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Newly diagnosed osteoporosis and have cried every day this week
I’m 60 years old and 2 years ago, was diagnosed with osteopenia. My Dr (Gynecologist) put me on Fosamax. I lasted 3 weeks, I had severe pain in my lower right back. At first I thought it was my sciatic nerve, but when I couldn’t roll over in bed, I realized that wasn’t the issue. Dr told me to stop taking the medication, to increase my calcium to 1200 to 1400 mg a day and get some exercise. I started taking a calcium supplement with vitamin D, increased my calcium, but didn’t increase my exercise enough, obviously.
When he called with my results I told him I had already read them and I have been crying all weekend. He asked why I was crying. I said because I feel like my fate has been handed to me, that I’m going to break a bone not heal, and I’m going to die. His response was oh. My mother died at the age of 84 from a broken hip and when I read those results, I had a flashback to her dying alone at night in a nursing home and that would be soon be me. He proceeded to talk to me about two different medications; Evista and Prolia. I had already joined the support group and have been reading many discussions on types of medication‘s. He never once mentioned that Prolia would be a lifelong commitment. He just gave me a brief overview of both of them, and asked me which one I wanted to start taking I told him I wanted to see an endocrinologist. He seem to be kind of offended. I don’t care. I was kind of offended at his lack of empathy and lack of knowledge on those 2 meds. I would love to be able to get my numbers back to at least osteopenia range without medication but I don’t think that’s realistic. The side effects of the meds also scare the heck out of me. I have called two different endocrinologist to make appointments, but waiting for doctor office to send the referrals. I want to have options.
A month ago I started taking a yoga class two times a week and also a Kettlebell class one day a week. I also received a weighted vest at Christmas and just started wearing it this week and use it during my breaks at work. Too bad I didn’t do this two years ago.
I don’t understand my results other than they’re bad. My T score of L1: -2.7, L2: -3.3, L3: -2.9, L4: -2.3, L1-L4: -2.7 I don’t understand the total number and it says look at the lowest score which is -3.3 so I guess I have severe osteoporosis it’s all so confusing. I just can’t get out of my head that life as I know is over. Sorry this was so long, have no one to talk to about this.
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Please take some deep breaths. I volunteer with a woman in her 90’s who broke her hip last year. She took some time to heal and is back with us. A nursing home is not the inevitable.
I personally think the healthcare and drug industries are just instilling fear in us. I realize we all have different underlying issues and meds may be the right way to go for some. However, I think we are all getting put in the same boat unnecessarily.
I am 70 and was first diagnosed with osteopenia over 25 years ago when I had 2 young children. After a few years I started Fosamax for maybe 7 years. I quit the Fosamax when I became more aware of the side effects and felt I was given insufficient follow-up. I did move on to osteoporosis maybe 15 years ago. I took Raloxifene (from an Endocrinologist) for about 7 or 8 years with no obvious effect on my scans. (Several relocations in those years resulted in my having different providers - all wanted meds.) My current GP wants me on Evenity for a year and then move on to something else. But I do not want it. I have severe heart valve issues and have always had bad teeth. For me right now, the effects are scarier. I get my 1200 of calcium from various sources, take K2 w/Mk7, and have started Mg (for non bone issues) and heard here about prunes. I want to consider strontium. I walk and do light exercise and focus on balance. Over this time, I have moved my body and lived my life with no fear or restrictions (although now my heart restricts a little) and have had a few clumsy falls all without experiencing any fractures. (Yes I am grateful.) Are my bones strong even though not dense? I so appreciate all the comments here and the support of everyone. So good to know we are not alone. Thank you for listening.
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8 Reactions@cfic: What is Prolia withdrawal?
@maomac: I posted this on another query but want to offer to you that a good friend with osteoporosis (I have it as well) went to Stanford and saw and endocrinologist there last week. She recommends Reclast over Evenity and perhaps it is because of the heart issue you have mentioned. I am on Prolia now. Each time I go in for my injection my endocrinologist asks, "Have you broken any bones?" Over the past 5 years I have, fortunately, been able to say "no." Last time I was asked I said, "What if my answer was "yes" and I had broken a bone?" The endocrinologist's reply was, "Then we'd have to take you off Prolia and put you on a bone building medicine." I asked which one. She said probably Evenity. Even though I'm not in that situation yet, I did my research, and no way am I taking that. I had a targeted therapy for b/c which mandated I have my heart checked every 3 months for a year so I don't want to take chances on any other medicine compromising my heart. All of our situations are so unique, not just based on our diagnosis, but other health issues we may have.
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3 Reactions@njx58 Congrats on your bone improvement!
What all have you done specifically to improve your bone health? Inspiring to read about good results 💪🏼
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1 Reaction@mkoch
I should have said side effects bit more anxiety, fatigue, definitely body chills and more pain. My spine is a train wreck, no pun intended.
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3 ReactionsRudysmom, I just wanted you to know that my sister has been on Prolia for over 10 years now and has had excellent results with no side effects. I did not do well on Prolia myself however and had to quit after on shot.
I was diagnosed with severe osteoporosis at 51 with my lowest T-score of -4.3. Bisphosphonates did not agree with me so I quit and three years later my lumbar spine t-score was -4.8. I started fracturing and in 2016, started on Forteo which I did for two years. I believe it saved my life. I'm glad you asked to see an endocrinologist and will be able to look at options with them that will best fit for you. Do ask about sequencing of medications, as they are not all the same and an anabolic bone building medication first might be the best bet. Not everyone has the same side effects, so best not to judge by one persons experience .
Just don't wait too long like I did. Fractures are no fun!
I am 67 now and just finishing a booster round of Teriparatide (generic brand of Forteo). I enjoy Tia Chi and gardening and about to join a Line dancing beginners class. You got this. Its a big learning curve but doable!
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8 Reactions@jchue8 Tymlos for two years. Weight training, including exercises that work the back. Nutrition (calcium, vitamin D, vitamin K2.) Collagen peptides. Tymlos was the biggest factor, no question. I'm off Tymlos now, and on Fosamax, so we'll see how it goes when I have another DEXA next January.
I want to emphasize that bone density is not the same as bone quality. You can be osteoporotic and still have strong bones. Remember, the goal isn't to eliminate osteoporosis - it's to avoid fractures. Getting a DEXA with TBS is recommended if possible (I've never had it.)
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9 Reactions@mkoch
rebound effect seems more accurate.
Prolia (denosumab) withdrawal, or discontinuation, causes a rapid loss of bone density and a high risk of "rebound" fractures, particularly multiple vertebral (spine) fractures. When stopped, the protective effect disappears, and bone turnover increases significantly within months. It is crucial to transition to another osteoporosis medication.
Prolia (denosumab) withdrawal is a "rebound phenomenon" occurring when stopping the injection, characterized by a rapid surge in bone-resorbing cells (osteoclasts). This causes accelerated bone density loss and a high risk of multiple vertebral fractures, often within 6–12 months of missing a dose.
It is believed that Prolia stops the osteoclasts but the osteoclasts or preosterclasts don't go away they just "dam" up and then release in a surge when Prolia is stopped.
" Prolia inhibits a protein called RANKL, which is essential for the formation and survival of osteoclasts (cells that break down bone). Recent studies have revealed that during treatment, osteoclasts do not simply disappear; instead, they can split into smaller, dormant pieces called osteomorphs that "hide" in the bone.
The "Surge" Upon Stopping: Once Prolia leaves the body—typically about six to nine months after the last injection—these osteomorphs can rapidly reassemble into active osteoclasts. This leads to a sudden and massive increase in bone resorption (breakdown), often reaching levels higher than before treatment began.
Rapid Bone Loss: Because these cells are no longer inhibited, they can quickly dissolve the bone density gains made during treatment. Many patients lose all their bone density improvements within 12 to 24 months of stopping.
Rebound Fracture Risk: This surge in bone breakdown significantly increases the risk of multiple vertebral fractures (spine fractures), which can occur as early as seven months after the last dose."
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6 Reactions@njx58
If you don’t mind, would you please sharing what exercises you do for your back? Thank you!
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2 ReactionsHi!!! You DO have someone to talk to about this. You are in a very good group of like-minded people that you can share with. I do have osteopenia, and am the youngest in my family. I also have a fear of not being able to take care of myself at the end, maybe having osteoporosis that will limit my movement and my very future in so many ways.
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5 Reactions