Cinacalcet and stuff

[cassandra]

as I had the stomach/oesophagus/duodenum bleeds last year and the than noticed numerous ulcers, I was never told what the cause of the ulcers was. Biopsies done, not helicobacter. But what than? It went fine for about 8 months with Omeprazole. But incredible pain, vomiting, diarea happened again. No blood (either end) so I'm not too worried. After a week of only sipping ginger tea with Kuzu I managed to eat a quarter of a slice of bread. The next day half a sandwich. I think I better start taking my meds tomorrow. Maybe better D too.
The next day after half a sandwich and my meds I'm voilently ill, vomiting etc again. Back in bed I find at last the connection between Cinacalcet/Sensipa (US) and GI bleeds/ulcers.

https://professionals.optumrx.com/content/dam/optum3/professional-optumrx/news/rxnews/drug-safety/drugsafety_sensipar_2017-0518.pdf


And this one that it's not needed to take daily anyway

https://www.omicsonline.org/intermittent-dosing-of-cinacalcet-is-also-effective-in-treating-secondary-hyperparathyroidism-in-hemodialysis-patients-2153-2435.1000229.php?aid=13070


I'll now be having a look in Amgen who produces this stuff.

[cassandra]

Forgot to mention that I discontinued Cinacalcet per yesterday and feel already a bit okay today.
I've informd the ward, so I'm eagerly awaiting their proposal concerning whatever else is poss.
I sent them the links too.


Love, Cas

[cassandra]

And then I Find the best way in which Secondary Hyper ParaThyroid Disease has been explained


 http://www.parathyroid.com/secondary-hyperparathyroidism.htm

[Charlie B53]

For me, so far so good.  I may be fortunate so far that I have not yet noticed any adverse effects from taking this med.  Currently at 90 mg daily it has made a significant reduction in my pth.  I am now within range where I was over 1200.

I will be forwarding these links to my Dr just to make sure he is aware.

I am taking one other med at the 3 X week schedule.  Perhaps this may be an option also.

[cassandra]

Hi Charlie I hope it will keep working for you too. I used it for 10 years without too much probs. I just found it worrying that no-one thought of protecting the GI tract while prescribing C/S.
I read it's now okayed (FDA) for kids too.
And that parathyroidectomy is now possible as a minor operation.


Love, Cas

[Charlie B53]

My pth was OK during the 3 1/2 years on PD.  It changed radically once I switched to Hemo. Previously my Pain Dr noticed my Vit D was nearly non-measurable so Dr had been prescribing the various forms of Vit D in attempt to get it at least on the chart.  That's about when my infection started and forced the change to Hemo.  Between the daily doses of two Vit D's and tripling my Sensipar my pth finally came down.  Dr had already talked about the surgery to remove my parathyroids.  Turns out it isn't necessary, yet.

I'm thinking if a 3 X week dosing may be adequate then why not?  It very well may prevent complications later.

We will talk about this.  While meds can be a necessary evil, why push it if it isn't absolutely necessary?

[cassandra]

Exactly! That's why the Mini Parathyroidectomy is very interesting too. I'll find the link to that one.
Good luck with your discussions Charlie.


Love, Cas

[kickingandscreaming]

Sensipar is a horrible drug-- for me.  I took it for a week and was profoundly depressed and tired.  Stopped the drug and it all went away.  So I really can't use it to regulate MY high Pth.

[heisanberg]

HELLO , CASSANDRA and all others , i also have experiamce extreme GI upset after taking cenacalcet infact i am just taking 30mg daily but its causing nausea, discomfort and tirdness, and finally dicided to find help here, i am form Pakistan and medical conditions are horrible here, by grace of got i am fortunate to have access to cinacalcet here, and a thing i must share i already had two parathyroid surgery.

[Kathymac2]

Exactly! That's why the Mini Parathyroidectomy is very interesting too. I'll find the link to that one.
Good luck with your discussions Charlie.


Love, Cas

I had the Mini Parathyroidectomy surgery done October 2018 at Tampa General Hospital by Drs Boone and Norman.  My diagnosis was primary hyperparathyroidism and I had one adenoma and one abnormal parathyroid gland removed. The other two glands were normal. I highly recommend the Norman Parathyroid Center. Wonderful, caring and skilled doctors and nursing staff.  I live in California and flew to Florida specifically to have this surgery done.  I  couldn't find any doctor in my area with the parathyroid expertise of Dr Norman and his staff. 

You can find additional information at parathyroid.com.

[Simon Dog]

I've been thinking about contacting Medicare, as I think the folks at parathyroid.com may not be following the law.

MDs and hospitals that participate in Medicare are required to accept the Medicare payment rate.    Their "mandatory consult not covered by insurance", which must be done by them and no other facility, as a prereq to being allowed to purchase a Medicare service at the Medicare price is a questionable end run around the Medicare requirement prohibiting balance billing to the patient beyond 20% of the Medicare rate.  The fact that they tell you not to even attempt to get your insurance to pay for this pre-appointment suggests that they may know that this practice is on the edge of the balance billing rules.

It is logistically no different than requiring a Medicare dialysis patient to meet with one of the nurses before each treatment and pay for a consult out of pocket to boost the patient's contribution to the bill above the Medicare mandated 20%.

All my information is obtained from their website.  For all I know, their actual policies may differ.

[iolaire]

I've been thinking about contacting Medicare, as I think the folks at parathyroid.com may not be following the law.

I thought the same thing. I don’t recall if it was discussed before or I just had the same response after finding it on google.

[GA_DAWG]

As part of the transplant work up renewal this December, they did an endoscope and said I had an ulcer for which they prescribed omeprazole. I was reading the list of side effects and there is a warning about kidney damage. I know, but I do still produce urine and would like to continue. It also said omeprazole should not be taken for more than four months. As a result, I have stuck with Tums. I asked the neph about it, but it was obvious he was a bit grouchy that day, as was even commented on by the nutritionist, and said well your kidneys are shot anyway. Again, what function I have, I would kike to keep.

[cassandra]

Hi GA I totally agree. I also reduced my Omeprazole because it does an awful lot more than damage/reduce function in kidneys (which I don't have). I had a bleed, endoscopy showed 7 ulcers, and used it for 3 weeks (40 mg daily) and a few months (20mg daily) while using Kuzu in everything I drink. The check up endoscopy showed no sign of ulcers (6 weeks) so I refused the follow-up endoscopy. But you can get a kidney so, maybe don't inform your apparently 'volatile' neph etc.


Happy New Year All 



 

[cassandra]

I found this site rather helpfull to make sure the reduction in Omeprazole is not going to let our ulcers go rampant and cause more havoc.


  https://www.badgut.org/information-centre/health-nutrition/diet-for-ulcer-disease/

[Charlie B53]

I am quite sure that I am Blessed with a solid stomach.  I rarely ever have a problem.  Once in a very great while I will get sort of an acid burn but generally that is only if I have skipped eating for too long.   A bite of most anything, even just a mouthful of milk or a teaspoon (large) of Herseys Syrup instantly puts out the fire.

Those very rare occasions I have anything like an upset stomach I reach for the zip lock bag of black jelly beans that Daughter saves for me.  Take my time sucking on two of those licorice jelly beans and my stomach is calmed.   Done.   No meds, nothing else.

I can't explain why it works, it just does for me.

[GA_DAWG]

Cassandra, I think I will just wait a month or so, then call the prescribing doc back and tell him the neph asked if there was something else I could take. It is really unusual for my neph to have an attitude like that. First time in six years I have seen him do it. I just kind of write it off to the pressures of changing schedules around the holidays that we all felt and just the general pressure people feel around Christmas. For now, Tums seems to put out any occasional burning I might feel and has the added advantage of contaoining calcium.