Struggling with making an osteoporosis treatment decision

i want to make this comment if anyone read my post you know i had 1 prolia shot severe reaction and it ruined my life, fynny i am watching tv and guess what a peolia xommercial comes only this one s different. it now lists alot of the side effects including the fractures that occue when you stop. maybe the big lawsui that the company is involved in is making a difference. the commercial is more realistic to what really occurs

I admire your decision and the thoughtful approach you took. I am also unsure of what to do, aside from some new exercisebone building regimens and dietary changes. If you don't mind my asking, what were your dexa scores. My vertebrae, the lower ones, were a negative 3.2. Other areas of my body had lower Dexa scores.

Hi sedrake51, thank you for sharing your experiences. My doctors recommend Evenity but because of the black box warnings I am wary of it. I am trying exercises and diet changes with the hope that I can improve my lower back vertebrae score from negative 3.2 to less without pharmaceuticals. What was your Dexa score? What are the supplements you take? There are so many recommendations I would like to settle on some and your case sounds very promising.

I have similar scores and experience with my doctor; I am 82 and the black box warnings on Evenity bother me. I am trying the exercise/diet routes first. I look forward to hearing about your experiences and decisions. Thank you for sharing.

By the way, I have seen positive reviews for Evenity primarily for the spine…not so much for the hip which is my primary concern. There are individuals on this site that do not experience any adverse reactions with Evenity. Guess I was an unlucky one.

Here are my Dexa results using the same screening machine.

Spine -1.6. Hip -2.6. 9/18
Spine -1.1. Hip -1.9. 9/20
Spine -1.2. Hip -2.8. Neck -2.2. Forearm -4.3. 09/22

Had one injection of Evenity January, 2023, after I reviewed my Dexa with my physician. My adverse reactions were awful…my body rebelled. I listed them in a previous post.

I walked long distances. I live in the mountains so it was an intense workout. I became quite complacent and barely walked any distance which I truly believe negatively impacted my dexa scores. It has taken me a while to totally recover from the Evenity. Talked with my physician last week. I have now added collagen peptides to my current supplements of calcium, vitamin C, Zinc, Magnesium, D3, B-complex and K-complex. Most of my supplements are from Garden of Life. I would definitely check with your physician so you can make sure that if you are taking any Rx’s…they will be okay with your supplements and also what the dosage should be for each supplement. Your supplements should also be researched as several of them should not be taken at the same time.

I am going to pay for my own Dexa next month to establish a new baseline to see just how much my physical activity really helped my bone health. Hopefully, the scores will improve. I will post a year from now.

This has been one of the most difficult health challenges I have ever faced. I have researched extensively. Others on this site have suggested excellent books and shared their experiences which have been so helpful. I wish you the best in making a positive decision for yourself!

I will check my files and get back with you.

My scores in 2022 were
Region: g/cm2 T-Score
Left Femoral Neck: 0.664 -2.7
Left Total Hip: 0.635 -3.0
1/3 Left Radius: 0.592 -3.2
All three showed an improvement from 2020.
In addition to my meds, the doctor wants me on calcium and vitamin D.

Thank you, greta63. I had not been taking enough vitamins until now, at 82 that's ridiculous! I wonder, what meds are you on, I'm sure you already mentioned that, I'm sorry I do not remember. My spine scores were negative 3.2. I don't remember the others, but they weren't as low as the spine. My last Dexa scan was in 2017 and at that time I was diagnosed with osteopenia. That should have been sufficient warning, but I did not realize it.

One quick comment on my scores--I've been having them done for more than 12 years. About 4 years ago, the scanners in my health system were changed or updated so for a few years I couldn't get a good comparison. Now we finally have 2 different scans to compare.
At present I am on Prolia. I started on actinel way back around 2006 when I was diagnosed with osteoporosis and I did that for almost 3 years. I had side effects like leg and back pain and dry eyes. I stopped actinel and the side effects went away so I just went without any meds. I thought I would be OK. Every Dr. I saw wanted to put me on Forteo but I was concerned about future side effects. Along the way I discovered I had one or two vertebral fractures then another in 2014. That's when I knew I had to be on something--Forteo was strongly advised since I needed to build bone. I worried but what were my options? Maybe side effects or most likely more fractures, pain, and disability. I could only take Forteo for two years. So now I'm on Prolia since coming off Forteo. I guess I'm lucky that I don't notice any side effects with it. I also take calcium and vitamin d which the Dr. monitors to make sure my levels stay in a safe range. I am under the care of an excellent rheumatologist.
I had an unfortunate accident 5 years ago that fractured my femur. I believe it would have been far worse if I had not been on the meds. It reinforced my belief that I needed these meds regardless of what I had thought before. Last winter I passed out for some reason and fell. One of the drs. in the hospital said that being on Prolia may have prevented more broken bones. Who knows? I have other meds that I take for various health issues. I wish I didn't have to take them but at 78 I have come to accept this. I have aches and pains but I'm still relatively healthy. No one said getting old would be easy. 🙂 No complaints.

Hi greta, I am honored and grateful for the time and thought you have given to my situation. Thank you so much.
As I try to meet the standards set for my self imposed efforts to rebuild my bones' weaknesses/defects of osteoporosis, doubts seem to be outpacing successes. Sometimes when I move I do feel the weakness in vertebrae, and at 82 perhaps I need to recognize limits to my own capacities for self improvement.
I will ask my endocrinologist for patience as I question the efficiency of these alternate pharmaceuticals for my condition.