Dem bones dem bones dem, dry bones
Friday May 04th 2012, 8:28 pm
Filed under: Knit,Life

I woke up the other day to my Richard on the phone, talking to the nurse at 7-something o’clock. Where were those hearing aids? *fumble fumble drop* Wait-what? Ask her what the side effects are? What?

He did but didn’t get a real answer, because, as it turned out, she didn’t think there were any.

And so it was that today I got the latest and greatest to fight the bone damage from the useless steroids of my Crohn’s flare three years ago. I had to look it up: Prolia, ie denosumab, is indeed a monoclonal antibody as I thought it must be from the name. (Any drug name that ends in -mab.) And it’s less than two years past FDA approval–I lucked out.

On the last thing they tried, I was one of the unlucky hyper-reactives, sick for a week; six months later I went in for follow-up testing and got a note from the doctor: “I’ve never seen this, I’ve never even heard of this!” It had done diddlysquat. I asked him if it could be a new manifestation of autoimmunity? He said it was too soon to know.

This time, so far, so good, and he will absolutely not wait the standard time frame for follow-up testing.  Crossing my fingers. Having lost 29% bone mass in four years, and having had another year pass since then in which the loss continued at the same speed… (So yes, some of that pre-dated that particular flare.)

The Prolia works by blocking a protein that is a main instigator in shedding bone. Blessings on that doctor for fighting the insurance company while we were off having a good time for a few weeks. May the day come when providers can simply do the right thing because it’s the right thing and not have to go through all that.

Meantime, the bluejays went for the feeder twice in rapid succession while I was home (and got just as rapidly disabused of the idea) and were otherwise nowhere to be seen all day. Things are going back to normal.

And the yarn I grabbed on my way out the door to the clinic is, I’ve decided, not what I want to do next after all. Where are all my 7s…

8 Comments so far
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Crossing my fingers that this does the trick for you!

By the way, I have a bag of Katja-dog fur for you. Will leave it at the shop when I’m next there.

Comment by Kathy in San Jose 05.04.12 @ 9:37 pm

I wonder if taking the natural (not synthetic) vitamin D would help with your bone loss. Since sunshine helps the body manufacture vitamin D and that is essential to strong bones, it might also be contributing to your bone loss. I have always taken calcium and magnesium supplements and still showed signs of osteopenia,but when I started taking vitamin D my dexascans showed bone strengthening. I pray for your problem to be solved.

Comment by Jody 05.05.12 @ 3:12 am

I so hope that this works for you.

Comment by pat Flores 05.05.12 @ 4:36 am

You wrote: “May the day come when providers can simply do the right thing because it’s the right thing and not have to go through all that.” All I can say is AMEN. (My husband, a retired physician, fought too many insurance companies during his career. That’s why we’re now fighting for HR 676.)

Comment by Debbi 05.05.12 @ 4:41 am

No side effects! Did you find those #7s?

Comment by Channon 05.05.12 @ 5:35 am

Oh, you need those nasty symptoms like a third thumb. NO MORE BONE LOSS! You hear me?

Comment by Don Meyer 05.05.12 @ 9:30 am

A third thumb might be a useful side effect. It’s those nasty-sicker-than-the-fur-bearing-dog side effects we don’t like.

Comment by LauraN 05.05.12 @ 4:42 pm

I want someone who is scientifically trained to determine if a treatment is warranted – and I want their vested interest to be in the health of the patient, not the profit to be made or lost. I’m glad you are getting the chance to try this one. Good luck!

Comment by twinsetellen 05.06.12 @ 8:48 am

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