Progress Note -- Updated to January, 2020.
Nearly two years since my Prolia disaster the bones are healed (albeit not like before) and I have gotten some of my life back. But unless I am flat on my back (or lying on my side or floating in water) the pain remains. Standing or sitting for more than an hour without adequate support is painful and after another hour becomes nearly unbearable.
The resulting inactivity left me much weaker than before, although I try hard to stay as active as I can, despite the pain. I exercise regularly under the supervision of a physical therapist.
I remain quite limited in what I can do or even want to do. Do I join family and friends for an evening out? Can I handle the pain this invariably brings? Do I travel (as I did regularly prior to this disaster)? Do I have the strength? Is it worth the pain?
Here's a quick recap of the past few years:
Here I am in the winter of 2018, just weeks before my Prolia disaster. OK, I'll say it: for an 81 year old I thought I was doing pretty well!
That didn't just happen -- it was in part the product of attention to a healthful diet and the right kind of exercise -- as well as decent genes.
I was enjoying two weeks in the Cayman Islands, climbing up and down the pier ladders, (quite a climb at low tide), and, with my fins, mask and snorkel, spending hours observing fascinating marine life, and handling flights and luggage with ease.
I didn't know that just weeks later, this part of my life would be over. There I was "81 going on 60." Now I'm "83 going on 160," much too disabled for this kind of travel and in pain a good deal of the time.
The picture below is how I looked just a few weeks later, not long after three vertebrae fractured because of the brief Prolia delay resulting from what I would call a "medical clerical error."
You can clearly see the spinal curvature and swollen midsection, and the pain and weakness made many activities of daily life painful and/or extremely difficult.
Here is how I looked in September, 2019, after well over a year and a half of pain and disability, and many months of physical therapy as well as exercise at home.
There is still some curvature, but it is less severe. And now I can be upright -- sitting or standing -- for an hour or two without too much pain. However, after about two hours the pain is generally quite severe.
My body shape is still quite different, in part because of the major loss of height in my midsection, and in part the likely result of inactivity and inflammation. So while I am better than a year and a half before, before, I still have a long way to go.
Now in the just before the New Year of 2020, I drive my car once a week (mostly to keep the engine going, from indoor garage to indoor garage or easy nearby parking). I'm seriously thinking of letting go of the car this spring, but that's a hard decision -- having spent well over 60 years behind the wheel. But taxis and Uber may make more sense at this point, although I would very much miss the flexibility of driving.
I still cannot handle air travel. The kind of travel I loved two years ago would be like taking a trip to the Moon today!
Even going downtown to the physical therapist, with whom I'm working so hard, must be in a cab for a distance I used to walk or take the bus.
I've cut my hair quite short -- it was getting matted from so much time lying down -- and wearing "normal" clothes is still impossible. Thank goodness for soft-waisted yoga pants which don't add to the pain of my inflamed mid-section!
I do as much as I can online -- including routine grocery shopping -- as handling bags of groceries is difficult now. I am just grateful that I now can stand long enough without too much pain to prepare my own meals and am no longer confined to delivered food or "TV dinners!"
But, as noted in another post, I need to have a broken tooth extracted which, thanks to Prolia, I may not be able to do without fracturing my back or my jaw. Read more at the post "A Cruel Prolia Related Choice; Must I choose a Toothache or a Backache!"
And all of this because of a corporate and professional failure to warn that even a short DELAY in receiving a Prolia shot could result in painful fractures wiping out years of effort to promote and preserve health.
That is why I write this blog:
1. To warn others that once on Prolia, it may be impossible to get off it safely!
2. To warn that once on Prolia, even a short DELAY (a word I could not find in the Prolia labeling for doctors and not until quite recently -- in 2019 -- in any information for patients) could leave you with the kind of fractures that brought my healthy, active life to a screeching halt!
3. To urge anyone considering Prolia to carefully research this drug before making a decision.
It's too late for me, but if you have not started this drug it is not too late for you, so consider your options carefully!
