Younger than usual with severe osteoporosis

Posted by hopefullibrarian @hopefullibrarian, Sep 25, 2023

Looking for others with severe osteoporosis at a "youngish" age, for mutual support. I am 53 with severe osteoporosis---t-scores: lumbar -3.7, and femoral neck -3.2. I had a vertebral compression fracture at age 50, but wasn't given a DEXA scan until 2 years later.

Like so many, I did everything right in my adult life--exercise, healthy diet, supplements. It's at least, in part genetic, and partly because I am very petite and thin. My mother is almost 80, was diagnosed with osteoporosis in her 50s, but even now, without any treatment, her t-scores are not as bad as mine.

In May, I had my first Prolia injection. My insurance denied coverage for Evenity. No other options were given to me. The advice I received was, "Don't worry, take suppliments, keep exercising, and don't fall."

I am hopeful, while being realistic. I'm looking to connect with others who understand.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for hollygs @hollygs

@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

Jump to this post

@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!!

REPLY
Profile picture for hollygs @hollygs

@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

Jump to this post

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.

REPLY
Profile picture for mayblin @mayblin

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.

Jump to this post

Hi @mayblin. You're very welcome. My first post here was "Prescribed Tymlos after Evenity" and you, @gently and @windyshores and others were so kind and so knowledgeable. You all helped me immensely, and I thank you from the bottom of my heart. At the time, I had no idea that the sequence of Tymlos after Evenity was so rare! Honestly, I knew nothing about the osteoporosis medication sequences at that time.

After completing Evenity, I was told to wait two months to do the DEXA and TBS. After that I saw my endocrinologist who put me on Fosamax. I then waited to be approved for Tymlos.

According to my records, I did not have a TBS done prior to starting Evenity.

Best wishes and warm regards!

REPLY
Profile picture for shelldct1 @shelldct1

@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!!

Jump to this post

Hi @shelldct1. Yes, those numbers are correct. Some loss is expected after Evenity, so at least I held onto my gains from that. Originally, I was supposed to be on Tymlos for two years so who knows what the results might have been after that. I think that @mayblin and @gently can speak to these outcomes (loss after Evenity and optimal duration for Tymlos) way more succinctly than I.

My numbers from before Evenity (March 2022) were:
LS - 4.3
LTH - 3.6
L forearm - 2.6

Glad you got a kick out of my endo's reaction!

REPLY
Profile picture for hollygs @hollygs

@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

Jump to this post

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.

REPLY
Profile picture for hollygs @hollygs

Hi @mayblin. You're very welcome. My first post here was "Prescribed Tymlos after Evenity" and you, @gently and @windyshores and others were so kind and so knowledgeable. You all helped me immensely, and I thank you from the bottom of my heart. At the time, I had no idea that the sequence of Tymlos after Evenity was so rare! Honestly, I knew nothing about the osteoporosis medication sequences at that time.

After completing Evenity, I was told to wait two months to do the DEXA and TBS. After that I saw my endocrinologist who put me on Fosamax. I then waited to be approved for Tymlos.

According to my records, I did not have a TBS done prior to starting Evenity.

Best wishes and warm regards!

Jump to this post

Thank you, and thanks so much for your kind words 💕 I’m really glad things worked out well for you. The ideas and experiences shared here are so valuable — I’ve learned a lot from them myself.

Your gains on Evenity were excellent, and you might be the first here to share full results with that sequence! Even though Tymlos didn’t add a lot, it clearly helped preserve what you had built, which matters a lot, since Evenity gains can fade quickly without follow-up treatment. Hopefully we’ll see more research on how best to sequence back-to-back anabolics, since some people really need that option.

It’s great that you’re on Reclast now and in good hands. Please keep us posted on your future therapy plans. I’d be very interested to hear how your doctor approaches the longer-term strategy, with the ultimate goal of fracture prevention.

REPLY
Profile picture for kristie2 @kristie2

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.

Jump to this post

Sorry I forgot to ask if we need to prepare for the Prolia injection, like hydration, rest, Tylenol, etc. before/after the shot to avoid potential side effects.

Thanks!

REPLY
Profile picture for flowers62 @flowers62

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.

Jump to this post

Hi @flowers62. I'm currently seeing a rheumatologist, Dr. Nicole Leung, at NYU in NYC. I also saw Dr. Joseph Lane at HSS in NYC. I highly recommend them. Best wishes to you moving forward.

REPLY
Profile picture for mayblin @mayblin

Thank you, and thanks so much for your kind words 💕 I’m really glad things worked out well for you. The ideas and experiences shared here are so valuable — I’ve learned a lot from them myself.

Your gains on Evenity were excellent, and you might be the first here to share full results with that sequence! Even though Tymlos didn’t add a lot, it clearly helped preserve what you had built, which matters a lot, since Evenity gains can fade quickly without follow-up treatment. Hopefully we’ll see more research on how best to sequence back-to-back anabolics, since some people really need that option.

It’s great that you’re on Reclast now and in good hands. Please keep us posted on your future therapy plans. I’d be very interested to hear how your doctor approaches the longer-term strategy, with the ultimate goal of fracture prevention.

Jump to this post

Thanks again,@mayblin. I agree wholeheartedly, this site is invaluable! Further research into sequencing would definitely be indispensable. Better patient education regarding sequences from the get-go sure wouldn't hurt either!
Warm regards and best wishes to you.

REPLY
Profile picture for yingjichi @yingjichi

Sorry I forgot to ask if we need to prepare for the Prolia injection, like hydration, rest, Tylenol, etc. before/after the shot to avoid potential side effects.

Thanks!

Jump to this post

I never did for my Prolia injection. I do take allergy pills nightly.

REPLY
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