Connect
← Return to Younger than usual with severe osteoporosis
Discussion
Younger than usual with severe osteoporosis
Osteoporosis & Bone Health | Last Active: Aug 20 1:41am | Replies (84)Comment receiving replies
@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
Replies to "@gently. Thank you for the clarification. The doctor who prescribed Evenity and then Tymlos is Dr...."
@hollygs Am i reading those numbers wrong? It looks like there were hardly any gains between 2023 and 2025?? What were your numbers before 2023??
And BTW, your doctor’s reaction cracked me up!!
Hi Holly, thank you very much for sharing your experiences - this sequence that you had is truly rare and fascinating, and your experience could be very helpful for any of us who may face a similar situation in the future.
I remember your original discussion thread and how difficult that period must have been. It's so reassuring to see that you seem much more at ease these days.
It's great news that your DXA scan has remained mostly stable after a year on Tymlos, except r femur neck - but this area can often be prone to measurement errors, so hopefully that's the case here.
May I ask what, if anything, you were taking during the 6mo between finishing Evenity and starting Tymlos?
Also, your TBS readings really stood out - they are in the normal range, which is great, especially that level of discordance with your Tscores isn't very common. Do you happen to know what your TBS was before starting Evenity? Thank you.
Could you please share which doctor you are seeing now? I am not happy with my current bone specialist. She is only pushing Reclast, but I have MCAS, which leads to severe allergic reactions to most medicines. Reclast can stay for months in the body, so I would like to pursue other options. My doctor is unwilling to even discuss this.
Connect
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.