PTH high, calcitriol not working

[Sydnee]

since  the last labs Ed's PTH went from about 300 to over 800.
He is on the highest dose of calcitriol Dr is not sure what to try next. We are at a wait and see. 

not sure what to think.

[Cordelia]

What is the highest dose of calcitriol?

I'm on .5 daily. I take 2 of those little orange football shaped pills.

[bleija]

is phosphorus under control, cant remember which the other.  is he on sensipar... that may be the next step. it is an expensive one.. i had medicare part d with extra help so i only paid 6.50 but im not sure if there is a generic

[jeannea]

No generic yet for Sensipar. I had to pay about $125 for it on my Part D plan.

[bleija]

didnt think so, havnt been off of it for that long lol

[Lillupie]

I never did well on calcitriol. I understand that is what Medicare or the bundling want. But Hectoral (sp) works good, usually that has brought down my pth, then my center will put me on sensipar.

Lisa

[smcd23]

How is his phosphorus? If they are both high, and remain high consistently it might be an option to remove the parathyroid.

[Sydnee]

Phosphorus is normal. The only labs that are not normal are magnesium and calcium are a little low. And of course PTH is high.
Ed is on 2 pills twice a day .5 mg also.
 We are on blue cross blue shield with medicare as a second. Ed's work is changing drug coverage for next year.

[amanda100wilson]

gland removal is a last option usually reserved for tertiary hyperparathyroidism which this isn't  at the moment if this increase is recent.  tertiary is where the gland has enlarged to the point that it kicks out  PTH is an uncontrolled manner and medication does not control.  I am on huge doses of sensipar, but my PTH is still not controlled.  I am due to have my glands removed.  sensipar is probably the next step.

[bleija]

when i switched to hemo, my pth flew to almost 1600. they double m,y sensipar and it came back to normal, they even put me back down on my normal dose after i went back on pd. and now after my transplant i take a regular vit D supplement and nothing else for my parathyroid

[del]

Hubby takes 120mg of sensipar everyday to keep PTH controlled.  It is very expensive though.  Luckily I have good insurance.

[cdwbrooklyn]

I take both sensipar and calcitriol low dose and it helps.  If you look on the sensipar's website, you should be able to find a company that will fund it for you so you only pay $5 for it. 

[lmunchkin]

John was fighting High PTh too.  Over 1800, but they put him on cacitrol and sensipar and now it is 117 Pth last lab.  They have dropped his sensipar to 30 and his cacitrol to 3 times a week.

If you check with your SW where you go, ask about a card where all you have to pay is $5.00.  That is all we pay for Sensipar.

Like above post indicated, removing "body" parts should be the last resort.  Only if all else is exhausted, IMHO!

God Bless,
lmunchkin

[Simon Dog]

You can get the card on-line from www.sensipar.com.   It's only for insured patients to help with copays, and seems to be designed to reduce resistance to the expensive drug while still hammering 3rd parties.

Getting Sensipar from my insurance was quite an experience involving many phone calls by myself, my doc, and the pharmacy.   Nobody said "no", but there were so many approvals required that I feel like I need to bring it home in a briefcase handcuffed to my wrist.

[lmunchkin]

Getting Sensipar from my insurance was quite an experience involving many phone calls by myself, my doc, and the pharmacy.   Nobody said "no", but there were so many approvals required that I feel like I need to bring it home in a briefcase handcuffed to my wrist.

 

[KarenInWA]

I am over 13 months post-tx and I have been dealing with this, too. My reg neph ordered a PTH on me and it was 200. He put me on calcitriol 0.25mcg once a day and it went UP to 249 or 289, I can't remember which (too lazy to go find it right now). I didn't want to go on another expensive med yet, so I suggested I try taking 2000iu of Vitamin D once a day. I take the Vit D3 in the am, and the calcitriol in the pm. I had my PTH done today, about a month later, and it is down to 150! Now just hoping this trend continues...

KarenInWA

[Lexxtech18]

Just curious as to why your Medicare is secondary to BCBS.... I work in a lab where I register all patients that come through and I was told that Medicare is always first. That way Medicare is billed and whatever is left minus copayment goes to secondary billing. Not sure if that would make a difference.

Maybe it's different with Pharmacy?

[CebuShan]

If you already have insurance, Medicare becomes secondary for a certain amount of time. (I can't remember exactly how long it is.) Plus you have to wait so many months before Medicare will even kick in.
 I've been on D since 4/10 and just this month Medicare became primary for me.

[Simon Dog]

The Fresenius nurse I saw this AM told me that Sensipar is being added to the dialysis bundle as of 1/1/2014 and at that point I will get it through their pharmacy as part of the covered treatment plan    I do wonder if the fact that a $$$ drug is bundled will cause the "system" to introduce barriers making it harder for docs to prescribe it.  In my case, it was straight from Vit D IU 50,000 2/weekly to Sensipar.   Perhaps cost issues will cause pressure to make sure Sensipar is used only as a drug of last resort.