Osteoporosis DX and Overwhelmed

@sistermac: Tymlos was prescribed treatment because of severe osteoporosis diagnosis. It's a daily injection. I don't know anything about Reclast. Tymlos is taken for no more than 2 years because of danger of cancer. I suppose as the 2-year marker approaches, or further improvement of osteoporosis, doctor might put me on a different medication. While there's been improvement from severe osteoporosis to osteopenia, I'm not delusional and fully aware that osteoporosis isn't totally reversible. I'm 79 yrs. old and likely will have to take some medication for rest of my life--however long I'm blessed to be in this world. Also, I don't know about cost of other osteoporosis meds, but Tymlos is very expensive without insurance ($3K/month). I had to really research insurance plans to find one that would provide some coverage for Tymlos. Is this information helpful?

I am in the same anguish as you. I had dcis had radiation and one more year of anastrozole to go. I want to quite taking it because it destroyed my bones,,, femur and hip. My ctelopeptide is 928 but all else great numbers. The more I read about reclast the more I don’t want to take anything.. so stressed over all of this..

I feel the same as you… so perplexed .. I want to stop the Anastrozole since I only have a year left and hope that I could get back some of my bone density. I am 80 otherwise healthy and I hate to kill my good health with this poison. In today’s world it is so sad women don’t have more healthy options

@sistermac

Why do you call it poison??

You’re in good company…they’re freaking everybody out with no effective “treatment” results,& horrible side effects to boot. I say Take care as best as you can with light weights, walking, good food & all that stuff,& tread lightly on the scary drugs. We’re all in the same boat & not sure what to do! I’ve had osteoporosis since 2024 ( probably sooner since we can only do Dexas every 2 years 😡) & had a very bad time with Fosamax so that was already enough for me for now. Hard to trust anything yet

@dsg2026 thanks for responding… It’s so good to hear someone supportive who has already tried a treatment. Are you still on anything. I am asking my oncologist if i can discontinue the anastrozole after 4 years . If not I am going to try what you said, weights and whatever it takes to not take any of these drugs. It’s horrifying to think in this day and age we still have no positive help for this. I feel like the doctors just want to move on with the latest… thanks again so so appreciate your note.

@gravity3 the possible side effects can hurt to many things that are presently good in your body..

Beachbabe, how low are your Dexa scores? Are you considered mild, moderate or severe osteoporosis?

There is a risk calculator called the FRAX calculator which can give you a risk factor for fracture. Some people have higher risk factors than others.

I don't know if you've ever had any personal experience with caregiving but I took care of my elderly mother. She had multiple fractures starting in her 80s. The worst one was the spinal fracture, which couldn't be fixed surgically due to her age and heart condition. She had to take narcotics for pain until the end of her life. I don't want that for myself. I would rather deal with medication risks than fractures.

Everything in medicine is risk versus benefit. If you don't have severe osteoporosis and you have low risk of fracture per the FRAX, then maybe you can get by with nutritional supplements and exercise. I have a friend who was diagnosed with mild osteoporosis in her hip. She is taking a 1500 mg of calcium and exercising and her Dexa scores have been stable for several years. However, she may not have any other risks. The Dexa scores do not always correlate with actual fracturing.

Beachbabe, I forgot to add that I have severe osteoporosis and a high risk of fracture so I opted for medication. Two years ago, I had only mild to moderate osteoporosis and I was taking calcium and exercising. This didn't work for me. My osteoporosis deteriorated to severe in just 2 years. As I understand it, taking calcium is not going to rebuild bone. It may help maintain what's there, but it will never rebuild the bone.

The other thing I wanted to mention is that osteoporosis isn't just due to aging or menopause. There are various medical problems which cause osteoporosis. For example, celiac disease, parathyroid hormone disorders, etc. You should really see a specialist to test you for these potential underlying causes. Simply taking calcium isn't going to "fix" the underlying cause of the osteoporosis. In my case, I found out I have an abnormal protein in the blood called an M protein which is a precursor of cancer. Please see a specialist!

@followheart87 recent studies indicate calcium and vitamin d supplements provide little meaningful protection against fracture and falls. The falls is odd to me but I guess the thought is stronger bones less chance of falls. But I would think over all strength would prevent falls. This blew me away when I read it! I first heard it from a company called SuppCo. Then I did a little research and sure enough it seems to be true! I found one study out of the UK that says it may help prevent bone loss in post menopausal women. I didn’t want to take it at all but Prolia can lower calcium in the blood. Sooo…