Younger than usual with severe osteoporosis

I thought my t score was bad in my spine of -4.6 I went on Evenity for one year and my T score is now -3.3. My endocrinologist then put me on Prolia. I was so against going on it from all that I read but it helps to build more bone density . I have had 2 injections so far and will do another DEXA in August. Will then decide on going on Reclast to hold the gains.

@dgtex
Hello:
Noticed your T scores which are similar to mine.
Have similar concerns on taking meds the rest of my life.
I have avoided so far, taking any, Evenity was
strongly offered to me.
A year ago I had a spinal xray which showed an old fracture -
which I didn't feel.
The past year I watched my diet carefully: dairy/protein
nothing special - (I am still trying to decide about collagen
and possibly creatine)
Exercize if you can - start from where you are -
and build up slowly and safely..
With weights/resistance bands and diet
my T scores improved
5.6% in spine and 6.4% in hips
that was the rheumatologist's reading of the recent
Dexa.
Have you had a TBS. It's difficult for some to get
this, depending on where you live.
Please read all the literature about Prolia before
deciding.

Thank you for your comment and for your support. I live in a major city but still can't find a place to get a TBS, very frustrating indeed. I recently started working a friend who is a personal trainer, he is giving me pointers on how to used the bands and very light weights, it has been helpful. I've also been focusing on my diet more, especially adding more protein.
I'm trying to avoid Prolia as long as I can. I've been looking into Reclast as an option.

hollygs, you had good results with Evenity and then only one year of Tymlos. I'm wondering if the loss following Evenity was mitigated by Tymlos and why you stopped after one year. I'd like to hear about your doctor and/or his thought on the unusual sequence. Did you have testing in between.
I like the sequence, but suspect that the normal loss after Evenity would register lower bone density after a year of Tymlos. I think you have some clues. Thanks

Hi @gently. Could you please clarify what you mean by my "loss after Evenity?" I don't know what you're referring to. Perhaps you meant to tag someone else? Once I understand, I'll address your other questions. Some of the answers are in my update on the thread "Prescribed Tymlos after Evenity."

Hollygs, I'm only referring to the normal loss of Evenity-bone that is generally experienced without medication to mitigate the return of the osteoclasts. I'm thinking that if you take Evenity for a year and then follow with an anabolic for a year, it might appear that the anabolic was responsible for any loss recognizable at that point. It is unusual to stop Tymlos mid treatment unless it is causing side effects, as we are advised that the full course is important to allow for mineralization since it is a longer process for Tymlos (or Forteo) to secure bone.
I'm curious about why you stopped. I am really interested in your response. Thanks.

@gently. Thank you for the clarification. The doctor who prescribed Evenity and then Tymlos is Dr. Joseph Lane. He is Chief of the Metabolic Bone Disease Service at HSS in Manhattan. I changed my insurance in 2024 and he doesn't take it nor accept private pay. At the time, I wasn't aware of the fact that this is an unusual sequence. I went to my endocrinologist in November 2024 to get a prescription for my second year of Tymlos to start in March 2025 and he freaked out and yelled "that's NEVER DONE!" and ran out of the room. He prescribed Prolia which I didn't want. This prompted me to start researching and I arrived here. I saw my rheumatologist in the hopes that he might prescribe Tymlos but he's not really up on osteoporosis meds and his focus is on autoimmune disorders. I still had about three months worth of Tymlos, so I continued using it and proceeded to scramble to find someone in a short period of time and got very lucky. I found my current doctor in November 2024. She agreed to a video visit with me scheduled for the day after I called which was highly unusual! She is a rheumatologist who specializes in osteoporosis. She agreed that I should continue with the Tymlos to complete the first year and ordered a DEXA and TBS which were done in March 2025.
My TBS went from from 1.359 to 1.370. Here are my results from November 2023 and March 2025:

November 2023:
AP Spine(L1-L4) 0.694 -3.2 -1.2 Osteoporosis

Femoral Neck L 0.499 -3.2 -1.5 Osteoporosis

Total Hip L 0.605 -2.8 -1.4 Osteoporosis

Femoral Neck R 0.484 -3.3 -1.6 Osteoporosis

Total Hip R 0.568 -3.1

March 2025
AP Spine(L1-L4) 0.697 -3.2 -1.1 Osteoporosis

Femoral Neck L 0.500 -3.1 -1.4 Osteoporosis

Total Hip L 0.585 -2.9 -1.5 Osteoporosis

Femoral Neck R 0.432 -3.8 -2.0 Osteoporosis

Total Hip R 0.560 -3.1 -1.7 Osteoporosis

After reviewing my TBS and DEXA in March , we discussed my options moving forward. I reported extreme fatigue and joint pain which she thought might be attributed to the Tymlos. She suggested a drug holiday and I agreed. After a month, the fatigue and joint pain were gone. I started Reclast in May 2025. She chose to not proceed with Tymlos for a second year primarily due to my side effects and a concern that it might have the "potential to create abnormal bone" with prolonged use. She has been in touch with Dr. Lane to discuss the latter.
I hope I answered your questions! If you would like more clarification, I'd be happy to provide it.
Warm regards,
Holly

Thank you for sharing! I will be taking Prolia soon, after one year of Evenity treatment last month. My dr said do 2-3 Prolia and then do Evenity again to build more bones. Then maybe Reclast 3-4 years and take a drug holiday if all goes well. I agreed with Prolia despite all the scary story about rebound fractures.

hollygs,
this rheumatologist is a wonderful.
Thanks for this great post.
Looks like Forteo maintained bone density gains for the one danger year after Evenity, except in the right femoral neck.
Did you have the side effects from Tymlos for the entire year.
When the doctor ran from the room did it scare you or make you laugh.
It took care to respond in this way I really appreciate the gesture.

@gently Yes, my rheumatologist is wonderful indeed. She wanted me to start Prolia after Tymlos, but when I said I really didn't want to do that, she said "Okay. Tell me your thoughts." I did, and she agreed with me. I was stunned, honestly.
As far as the side effects from Tymlos, it's hard to know when they started. I still had residual pain from multiple fractures, and being sedentary surely didn't help. I also have autoimmune issues. The biggest problem was the profound fatigue that I experienced and the auto-immune flare-ups.
When my endocrinologist jumped up with and ran out, I was truly alarmed. He ran back in and said "my colleague agrees that that is NEVER DONE!" You and I have actually talked about him way back when I arrived here in a frenzy after that episode. I do laugh about it now.
Thank you for the kind words, always lovely to hear from you. Hope you and yours are well.