Dr sugggesting Prolia (Im 57, postmenopause 12 yrs)

I am so sorry to hear what you have been dealing with. I had read that stopping Prolia for a period of time can make bones worse. Though the Dr told me if I had a reaction or needed to stop, they would pull me off and see if it was the Prolia or something else causing problems. The injections are 1 shot every 6 months, not sure if that is was your care.
It is truly hard to make the right decision when so many individuals with different results, issues.
Wish you the best in healing.

Re: familial dyslipidemia (I have as well), there are genetic tests which can be helpful. For example, I have been on crestor for 2 decades now, my coronary calcium score was also 0. But my brother who is 47, despite statins, had a score of 378 (he had 23 lesions in his LAD, the large vessel that supplied the heart, and my son was diagnosed with high cholesterol at the age of 3 years old. So I had genetic testing which was positive. Likely the many years of natural estrogen was cardio protective. So I elected to take statins and avoid estrogen despite a diagnosis of osteoporosis. I also elected to tell my cousins about genetic testing (all of my aunts and uncles on my dad side have had strokes, heart attacks, and/or heart failure) so they could decide if testing was right for them and / or their children “

If you do decide to take estrogen despite familial dyslipidemia, might try to get bio identical estrogen approval from insurance company. Theoretically has less risk, but to my knowledge, there are no studies

Hi. I hope you can answer a few questions. Of course, feel free not to answer any. Thanks in advance.

1)Just wondering why you were on 4 separate meds?

2)What was your starting tscore and what is it now?

3) is there a point where you will stop the meds or are you planning on taking them forever?

4) are you doing things like the proper exercises, correct diet, doing yoga, stress reduction, etc while you are on meds to try to balance the osteoclast/osteoblast activity

5) how old were you when first diagnosed and did you have underlying issues?

Sorry for so many questions. I am just trying to understand more about this horrible disease.

66 yr. When diagnosed. Why 4 drugs.....attempts to stop bone loss, build bone, maintain gains. I had early onset menopause at 39 and a bit of hormone replacement. But due to the flawed women's health initiative study I was taken off. I am sure that menopause and no hormone replacement was the culprit for me as for most women.
I am not a person who has changed much of my lifestyle choices to chase bone health. I exercise some, I eat well but don't deny myself. My philosophy is quality of life over quantity. I take responsibility for my choices but I dont spend time wringing my hands and chastising my self. Iam not sure if I will always take these meds. One year ago at 76 I began bhrt. My primary goal was not to try and reverse osteoporosis but I have some hope that it will support a wider range of choices. I'll have to see if I can find my beginning t scores and my next deca is this November. I'll try to remember to post those. My greatest gains were with Evenity. If I seem kind of removed from all of this I am. I don't think of Osteoporosis as a terrible disease. For me it is a natural product of hormone loss in the aging female body. I am thrilled everyday that I
am living at a time when there are drugs that help hold it at bay for awhile and that there are hormone replacement opportunities. Hope that helps. It is deeply personal ....these choices.

Thanks for sharing your results, kris1130! With a spine Tscore of -2.6 and femur neck at -1.6 (do you have total hip readings?), it doesn't seem like you're in a situation that requires rushing into medication just yet, unless there are other factors such as existing fractures, a high FRAX score, or cancer related reason (which doesn't sound like the case for you). This could be a good time to do lots of readings and work with your doctors to find out if any underlying causes might be contributing, and take a closer look at all your options. I found this table very useful - it gives a detailed list of secondary causes of osteoporosis, other than estrogen deficiency:
https://pmc.ncbi.nlm.nih.gov/articles/PMC5335887/table/t1-ejr-4-1-46/
My endo ran quite a few tests but didn't find any clear secondary cause. Still, I can see some of the factors on this list fit me, like low bmi and inconsistent calcium intake. I was also irregular with protein intake, which I think may have played a role. Oh, ask your doctor what s/he thinks about your calcium and vitd level.

You can run your numbers through the FRAX calculator using this link:
https://www.fraxplus.org/calculation-tool
If your Dexa includes TBS, then your FRAX score can be further adjusted by built-in calculation.

The first medication choice really matters, since it sets the stage for what comes next - typically, starting with an anabolic is preferred. The challenge then becomes how to maintain those gains over long term, or whether to consider using an anabolic again further down the line. Sequencing of two-drug regimen has been studied more, but evidence is limited for more complex or longer sequences. HRT could be a good option to consider at your age, depending on how the risks and benefits line up for you. There is a good thread where many members discussed the safety of HRT:
https://connect.mayoclinic.org/discussion/hrt-safety/
There are also many youtube videos on HRT use by obgyns.

Everything will come together as you gather this information and feel well prepared discussing your options with your doctor. Wishing you the best. Please keep us updated on how things go!

Luckily I got off Prolia after 6 months- I had the worst reactions while I was on it- aching joints, bleeding gums, hair loss etc. The Doctors never tell you the drawbacks-then I was put on actonel THE WORST- I had sever reflux and esophagus issues had to go to the ER- went off the actonel and still have esophagus issues. I NEVER had these issues in my life. I am so sick of these DRs. telling you wha to take and then we suffer all the side effects. So I exercise vigorously, eat calcium rich foods and try to be careful with potential falls. I have entry level osteoporosis- had endometrial cancer 8 years ago with chemo and I think that is what destroyed my bones.

Please see my comment below.

If u have Medicare they will pay for a home visit. I’m not sure what kind of practioner, I believe a nurse, but not an RN. I would hope one of the things they would check is a falls risk assessment and assessment of your home for environmental causes of falls — area rugs, poor lighting, clutter or debris on floors, uneven or split-level flooring, insecurely attached carpets or rugs, slippery surfaces (especially in bathrooms and kitchens), and poor stair design or maintenance (such as uneven steps or lack of sturdy handrails). Additional risks are obstacles like trailing wires or low furniture, a lack of grab bars in bathrooms, and poor outdoor maintenance, including uneven sidewalks or slippery entrances.

I had osteoporosis and did Forteo with good result. I thought Reclast was the way to go but had severe jaw pain. I never did another. I had also tried all the oral medications and had horrible GERD. I went natural for about 15 years. I ate well, took supplements and exercised. My done density stayed essentially the same. Then two years ago had a surgery that resulted in two more. I was horribly inactive of two years and lost a lot of bone density. My primary care wanted me to try Prolia and am sorry I did but the rheumatologist I saw said he doesn't recommend changing it right now because I can't do bisphosphonates. He said he recommends Prolia as a last resort because it is so tough to get off of.