Struggling with making an osteoporosis treatment decision

Hi Windy Shores and thx for responding. I had been on alendronate for some years and it worked well enough until it didn’t. Last dexa was 1.9 neck, 0.8 left hip, 2.6 lumbar spine. No fractures other than a year ago on the top of my foot (went down some stairs in haste and missed the bottom steps, no cast or boot needed but boy did that hurt!) I believe Prolia does build bone, but indirectly, and one would be on it until kingdom come. I won’t hesitate to stop however in consult with my doc if I experience bad side effects. My doc didn’t even consider Forteo or Tymlos for me and he’s worked with all of them.

Your scores aren't bad at all. I mean, your hip is great and your lumbar spine is borderline. That explains the choice. However, once you start Prolia you are in a pickle because once you start, you have to be on meds. If I were you (and I am not) I wouldn't even go on meds. Keith McCormick wrote an excellent book on holistic ways to handle osteoporosis at this level. I have had scores worse then yours for 14 years and if it weren't for cancer meds, I would still not be doing medications. Cancer meds caused fractures due to bone thinning but my scores are in the -4 range! I truly believe people are being medicated too early. Some are still doing Prolia for only 5 years, then they do Tymlos, which is only two years, then maybe back to Prolia or start Reclast for 5- when do you run out of time?!

Hi, Do NOT take Prolia. I have been off for a year+ and still have pain in all my bones when I lie down, my lost hair has not returned and just yesterday I was diagnosed with low red blood cells - another side effect of prolia. Good Luck!

My doc say no no no to Prolia for me. But I have two friends who took it with no problems. At least until they stopped, and then they had to go on Tymlos or Reclast. You can never stop meds once you start Prolia.

@chocoholic Your scores really are not bad which is why Tymlos or Forteo would not be recommended for you. Are your scores actually osteoporosis or are they still osteopenia?
It does seem that doctors are putting patients on meds as a way to prevent progression into osteoporosis. I see you have already been on Fosomax (alendronate) which seems to be the first drug recommended when the patient's osteoporosis isn't too bad. What you choose to go on, or if you go on any drug, is your decision. If you are comfortable with prolia and you are confident in your doctor I can see where it might be a good option for you. I really do not know much about prolia, just what I read here. My only experience is with Tymlos which I am on now.
I hope whatever you decide on will work out well for you.
JK

I have had 7 prolia injections. My bloodwork is very good. Prolia did increase my already high cholesterol but I am now on medication which I should have been on years ago. I have had hair loss but that started when I started beta-blockers before I was on Prolia.
There is a problem when it comes to invasive dental procedures (extractions, implants). The oral surgeon is reluctant to extract a tooth until the end of the six month injection period as healing of bone could be compromised.
Bisphosphonates for me are a no-go.
Follow-up and bone density test in Jan.
The other side effect is chronic (miralax required )constipation.
This was a preexisting issue made worse (although doctor (s) say not the Prolia but its my body and sticking to my story).
Prolia has improved my
bone density although I do question the quality of the bone based on my limited understanding of how the drug interferes with the bone remodelling process.
My opinion: right now, all of the drugs have side effects that are problematic.
On a positive note, so easy to get this painless injection.
Will see what the doc says in Jan 2022.

Hi, Thank you for your comments. I will stick to calcium and Vitamin d (prescription) as Prolia has too many side effects. Did you know that it contains the same chemo therapy drugs used to treat cancer? I am not putting them into my body. It also raised blood pressure. Just too many side effects to live with when I otherwise feel good. Kaye

I said no to osteoporosis medications until the age of 63 ( osteoporosis diagnosed around 55). Then there was just too much bone loss over an 18 month period that it no longer made sense to leave the disease untreated. I am too afraid of fracturing and all the side effects of fractures.

I am scheduled for Zometa infusions for both preventing further bone loss, and reducing the chance of breast cancer to spread to bones. Seems to be a 2 year regimen, with bone density tests and blood work for calcium levels at intervals. Worst bone density in my right hip is actually not bad yet, but with AI meds it will worsen for sure. Again, there comes a point where I have to trust my oncologist, and go with the statistically best outcome. I’m not secure enough to go research all and any kind of alternative or natural or untested treatments/supplements/minerals/ total change of food sources. So be it. Being diagnosed with breast cancer was scary enough, I don’t want to experiment with potentially great, but also potentially useless, remedies to deal with the osteoporosis and the AI side effects over the next 5 years.

@ellerbracke i think you’ve made a very thoughtful and well thought-out decision. Everyone has their own reactions to drugs so you cant listen to horror stories. That’s what I’ve told myself, too. Will you tell us how the infusion goes?