Monday, July 18, 2016

Prolia vs Teeth - Damned if I do, damned if I don't

I have never broken a bone. My spine, however, is bolted together in one place.  Many of my teeth have been filled or pulled or altered.  I came to TX with a broken tooth - since repaired. Then, after I'd been here for awhile, I woke up one morning with a sliver missing all along the side of a front tooth.  The dentist fixed that.

My new doctor sent me for a DXT  (no injection) bone scan.  My spine could not be scanned because of the bolts. Results: Osteoporosis in my right hip.  Not the worst, but definitely osteoporosis.

Six months ago, I reluctantly started Prolia to treat that osteoporosis and some osteopenia (almost osteoporosis) in the other hip. (My oncologist doesn't like the pills, and I can't swallow them for medical reasons.  Besides, don't like the way they act inside us.)

 I liked some of what I read on demosubab (Prolia.)  Like the fact it doesn't hang around in your system - is nearly gone at the end of the six months.

The first six months on Prolia haven't seemed to do me any harm.  But recently, almost  time for a new shot, some gum soreness. It took two dentist visits to discover a broken tooth in my upper jaw. Dentist removed the broken portion.

With my record of dental problems, I can hardly blame Prolia for that break,  And yet.  And yet...

The oncologist was not happy about that broken tooth--said I should check back with the dentist, who already knows that I have doubts about Prolia,

I left a message for the dentist.  He called me at home!  And asked if there was something less strong than Prolia that the onco could give me. No.  Turns out dentist has a patient on Prolia with an infected root canal. He will "carry her along with antibiotics" until the current Prolia cycle is finished.

I called him back for specifics:  If I get an infection in one of my root canals, I will get the same treatment. When that cycle ends, as long six months, he will remove that tooth.  I asked if he is reassured by the fact that none of my root canals has ever been infected. He wasn't enthusiastic. He insisted I get a note into my onco file saying that I have had several root canals.

The Prolia leaflet clearly states

 "Prolia is a medicine that may infect your immune system." 

Today  I may ask for an appointment with the dentist to check on a cold-sensitive tooth I've noticed for awhile, and the gum above my bridge.  I wonder if I'm imagining gum sensitivity there (I've known for years that stress can make my gums hurt.) Yesterday, I drank tea twice (more about that later). Today gum feels better. Will drink more tea.

Tomorrow I have a rush appointment to discus this with the oncologist.  Then, depending what they both tell me, I will decide to take the shot, or not.

If I get it, I suspect this second shot will be my last.  This stress is messing me up.

This seems so minor compared to the oncology waiting room full of very sick cancer patients.  But losing another tooth or part of my jaw (or the other side effects) does NOT feel minor.

Yes, it feels like like Damned if I get it, damned if I don't.

I have very few real statistics on how often denosumab failed on some women's bones.  I found this:

Long-term treatment of osteoporosis: safety and efficacy appraisal of denosumab
Athanasios D Anastasilakis,1 Konstantinos A Toulis,1 Stergios A Polyzos,2 Chrysostomos D Anastasilakis,3 and Polyzois Makras4Author information ► Copyright and License information ►  

Yes, some prolia patients now have more bone density.  Do I?

The most annoying part?  Medicare will almost certainly not pay for my second bone scan for another year.   So:

 We don't even know how well, or if, this stuff works on me.

 I wish  you health.

PS Tune in again later for my new, no-stone-unturned tooth care program.

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