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Dexa shows osteopenia, again, sigh.

claireinaz
claireinaz Member Posts: 679
edited March 2022 in Bone Health and Bone Loss

Hi all,

Just finished my six month checkup with MO (all was well, but...) Dexa scan shows osteopenia in hip and spine again. I've been on Tamoxifen (1 year) then an AI for 8. I'm back to getting Prolia injection every six months, which seemed to work the last time I did them with no side effects. But I'm heading into windup of taking any AI, looks like next April.

I'm reaching out to others who regained bone after stopping an AI. Wondered what your experience was like, and how long it took before you did reverse bone loss after you were done with whatever AI you were taking.

I don't need advice on what to do or take to protect my bones, since I've been doing it for years already (yoga, weights, walking/hiking, mag, calcium, Vit K2, vit D, I never smoked, rarely drink and then it's 1 or 2 and no more, etc. etc.).

I'm hoping that when I finish exemestane I'll get some bone back and won't have to continue with Prolia, at any rate.

Claire in AZ


Comments

  • windingshores
    windingshores Member Posts: 160

    I would not worry a lot about having osteopenia. I have had osteoporosis for 14 years and did 5 years of Femara with no fractures. I am surprised you are on Prolia, with osteopenia. You can only take it for 5 years total and once you stop your bones go back to baseline, and then you need something else. Some doctors are prescribing really early . Tamoxifen would not affect your bones of course.. In my experience an AI drops your bone density the first year and then the density stabilizes. it seems the Prolia was prescribed for you due to the AI as a preventative, but osteopenia is not that worrisome yet in my view.

  • edwards750
    edwards750 Member Posts: 1,568

    My MO started me on Arimidex which was a big mistake. I already had osteopenia and Arimidex attacks the bones. She did switch me to Tamoxifen but the damage was already done. I had osteoporosis which I gotta tell you was extremely painful. My internist prescribed Boniva which I take once a month. It has helped considerably. My last scan showed my numbers were in the osteopenia range.

  • claireinaz
    claireinaz Member Posts: 679

    Hi Edwards750/Winding shores, thank you. I only got 3 or 4 Prolia shots total. The Dexa scan 3 years ago showed no osteopenia after those 3-4 injections, so no more Prolia because insurance wouldn't cover it--there was no justification for it. I suspect that if next Dexa shows no improvement after a few injections of Prolia, I might look into Boniva after researching, of course.

    Since I'm 62, but super active and do a lot of weightbearing exercise, I might suspect this is somewhat age related but also because I've been on Arimidex, then Aromasin for nearly 9 years and Tamoxifen before that.

    I have either Zometa or Prolia scheduled for Wed.

  • alicebastable
    alicebastable Member Posts: 1,939

    Just as an FYI, Dexa scans can have errors. The first one I had in 2018 showed osteopenia and osteoporosis. I always wondered about that reading because the scan felt rushed and I didn't think I'd gotten my body completely positioned. I had another scan last year and told the technician that I wanted time to get positioned correctly, and explained what had happened at the previous one. This one showed such vast improvement (very mild osteopenia) that my primary doc was freaking out and was ready to submit me to a medical journal until I clued her in. So if your hip or spine is even a little off where it needs to be for the scan, it can cause errors.

  • edj3
    edj3 Member Posts: 1,579

    And I'll chime in and say that the values also don't tell the whole story, at least not always. In my case, those numbers indicate osteopenia, and not very bad at that.

    However--I've fractured my pelvis while running, and then two years later my foot. The pelvic fracture is what got me the osteoporosis dx, not my DEXA scan.

    (and yes, I've lifted weights, eaten correctly my entire life--sometimes you just get a shit hand for your DNA)

  • minustwo
    minustwo Member Posts: 13,076

    Note - the data about Prolia only being good for 5 years is outdated. The numbers are stretching out to 10 years now. More details available this summer.

    Some of this depends on your age. If at age 77 & living alone. I have a hip or spine fracture with osteopenia, I'll be warehoused w/o much hope of living on my own again. So I see an endochrinologist and continue to take my Prolia shots.

  • hapa
    hapa Member Posts: 613

    I'm also surprised you're on prolia for osteopenia. I had full blown osteoporosis at my first DEXA scan and haven't had any treatment. My fracture risk was pretty low. BMD is correlated to weight and your age, and your T score is based on where your BMD lands on the distribution of BMDs of white women aged 20-29. Here's an interesting article I read about osteopenia a while back about how cutoffs were determined:

    How A Bone Disease Grew To Fit The Prescription

    You can calculate your risk of hip fracture or major osteoporatic fracture here:

    https://www.sheffield.ac.uk/FRAX/tool.aspx?country=9

    Even with full blown osteoporosis, my risk of fracture was very low. My BMD was low because I'm thin. There is a blurb on that page that tells you what fracture risk warrants treatment, I was nowhere close.

  • marciam
    marciam Member Posts: 83

    Hello ladies;

    Well, I've got results yesterday on my last dexa scan, i had stage 4 BC, and took steroids for a brain tumor ten years ago. I've been on a variety of bone loss meds and do an excellent diet of kale nearly every day. In 2019 when I got my dexa scans I saw that the osteoporosis had worsened even though i went off the Arimidex. So at that point, I ask my dr. for an RX for Evista. I had a terrible time with tamoxifen which had been prescribed ten years ago for BC, but I really didn't have that much trouble with Evista, which is prescribed for breast cancer as well. I tried it but it too failed. I'm not sure s I do exercise with yoga walks daily. I'm discouraged as it showed worsening symptoms and both parents were compromised by broken hips and had to be in nursing homes in their 70's. I did view a wonderful discussion of Dr. Mark Hyman , MD, functional medicine dr, discussing osteoporosis on youtube. he recommends a proper diet and no milk, instead, kale Vit D less calcium! I am going back to the drawing board will try to exercise more! I'm not taking prolia as I have autoimmune disease of all kinds and it's not safe.

    I wish there was something else I cud do but I'm doing all I can. I'm remaining free of disease with regard to BC, that is a lot to be thankful for. Shrugg ! I wish you all good luck in addressing your osteoporosis!

    Marcia



  • claireinaz
    claireinaz Member Posts: 679

    Hi all,

    Thanks for this conversation. I really do wonder if simply stopping the Exemestane will help, to my original query. I have about 9 more months of it, then I'm done. I'm not really ON Prolia; I had three injections, I think, and then because it reversed my osteopenia completely per a dexa scan, insurance wouldn't cover it anymore. So I haven't had any further injections for three years.

    If anyone has any experience with their bone density improving when they stopped AI, I would really like to hear from them as I need some hope, not negative experiences, although I understand how disappointing it must be to wind up with bone problems on top of *(&( BC. I get it.

    Thank you, Alice, for that voice of reason.

    My grandmother had osteoporosis, broke her hip, had a terrible replacement, and I think that led to her demise, though she lived to be 99. My mother had it as well, with dowager's hump beginning in her 80s. I am much, much more active than they ever were. I eat better than they did. I am trying not to wind up like them, and navigate recurrence risk too, which is something they didn't have to do.

    I have also heard that about less calcium, hapa. I read that since our typical western diet is high in protein, usually animal protein, that protein like that actually leaches calcium from our bones. I eat yogurt, very little cheese--it's like a garnish, but lots of fruits and veggies daily. LOTS of it :), and no animal protein other than fish. I've been eating like that for years, since before my dx but certainly afterward. It's supposed to reduce recurrence risk.

    It's maddening, trying to protect every part of us and avoid recurrence at the same time.

    C

  • SandyRobinson
    SandyRobinson Member Posts: 6

    I am 53 years old and I have been on ovarian suppression and letrozole for 9 months. I am petrified of taking Lupron and let his all for a total of 5 years because of course I don't want osteoporosis. I'm wondering if they're over-medicating me because there is no way to find out when I will be in permanent menopause since I am under the Lupron shot. My mother went into menopause at 59 and I will be 54 on February 1st. I am afraid of osteoporosis as I am the breast cancer. Am I bound to get osteoporosis? Should I stop treatment and wait until I do go in permanent menopause and take the medication. Any help would be great

  • terrioh
    terrioh Member Posts: 4

    My Dr. wants to start me on Boniva for osteoporosis after coming off of exemestaine. Started with tamoxifen after a mastectomy. Are you having any issues with Boniva

  • homemom
    homemom Member Posts: 830

    hapa - thank you for those links, very interesting! Some of these meds ya'll are talking about I've never heard of. I did take Fosamax initially when my scan showed Osteopenia. It didn't do much when I had another scan a year later so I went on Prolia. After 3 or 4 injections, my bones were just about normal again, so I went off it. Two years later, another scan, and I had a drop in my hip and spine. Now I'm back on Prolia. hapa's links make you wonder if this is all necessary, especially when I don't have any bone loss issues in my family. My 88 year old mother has never had and still doesn't have, any bone density issues. There is also almost no cancer in my family either soooo.....