be sure to get checked for c diff asap. I think you mentioned your husband battled with c diff so it's likely you were exposed.

I don't say this to add to your worries, but just to give another perspective.

[kickingandscreaming]

I don't have a husband so I haven't been exposed to C. diff.   I don't have diarrhea but I will be vigilant if I do.  I'm more constipated these days and burpy and inappatent.

[Simon Dog]

  I don't recall the reason but I was told to change taking mine to late evening instead of mornings.

it is recommended that Sensipar be taken a number of hours (forget the number) before the Pth blood draw in order to obtain an accurate result.

[cassandra]

KaS I do hope you'll find out soon what the cause of your symptoms is.

   


Love, Cas

[kickingandscreaming]

Thank you Cass.  I think I am having an adverse drug reaction coupled with a stomach bug.  I am very sensitive to drugs, and it's not the first one that I can't handle.  I only hope there is some other way to get my phosph. down.  It used to be on target -- until it wasn't.

[Simon Dog]

MDs are under financial pressure to prescribe Calcitrol instead of Paracalcitrol for cost reasons.   I think it's a bundled drug, so it can fall under clinic policies.  I know the FMC policy is "Calcitrol first, approval required for Paracalcitrol".

So, if you are being prescribed the Calcitrol without the Para and not meeting goal, ask your MD why you are getting the cheap stuff.     If you are told that both are equally effective, ask if you doc has read https://www.ncbi.nlm.nih.gov/pubmed/12631365

[KatieV]

MDs are under financial pressure to prescribe Calcitrol instead of Paracalcitrol for cost reasons.   I think it's a bundled drug, so it can fall under clinic policies.  I know the FMC policy is "Calcitrol first, approval required for Paracalcitrol".

So, if you are being prescribed the Calcitrol without the Para and not meeting goal, ask your MD why you are getting the cheap stuff.     If you are told that both are equally effective, ask if you doc has read https://www.ncbi.nlm.nih.gov/pubmed/12631365

Interesting!  I'll keep this in mind if my PTH doesn't go back down in my upcoming labs.  It was down around 300, then they reduced my calcitrol and PTH shot back up to 1200 in a month.  I asked that I be put on 0.75mcg again.

[Charlie B53]

I''m taking the 0.25 calcitrol.  I will have to note my pth and see.  Didn't know all this.

Thanks!

[LorinnPKD]

I'm reacting terribly to sensipar, but in a different way. I tried taking the lowest 30 mg dose at different times of the day, with different food (some people swear by peanut butter).  Every time, I'd be fine for a couple of days and seemed fine but then there was tremendous, sudden, violent barfing.  Like up all night.  Or sometimes after lunch.  And it would always be preceded by terrible heartburn and what I can only describe as a profound sense of dread.

My doctor prescribed it to help me get a handle on my PTH and calcium (both hovering around the high end of normal range) and for the extra kick in bringing down phosphorus (mine is normal right now, thanks to renvela).

Oh: You need to wait 12 hours between taking it and getting a PTH draw for an accurate reading.  My doc said to just skip it that morning for my afternoon draw and take it the next day.

I've stopped for now with my doctor's blessing.  My fantastic dietician says lots of people react poorly to it.  I'm on hemo and so they're adjusting for it with hectorol for the PTH.  The calcium's still a problem but I have dropped all dairy and any foods with more than a tiny bit. 

I hope you're having better luck.

[KatieV]

Yikes!  My dietician recommended taking Senispar at night as it can cause "an upset stomach".  Didn't know it could be that severe!

[kickingandscreaming]

For me, it caused a total loss of appetite.  I'm off it now but my doc wants me to try every other day.  No one said anything about timing ( in rel. to bloodwork).

[LorinnPKD]

Yikes!  My dietician recommended taking Senispar at night as it can cause "an upset stomach".  Didn't know it could be that severe!

It is for some, but not for everyone.  Someone else at the center is taking multiple times what I was taking and is fine. My sibling is taking the same dose I was taking and he's doing fine, so it seems like mileage really does vary on this one.