Lowering PTH--and keeping it down

[RightSide]

When I was diagnosed with ESRD for the first time, my PTH was quite high (over 1,000), whereas the reference range on that scale is between 100 and 300.

My neph says he has an algorithm for computing how much medication to administer to lower PTH.

So my neph put me on a large dose of Zemplar, administered IV during my dialysis sessions 3x/weekly.  And after a couple of months, my PTH went down to only 360, almost within the reference range.  With this "good news," my neph halved my dose of Zemplar without telling me.  And within a month, my PTH shot back up to 940.  Then he increased the dose of Zemplar again.  And my PTH started dropping again.

So with my neph's touted algorithm, my PTH seems to be yo-yoing up and down:  PTH up, more Zemplar, PTH down, less Zemplar, PTH goes back up, more Zemplar, PTH goes back down, less Zemplar....

It seems to me that an algorithm like this one which does not take into account past history is flawed.  Just looking at the most recent months' worth of blood tests can cause just these kinds of wild swings in dosing.  It ought to use the moving average of all the blood tests over the period of a year.  And just weight the most recent numbers more heavily, without throwing all the previous numbers away.  Or something like that anyway!

[TeenHatesDialysis]

My daughter is having lots of problems keeping her pth down. It is also over 1000. It was down below 400 and shot up again. She takes Sensipar. Although she takes sensipar daily, the dialysis center has requested that she bring he sensipar in and take it while on dialysis. That would decrease her dose to 3 times per week instead of daily.  She is really pretty responsible about her medications, but I think that the Nephs don't think she is taking it because her numbers went so high.

Do others have the pth yo-yo issue?  Has anyone had to switch from sensipar to another med to keep their pth down??

Any info is greatly appreciated. Thanks!

[willowtreewren]

Susan,
My husband is on Sensipar. His PTH is slowly dropping. But the neph told him that it should NOT be taken every other day. It was really bothering hsi stomach when he started taking it and it was the lowest dose. They told him that he MUST NOT cut the pills in half and MUST NOT alternate days.

Fortunately his reaction has abated without worrying about a lower dose.

Rightside, I would definitely ask pointed questions about the swings and the dosing. It seems like more gradual reductions might be a better approach so you aren't experiencing those swings.

Aleta

[RichardMEL]

Gee I don't have much to add to this. I've been on Sensipar 30 (just one/day) for over a year and brought down my PTH from ~70 to 24 (oz figures) and it's been very good from that point of view with no side effects.

The only thing I've been told is to NOT take it anytime near having calcitricol because there supposedly is some kind of interaction there with the calcium in it - so I take it at night with my evening phosphate binder and my PTH has been pretty stable for ages now and I've been VERY happy with sensipar.

[TeenHatesDialysis]

Thanks for your input.  I will definitely be asking a lot of questions today as they are cutting the Senipar to every other day and giving it to her while she is on dialysis. She gets her calcitrol on dialysis and this is when RichardMel's docs said to avoid taking the Sensipar.

UGH. I understand why they call it a "Medical Practice" more each day, but I wish they would stop practicing on my daughter. These docs do this for a living and get paid well, you would think that they would be know at least as much as the dialysis patients.

  Thanks for letting me rant and thanks again for your input.

[BigSteve]

I've been taking Sensipar for a while now and my PTH is down in the 100s. I take it daily, but I am up
to 90 mgs. The problems with the drug is the cost, extremely high if you don't have good drug
coverage, and for myself heartburn and loss of appitite. I have, on my own, alliviated the heartburn
be taking a Zantac everynight before dinner, then the Sensipar during dinner. This helps quite a bit.

[jbeany]

I was on sensipar, and it stopped being effective.  I was at 2000.  One of my para glands had swollen to the size of a cherry.  No amount of meds will stop that.  I had surgery, and I'm still bouncing up and down, but it was at 400 last time they checked.  I'm frustrated because in spite of all the issues I've had with my PTH, once it hit a normal number for a month, then they stop checking it every month.  I won't know what it is for 3 months in a row now.  So it could be back to 1000, and they won't know.  I had to cut my calcium meds in half, and my phos jumped this month, so I want to know if my PTH is changing as well. 

I'm on hectorol now.  The sensipar was making me throw up anyhow.

That's one thing I miss about home dialysis.  I filled out the lab orders for myself, and drew the blood in the correct vials.  I could order a PTH every month if I wanted to, without waiting for the doc's approval!

[greco02]

Would someone please explain how the elevated parathyroid relates to ESKD?  What are the symptoms beyond the elevated blood test result? How is it treated?  What happens if it is untreated?

[aharris2]

Elevated pth is no trivial matter. Uncontrolled, it can be crippling.

What happens if it is not treated? The calcium gets ripped out of your bones, giving you osteoporosis and putting you in danger of breaking your bones (read some of Epoman's story, he was devastated by it - maybe someone can post a link?) with little ability to heal them.

Symptoms? I know of one - bone pain. The loss of calcium apparently hurts. I don know if there are others...

Treatments? Medical and surgical. There are medications which can control pth in some people and they are mentioned in this thread. If this fails, they can remove most of your parathyroids. They leave you a small portion of one because they do serve a purpose in bone health - something which is accomplished at a pth level of 150-300.

Greco, that's a partial answer, I'm sure others will supply more info.

I read threads like this and I gotta shake my head. The doctors don't seem to have any sense of urgency about pth level. I don't understand why they play games with meds - "they seem to be working, so let's cut your dosage." How about let's not, because I am really fond of my bone density!

Rolando developed osteoporosis because of poorly controlled pth levels. He broke his leg almost two years ago with osteoporosis as a contributing factor. He went for many months with almost no healing (pth still out of control, they were trying sensipar, to no avail.) The neph finally decided that it was time for the parathyroids to go. After the surgery, his pth has become stable in that 150-300 range, and his leg began to heal. A year and a half after breaking it, it was finally declared healed and his osteoporosis is reversing itself - a year after the surgery he has recovered some bone density. I only wish that we had known earlier how serious an elevated pth is and how fast it can do its damage.

Jbeany, can you share your concerns with your neph and get him to order the test?

[Rerun]

Sensipar works for me.  I have been told to take it at least 9 hours before dialysis because dialysis will clean it out of your system.  But, that was by a dietition not a Nephrologist.

[peleroja]

PTH up, more Zemplar, PTH down, less Zemplar, PTH goes back up, more Zemplar, PTH goes back down, less Zemplar....

I know that feeling.  With me, it's Calcitriol (pill).  PTH up, I take the Calcitriol, PTH down, they take me off the Calcitriol.  Usually follows about a 6 month pattern. 

[skyedogrocks]

Rob's PTH has been steadily increasing each month (was up in the 400's).  His Neph put him on Hectorol which did nothing for him.  He then put him on Sensipar 30 mg and it wasn't coming down as fast.  He is now on 60 mg and it's working for him.  However, he has been throwing up more which we are puzzedl with.  After hearing from one poster that they had this problem with Sensipar, I'm going to talk to Rob.  I think that is the problem!  He was never a person to throw up with this disease, maybe once every 2-3 weeks.

Thanks!

[greco02]

Jim's PTH is under 100 but over the 'normal' according to his lab values.  Jim has Acromegely which effects his growth hormone and contributed to his ESKD.  First the diabetes then this. His endocrinologist is nearly useless as far as I can tell and the specialists for his condition are in L.A. and the healthplan will not pay for us to go out of the group for care.  Either way he has decided he won't do dialysis or a transplant.   He does loose his balance a lot so if the PTH numbers grow will will have to do something about it.  If he gets osteoporosis then falls and breaks something he will really give up.  Thanks to everyone who helps with info and support.   I am addicted to this site.   

[jbeany]

Rob's PTH has been steadily increasing each month (was up in the 400's).  His Neph put him on Hectorol which did nothing for him.  He then put him on Sensipar 30 mg and it wasn't coming down as fast.  He is now on 60 mg and it's working for him.  However, he has been throwing up more which we are puzzedl with.  After hearing from one poster that they had this problem with Sensipar, I'm going to talk to Rob.  I think that is the problem!  He was never a person to throw up with this disease, maybe once every 2-3 weeks.

Thanks!

I was fine on it for a while, then it started bugging me, too.  I was throwing up within an hour of taking it almost every time.

[RightSide]

I just had a psychiatric evaluation as part of my kidney transplant evaluation.  I happened to tell the psychiatrist about some of these difficulties I've had in balancing meds, how PTH and other blood values keep fluctuating as the neph adjusts the doses up and down, etc.

He told me to just think of it as "surfing through life."  That is, ride the Wave of Life, keep your balance on your surfboard, and see how long you can keep your balance before you fall off and....

[skyedogrocks]

I just had a psychiatric evaluation as part of my kidney transplant evaluation.  I happened to tell the psychiatrist about some of these difficulties I've had in balancing meds, how PTH and other blood values keep fluctuating as the neph adjusts the doses up and down, etc.

He told me to just think of it as "surfing through life."  That is, ride the Wave of Life, keep your balance on your surfboard, and see how long you can keep your balance before you fall off and....

Oh is that all it takes?  Silly you for not realizing it, eh?   

[BigSteve]

That inane Dr's metaphor belongs in topic "Ignorant things people have said to you". I'm riding my
surfboard, but now a great white shark  is circling around my board.

[greco02]

If you are new at surfing and your balance sucks what are you supposed to do?  Take your chances?  What a dumb thing for a mental health professional to say. 

[Inara]

Wow, the method your doctor is using is completely careless and stupid.  I would definitely try talking to the doc first and express your concerns.  If that doesn't work, find out who is authorized to talk to him on your behalf.  At my clinic, the nurses went by a protocol, but we were allowed a fair amount of freedom to make changes based on a patients history.  Now, the dietitian makes all the Zemplar/Hectoral changes.  They are far more likely to be sympathetic and see reason. 

[Phraxis]

what is ESRD?
And what is  PTH?

Please overlook the simplicity of the questions, but I am real good at predicting currencies ( translation, I suck at nouns)

thanks

Guy 

[BigSteve]

ESRD-End Stage Renal Disease, what most of us have, but I like CKD-Chronic Kidney Disease as a term
better.
PTH-Parathyroid-high parathyroid affects many of us. It this is not controlled by medication or an
operation, calcium is leached from your bones and this causes breaks.

[RichardMEL]

Interestingly with my latest labs my PTH is right down to 9.8 (it was 24) (these are oz numbers, not US ones) so it's quite a drop. I've just emailed the neph about it. My other labs seem quite good (all in range).

[BRANDY]

richardmel--what is considered high mine is 100, my doc said not worried till it was in the 300s does that sound right     just checking on my doc   i guess.

[BRANDY]

rc   I guess if I had read  the start of this thread  I would have had my answer.    Over look me please

[Zach]

Here is some information from the National Kidney Foundation (U.S.A.):

GUIDELINE 8B. VITAMIN D THERAPY IN PATIENTS ON DIALYSIS (CKD STAGE 5)
http://www.kidney.org/professionals/kdoqi/guidelines_bone/Guide8B.htm

8B.1 Patients treated with hemodialysis or peritoneal dialysis with serum levels of intact PTH levels >300 pg/mL (33.0 pmol/L) should receive an active vitamin D sterol (such as calcitriol, alfacalcidol, paricalcitol, or doxercalciferol; see Table 28) to reduce the serum levels of PTH to a target range of 150 to 300 pg/mL (16.5 to 33.0 pmol/L). (EVIDENCE)
~~~~~~~~~~~~~~~~~~~~~~

But remember, a very low PTH can cause Adynamic Bone Disease, so doctors do need to reduce medications when appropriate.

Again, the NKF KDOQI Clinical Practice Guidelines for Bone Metabolism and Disease in Chronic Kidney Disease:

GUIDELINE 13C. ADYNAMIC BONE DISEASE
http://www.kidney.org/professionals/kdoqi/guidelines_bone/Guide13C.htm

13C.1 Adynamic bone disease in stage 5 CKD (as determined either by bone biopsy or intact PTH <100 pg/ml [11.0 pmol/L]) should be treated by allowing plasma levels of intact PTH to rise in order to increase bone turnover. (OPINION)

13C.1a This can be accomplished by decreasing doses of calcium-based phosphate binders and vitamin D or eliminating such therapy. (OPINION)
~~~~~~~~~~~~~~~~~~~~~~~

It is definitely a balancing act.