Recently diagnosed with osteoporosis and I am terrified

drterri, I wanted to let you know that I was also one of those people that was diagnosed with severe osteoporosis at -4.6 in my spine. My endocrinologist said that I was her first patient with this severity. That I was a walking time bomb. That I could fracture by any stressful movement on my joints. Needless to say prior to that I had been very active jogging, strength training. I went home feeling very depressed and on top of that had to decide what bone medicine to take. I decided that I was not going to let this define me. The DEXA doesn’t measure the strength of your bones. I continue with my life and take one day at a time. Life is good.

@bswpb this is true it doesn’t measure the calcium in your bones. I just know being on any bone medication it can affect your levels.

@drterri in my county (I live in NJ) the state sponsors a free Healthly bone class. My town also offers free class for seniors for healthy bones. check with your local health dept
I just had RECLAST infusion and im on day 3, praying for side effects to go away

I had 2 different doctors look at my DEXA scan from 3 months ago. The 1st - insisted I needed an updated DEXA (& she was right). Once DEXA scores were available, #1 doctor said I was in big trouble at base of spine. Today, I saw a 2nd physician (UC Davis system) ---she looked at the same DEXA results & said that base of spine shows only 1.5 of a problem...which apparently isn't such a big deal. The problem is in my left wrist: 3.2-- which #1 doc never mentioned. OMGawd! Thankfully, I'd already decided I wasn't going to continue with the 1st doc --the DEXA prescribing one--because she kept wanting me to take pills for this & that. As of today I now know she's mostly incompetent.

@kristie2 I guess don’t understand your point. Yes, it can affect serum levels and why they recommend taking a supplement. It’s why they check levels before getting Prolia. It also seems to be a bigger issue if kidney disease is involved.

@kristie2 that must have been absolutely terrifying. I'm so glad to hear you're doing well. Your message is very encouraging to me.

You asked me to share my DEXA scores. The oldest one I can find dates back to 2006 at age 59. My femoral score was -2.1, my total hip scores were -1.6. In 2012 at age 65, my femoral neck score was -2.6 and my spine was -2.1. Can’t find my hip scores on that date. In 2024, 18 years from my first DEXA scan, my scores were left femoral neck, -2.9, right femoral neck -3.2, hip scores in both is -3.3, and spine -2.3. The average rate of bone deterioration is approximately -.1 per year. So according to that, my spine is holding up pretty well, my femoral neck is not doing too poorly, but my hips are not great; however, better than average. That being said, I don’t put a lot of faith in DEXA scores. Obviously the machines have changed a lot over the years; to get an accurate score, you not only need to return to the same facility, you should have your screening done on the same machine with the same technician! That’s not likely to happen ever! Have you taken the FRAX test? After you enter your information, it will score you on how likely you are to have a fracture in the next 10 years.

Now let me share two personal stories with you that happened in the last couple of weeks. Yesterday, my neighbor fell while walking her dog. Slipped on black ice, age 74. She does not have osteoporosis, but she broke her wrist and will require surgery. Another neighbor fell while playing pickle ball; he is in his 60s, strong bones, and broke his wrist in two places. My belief is, whether you have osteoporosis or not, our chances of breaking a bone if we fall hard enough, is somewhat likely. Now another story about a neighbor who took her first Reclast infusion. I saw her walking her dog a few days ago and asked her if she had a nice Thanksgiving, she replied, “no I was in the hospital. I took my first Reclast infusion. Had 105 temperature, vomiting and diarrhea and ended up in the ER. I thought it was dying!” She said she was sick for seven days!
Another younger neighbor, who was on oral bone meds, developed kidney stones. That being said, I also have a lot of friends, ages 60 to 80, who are taking various forms of bone drugs without complications. I’m just not willing to take the chance because I do not believe the overall benefits outweigh the risks and I’m not willing to be on drugs for the rest of my life, even though I am a labeled as elderly!
I do have the distinction of being the oldest Pickleball players in my neighborhood and also one of the best!💪

Sorry, this is much longer than I had planned, but I would like to share my experience with doctors. After my assigned GP, who i had never met, called me and wanted me to run to the pharmacy and pick up some bone meds after my latest DEXA test in 2024 (absolutely no conversation about the fact that I have discomfort with acid reflux, so should not be a candidate for oral meds and no discussion about any other side effects) — let’s just get you started on oral medication right away! So I asked to see a specialist. I did a 24 hour urine test and had a follow up appointment with endocrinologist. At the end of our visit, when I told her I had decided, after studying clinical trials, watching dozens of videos, reading several books, and listening to shared experiences from friends and also support groups such as this, I’d made the decision not to take bone meds. She said, “then why are you here? You’re wasting my time and yours “ Unbelievable, right? “I told her, I wanted to get the results of my urine test, which she didn’t share with me and was so upset, she marched me right out of her office, put her arm around me and said, “good luck! I’m sorry I couldn’t talk you into taking medication.” If it hadn’t happened to me, I’m not sure I would believe that this could really happen. So maybe you can understand why I’m a little bit cynical towards doctors, drugs, pharmaceutical companies and don’t get me started on clinical studies! If you have time, just read up on the difference between relative and absolute findings and the way clinical studies can be skewed.

Gotta get the trash out, have breakfast, walk my dog, take care of my neighbors dog and try to get to pickleball in an hour, so must end this. Could go on and on!

There’s an interesting article on the history of Osteoporosis, bone drugs, and the Dexa machines, “How a Bone Disease Grew to Fit a Prescription”. Old article, but worth reading.

@bearbayou beware of pill pushers who won’t listen to your concerns and help you to deal with the side effects of these very strong meds. Mayo Connect is an excellent place to learn from others. Good luck !

@bswpb before getting my 1st injection of Prolia my levels were good it was after that my serum calcium level dropped and I had to increase my Calcium. I just want to pass this knowledge on. If there isn’t enough calcium coming in the body will pull it from the bones.

@nycmusic --- Yes, I'm learning that Mayo Connect is great for learning