Binders and PTH and an interesting discovery !

[KICKSTART]

As you know i struggle with binders but luckily the dietician was in yesterday so i managed to grab her. I told her i had tried tums ..no good . We went through the list of binders , tried everyone of them and then she told me ..half the binders i had tried would have been useless anyway !!! BECAUSE i take omeprazole !! Great 7 years of dialysis and thats the first mention ive ever had ..not even my neph said anything ! Anyway plan B is to take a binder again and try an antistemetic? (anti sickness tab) and see if that works. I also mentioned the dreaded but looming Parathyroidectomy and how i didnt want it. DID YOU KNOW that there is a tablet that does the job instead of surgery !!!!! If you didnt know the reason is ..MONEY , its more expensive to give you that , than to put you through surgery !!! Im speechless i honestly am !

[RichardMEL]

Well KS I wouldn't say it's a "tablet instead of surgery" but they're probably talking about Senspiar, which lowers serum PTH. It's worked wonders for me and for 3 or so years now I have been on it and it's kept the knife away from my neck. I'm bemused if the bean counters won't pay for it. It did take some time to get on our system here (before it became official my doc arranged for it under some sort of special dispensation) but it's been available to our renal patents now since I reckon 2007 or 2008.

[KICKSTART]

NO RM  its not sensipar , it does not lower the PTH , it does the actual job of surgery without the surgery. This is why its so rarely used and is so expensive ! Im sorry but we talked about so much i could not even begin to name it but i AM sure of what it does because i was told , there is a big risk because at the same time as it does its job , it strips your body of calcium, so massive doses of calcium have to be pumped into your body. Leave it with me and i will find out what it is called ! 

[RichardMEL]

NO RM  its not sensipar , it does not lower the PTH , it does the actual job of surgery without the surgery. This is why its so rarely used and is so expensive ! Im sorry but we talked about so much i could not even begin to name it but i AM sure of what it does because i was told , there is a big risk because at the same time as it does its job , it strips your body of calcium, so massive doses of calcium have to be pumped into your body. Leave it with me and i will find out what it is called ! 

Sorry to presume incorrectly. Interested to hear more about this.

[KICKSTART]

Yeah i was suprised .. its amazing what they keep quiet ..when it comes to money !

[billybags]

I know when Alan went on to hemo his PTH went sky high and they just upped some thing he took and it came right down. Why did a dietitian know more than the neph it doesn't make sense does it. I think we all ought to take a course in what tablets do what and what tablets not to mix.

[cookie2008]

I take Zemplar for my pth would be interested in the name to, I also take Renagel for my binders they dont bother my stomach thankfully.

[Riki]

I don't take binders for PTH.. my PTH is actually on the normal side, but then, I've had partial parathyroidectomy in 2006.  I"m on the binders because my phosphorus is sky high, and they still don't work that well because of the hungry bone syndrome

[sullidog]

Hey KS did she say why the binders don't work when taking prilasec? I take nexium which is about the same and my binders work fine.
Troy

[Zach]

Hey KS did she say why the binders don't work when taking prilasec? I take nexium which is about the same and my binders work fine.
Troy

A report came out (sorry I don't have it to post) that found when taking proton pump inhibitors, calcium-based binders are less effective in binding with phosphorus.  A more recent report found that it does not negatively impact phosphorus control.

http://www.medscape.com/viewarticle/721016
Sorry the above site requires registration, but it's free.

Interestingly, that same report noted that Renagel's phosphate binding is enhanced by the proton pump inhibitors. But Renvela (sevelamer carbonate) has replaced or will replace Renegel (sevelamer hydrochloride).  So more testing needs to be done.



More on proton pump inhibitors
"By changing the acidity levels in the stomach, proton pump inhibitors can affect the absorption of drugs that depend on the level of acidity."

http://www.foodanddruginteractions.co.uk/which-drugs-food-interact-with-proton-pump-inhibitors.html

[RichardMEL]

"binders" are not taken to lower PTH, binders, as the name suggests, bind with Phosphates and that's the main use. Because so much of our food has phosphorous in it, and we need food, protein etc to survive, the binders are required. Of course this is related to PTH in terms of the Calcium-Phosphorous-Potassium "Triangle" and effect on PTH.

Cinacalet, aka Sensipar, is a reasonably new drug that helps to lower serium Calcium and PTH levels. According to http://en.wikipedia.org/wiki/Cinacalcet it's also marketed as Mimpara in Europe - KS could that be the name they gave you?

[gothiclovemonkey]

Doctors may  be smart, but they are overworked too, i think thats why they can also be clueless sometimes. I really hope anyway, thats why my doctor never knows what im on, he asks every time. Even had some tests done, refered by him, he never remembers i did them. I have to remind him just to find out results. I used to think it was "No news is good news" that is NOT the case....
Ive also heard its not good to be on large amounts of furosemide, and when ive told other people how much im on they look shocked....
I am on sensipar too It would probably work alot better, if i remembered to take the darn thing...

[Riki]

I just started Renagel.. and it's being replaced??  Man, Canada must really be behind the times... or it could just be my "have not" province..

[Jie]

"binders" are not taken to lower PTH, binders, as the name suggests, bind with Phosphates and that's the main use. Because so much of our food has phosphorous in it, and we need food, protein etc to survive, the binders are required. Of course this is related to PTH in terms of the Calcium-Phosphorous-Potassium "Triangle" and effect on PTH.

Cinacalet, aka Sensipar, is a reasonably new drug that helps to lower serium Calcium and PTH levels. According to http://en.wikipedia.org/wiki/Cinacalcet it's also marketed as Mimpara in Europe - KS could that be the name they gave you?

I agree with above.

Sensipar, Zemplar, or Hectorol are drugs used to lower PTH.

[aharris2]

NO RM  its not sensipar , it does not lower the PTH , it does the actual job of surgery without the surgery. This is why its so rarely used and is so expensive ! Im sorry but we talked about so much i could not even begin to name it but i AM sure of what it does because i was told , there is a big risk because at the same time as it does its job , it strips your body of calcium, so massive doses of calcium have to be pumped into your body. Leave it with me and i will find out what it is called ! 

What is it and how does it do the actual job that surgery does?

[RichardMEL]

I just started Renagel.. and it's being replaced??  Man, Canada must really be behind the times... or it could just be my "have not" province..

I've been on Renagel for around 2 and a half years - and I think I was amongst the first in the country to get on it, because it was only approved for use just before then, so I don't know that you're that far behind. Maybe it's just the entire Commonwealth. That Queen has much to answer for !

[-Lady Noir-]

WOW.. i am curious about this!!

Mike was on phosphate binders, when his PTH was sky high. Sugery 'had' to be done otherwise he would have been taken off the transplant waiting list! 

[KICKSTART]

I was deffo told that this treatment/tablet is instead of surgery ..NOT to lower your pth or phos. The reason why no one has heard of it , is because its SO expensive. The reason it is given is when pth surgery is too risky , people with heart conditions etc , that cannot undergo surgery without massive risk are given it . Honestly guys this is NOT some form of binder or pth lowerer. I only see my dietician once in a while , so give me chance and i will find out from her what its called. But dont live in hope of avoiding surgery as this treatment is only given to the chosen few ..well in this country !

[RichardMEL]

Sounds interesting. All I can say is that I was headed towards the dreaded parathyroidectomy until they finally got to put me on Senspiar, and it lowered my PTH massively to the point where surgey is not even in the range of being discussed anymore - so in that sense it's the magical pill that is used instead of surgery - it certainly has worked well for me (and yes, it is very expensive - our govt subsidises it thank God. Just looking at my current packet, the 28 30mg tabs has a cost of $343 on it, and we get it for $33 - so that's around 90% savings. Thank you govt! If I was on a pension or health care consession it would be just $5).

ANyway interested to hear what you find out on this KS - all details help

[KICKSTART]

I know that medication can help return your pth levels to normal/acceptable, but there is a point of no return ! , thats when surgery comes in . Having said that one of the nurses told me they only remove two thirds of the gland and it does grow back !

[aharris2]

Typically, there are 4 glands. Three are totally removed and most of the 4th one too. The small remaining piece is frequently removed from the neck and implanted elsewhere for easy access in the event it should cause future problems.

To all, do not mess with high pth. It destroys your bones remarkably quickly. If lowering your phosphorus with binders works to reduce  your runaway pth, great. If not, meds which directly lower pth such as sensipar is the next step. If that works, again great. If not, do not delay the surgery - your bones are being destroyed by high pth (ripping the calcium out of your bones).

Epoman had two broken hips that would never heal from runaway pth. Epofriend had a broken leg that didn't show any significant signs of healing until after his parathyroidectomy some 6 months later. High pth can be crippling yet I don't see high emphasis being placed on it by the medical community.

KS, any info you can share is appreciated. Ask about the med that KS is telling us about, but if the drs are not forthcoming MOVE FORWARD - get the parathyroidectomy.

I know, I sound like a broken record since I have written about this so many times and in so many threads. I am trying to give it the emphasis it should get.

[KICKSTART]

Im reaching that stage if not already there! I was told though that unless your phos is under control you cannot take meds to lower your pth.

[Riki]

When I was getting ready for my parathyroidectomy, I had done a bit of research on it, and saw how some take the 4th gland and had it implanted in the forearm.  I asked my surgeon about that, and he said that he would never do it, and he woudln't allow anyone around him to do it.  He considers it malpractice. I had 3 and a quarter glands removed, the remaining left alone.

[Zach]

For those who would like to know where the parathyroids are located:

[-Lady Noir-]

Epoman had two broken hips that would never heal from runaway pth. Epofriend had a broken leg that didn't show any significant signs of healing until after his parathyroidectomy some 6 months later. High pth can be crippling yet I don't see high emphasis being placed on it by the medical community.

Really!? Epoman had two broken hips too? So did Mike! 

I totally agree with you aharris, it should be more well known about the dangers of a high PTH..