Over six months since my backbone disaster I was still exhausted and confused as so much of life slipped away. But the good news was that the latest tests ordered by Dr. B. showed that I was not clearing Prolia too fast and could therefore wait for the usual time for my next shot. (There seems to be no way to get an earlier shot through Medicare or even to find out just what the price is without insurance. Prices around $1200 show up on the internet but that’s a guess.) I've e-mailed Amgen's lawyer to ask about this.
So far no response. (Direct calls to Amgen for this information wound up in a wild goose chase of infinite phone loops.)
Do I need to switch to Reclast (yearly IV?). Or maybe some other drug? This has been suggested. Actually Prolia seemed to be stopping bone loss somewhat (despite the problems it has caused) and had I been warned about delay, and had the U. of C. personnel taken precautions during the change in doctors I might not be in this condition now. Just a few simple words could have avoided all of this! It's water over he dam now but this injury has already destroyed many months of my life, and much may be permanent. It makes me angry whenever I think of it.
Also, what's the downside of Reclast or the other drugs? What role do other drugs or conditions have in all of this? What supplements should I be taking? Many questions. Few answers. I'm now seeing a lot online about this on social media. No way to check out these stories but I think if I'd researched a lot more and trusted doctors a lot less I'd never have started Prolia!
August 27 I spoke with Amgen once again. I asked if they could instruct me on a protocol to get off of Prolia safely. The nurse (they seem to be all nurses who answer these phones but occasionally I reach a pharmacist) with whom I spoke said they have no such protocol, adding that osteoporosis is a chronic condition and I will need to be on this (or some) medication for the rest of my life!
I have spoken at other times with other nurses on the phone at Amgen asking the same question: Does Amgen know how to get off Prolia safely? They have no answer for this beyond "Ask your doctor."
And my doctor, Dr. B., has spoken with Amgen and they appear to have no useful advice for her either in this regard!
I feel like a fish caught in a gill net! How many other poor fish are caught this way in Amgen's Prolia gill net?
My internist asked a specialist colleague about this who confirmed that there is no "protocol" for getting off of Prolia.
Meantime I have spent the spring and summer mostly indoors, getting out for a walk however painful a few times a week. I do my exercises several times daily in bed and in the building pool a few times a week, and I march around the living room for about 20 minutes every most days with 3-5 lb. weights in my hands. I see my physical therapist downtown twice a week to check me out and update my exercise program.
All of this is exhausting. I have but a fraction of my former energy and the constant discomfort/pain is a drain. I drive my car to the top of the Outer Drive and back once a week to keep the battery in shape. That takes about half an hour. I've been at friends' homes a few times but never without discomfort morphing into pain (relieved only when I can lie down for a while to take the excruciating pressure off my back.)
Now at least I'm strong enough to do my own food prep I'm making and drinking at least a quart of raw veggie juice every day as well.
I have almost totally relinquished organizational activities. And I expect to spend the Rosh Hashanah and Yom Kippur holidays pretty much in bed. My social self has a hard time coping with this degree of isolation.
I'd like to get away to someplace warm at the end of winter but don't know if I can take on such an ambitious activity by then.
And all the while, as I am learning more and more, this drug may be doing me harm; yet I cannot find a way to escape it without disaster! Is there any way out of the Prolia gill net?
