When to start vs delay prescription meds for osteoporosis

Posted by bellae2156 @bellae2156, 6 days ago

I would like to hear comments especially from those who may have waited to start prescription meds and see if you're glad you waited. I know everyone's reasons and circumstances likely differ widely. I'm 70 years old. I've had bone density scans every 2 years for at least 5 years and all show numbers for osteopenia. My worst T-score is -2.3 in my left hip. Last scan was March 2025. But each scan shows some worsening in numbers. My PCP has always just sent a letter saying I'm at moderate risk for fractures and to take my calcium and Vitamin D. That's it. But I finally looked at all of the scans over the years again and realized that I need to get proactive.
Back in May, I tried to get an appointment to an endocrinologist, and restricted myself to a female doc that wasn't an hour's drive away, I could only get in to see someone Dec. 1, so I made the appointment. But then I found a PA in an orthopedic surgeon's office who was a certified bone densitometrist and I could get in in July, so I also booked an appointment with her and saw her mid-July. She asked if I'd ever had a fracture and I said I thought I'd broken a rib when I fell power walking about 4 years ago, but I never saw a doctor about it. She said that fracture would put me in the osteoporosis stage even though my numbers don't show it. She also said that resistance training and other exercises for bone strengthening only improve bone density about 2% and while she said it's good to do the exercises, she said that medication was what I needed. She gave me 3 possible meds to consider, Fosamax, Reclast or Tymlos. My issue is that I am a full time sole caregiver for my husband who has terminal cancer and needs help. I take him to numerous medical appointments at MD Anderson. I help him with bathing, meals, meds, dressing, etc. I'm afraid of the side effects of the meds, and even though I know not everyone gets them, I am concerned that if I was unlucky to get side effects, then I may not be able to help my husband sufficiently, especially if I were to suffer any prolonged time with painful side effects. I don't know if I want to take that chance and not be able to take care of him. He has declined enough that I really wonder if he'll have another year left. He's lost 50 pounds in the past year. He's dependent on a walker and the chemo has caused heart failure. So I'm leaning toward not doing any meds and asking the endocrinologist that I will see Dec. 1 to get me a PT order to do resistance training and weight lifting at least twice a week to make sure I'm using proper form and staying safe. I don't know how long Medicare would cover something like that, but it would be less expensive than going with a personal trainer and who may not be experienced working with people with osteoporosis. I'd recently had PT on me knee for a bone spur and after going twice/week for 4 weeks, my cost was only $29.29. In the meantime, I try to go to the gym twice/week and do the machines for resistance training and use the treadmill.

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Profile picture for aliv @aliv

I wish you well. I know what it is to feel the responsibility. I am 75. My doctor suggested either Prolia, Reclast or Fosomax. They all sound like they have some bad side effects. I care for my husband with cancer as well. His is thankfully in remission, but he needs quite a bit of help. One of my prayers is that I keep going as long as he needs me.

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@aliv Thank you for your reply. I also wish you well for you and your husband. My PA said she didn't recommend Prolia to me because of my prior history of blood clots in my legs. At least, I think it was Prolia that she referenced. I was a bit in shock at that appointment when she told me my rib fracture boosted me to osteoporosis despite my T-scores under -2.5. That and that exercise, at it's best, only helps by 2%; that was a bubble buster. I hope I can prove her wrong.

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Profile picture for nycmusic @nycmusic

My OP #s not too bad…recently recovering from cancer, so my Primary urged me to first get my overall health back in balance-meanwhile doing the PT and a very good supplement….due to changing back problems, I got an appointment with an orthopedist (non-surgical) at the Ochs Spine Center ( NYPresbyterian) to deal with back pain and Osteoporosis on a more informed multi-modality level. The spine center has every possible type of docs and therapies…i did have to emphasize non-surgical to get a better choice of doc. I tend to do medicine step by step-not rushing to take strong meds or surgery at the beginning…dealing with things earlier does give one a better shot/ more choices at managing health..wishing you and others success with whatever you chose to do.

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@nycmusic Thank you for your reply. I hope to have a good experience with this new endocrinologist on Dec. 1. I am interested to hear her opinion. I'm sorry to hear you had cancer but good to hear you are recovering. My best to you!

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Profile picture for bellae2156 @bellae2156

@shocknot26 Thanks for your reply. I will have to check out books by Kevin McCormick and have only recently started doing research on all of this. There are so many ads on social media and they can lead you down a rabbit hole. I recently explored OsteoStrong as Houston as 2 locations, but from what I can find out, the claims on building bone back are not backed by studies.

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@bellae2156 I found social media is NOT the way to go (for me, at least) as there is a lot of misinformation and negativity. I really like this forum as there are a lot of caring, knowledgeable people who have been through it. But still—everyone is different and it is scary and overwhelming to say the least. I understand your concern about dong the everyday “normal” things with more care. I only just got up enough courage to begin riding my bike again since my fracture and still need to build my confidence back. I wish you the best!

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I thought 2.5 and above denotes osteoporosis . At 2.3 wouldn’t you be osteopenia? Drs still want to introduce meds? Please advise

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Profile picture for oopsiedaisy @oopsiedaisy

I started treatment at age 57 so not exactly early or late. I knew I had osteopenia for four years prior but chose to address it with exercise, diet and supplements. I was already on HRT and doing resistance training.

My first drug was alendronate (Fosamax) and I tolerated it well. It helped me build bone density for the first two years but my bone density started to drop after year three.

I fractured while still on it at the end of year 5. That fracture was very debilitating and painful. I agree with tillymack that a fracture at this point in your husband's caregiving would be difficult.

I took Tymlos for about four months and had few side effects. Those included some mild joint pain and a bit of constipation. The good thing about Tymlos is that it stimulates the growth of new bone, whereas Reclast and Fosamax help you preserve current bone density and do not directly stimulate new bone growth.

Tymlos is out of your system within hours so if you were not able to tolerate it, you could stop it and be back to normal within a day or two.

It's also now recommended starting with an anabolic (bone building) medication like Tymlos first rather than a bisphosphonate because the latter can impact the effectiveness of an anabolic medication that might be needed later.

Good luck. I am sorry that you are going through what you are right now and wish you and your husband all the best.

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@oopsiedaisy Thank you for your reply. I hope to avoid any fractures; the broken rib was bad enough but I can't imagine what a spinal compression fracture or hip fracture would be like. I'm sure they are debilitating. That scares me. I never did HRT with menopause and don't know if that would be recommended to me or not. But I do need to research it. I thought the information the Bone Coach, Kevin Ellis, talked about on his Zoom webinar, was interesting but his products are too expensive for me. And I didn't put a lot of time into researching his program because of that. It seems like I have a lot of research to do between now and Dec. 1. Thank you for your feedback and I wish you all the best as well.

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Profile picture for ipg @ipg

I thought 2.5 and above denotes osteoporosis . At 2.3 wouldn’t you be osteopenia? Drs still want to introduce meds? Please advise

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@ipg It's my understanding that the numbers you quoted are correct, but the PA that I saw in July said that with me already having a rib fracture 4 years ago pushes me from osteopenia to osteoporosis. I will see if the endocrinologist tells me the same thing when I see her. if you go by just my T-scores, it's osteopenia.

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I started Evista in my 50s by happenstance. I was at a visit to my gynecologist when the NP remarked to the doctor that I should start on a medication for osteoporosis. I remember she said "just look at her" referring to my slight frame. The doctor mentioned having just attended a conference and learned about a new drug called Evista. He mentioned that this has the advantage of reducing the incidence of breast cancer, if I remember correctly. I have been so very greatful to the NP for speaking up when she did all those years ago. I wouldn't change a thing (except declining HRT when another gyn strongly suggested it).

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Profile picture for shocknot26 @shocknot26

@bellae2156 I found social media is NOT the way to go (for me, at least) as there is a lot of misinformation and negativity. I really like this forum as there are a lot of caring, knowledgeable people who have been through it. But still—everyone is different and it is scary and overwhelming to say the least. I understand your concern about dong the everyday “normal” things with more care. I only just got up enough courage to begin riding my bike again since my fracture and still need to build my confidence back. I wish you the best!

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@shocknot26 I agree with you about social media. It's hard to know what is actually factual information. I'm now scrolling past all the bone health stuff.

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Profile picture for bellae2156 @bellae2156

@shocknot26 I agree with you about social media. It's hard to know what is actually factual information. I'm now scrolling past all the bone health stuff.

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@bellae2156 they offer ‘’miracle’’ cures ‘nobody has ever heard of’, etc…(the ones for kidney health are really bad as they discount diet, which i and many others use to get #s normal—in order to promote their cures)…My concerns about the meds are about my own vulnerable areas: GI system after cancer (CRC) , muscle issues, gums/jaw, kidneys—all can be affected negatively by the available meds…taking my time with docs to sort this all out.

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Profile picture for bellae2156 @bellae2156

@tillymack Thanks for your reply. I did tell the PA my concern of being able to continue to care for my husband but she didn't expand on the conversation. I do realize that it will become physically more challenging to manage his care as he further declines. We're exploring hospice and I hope there will be some help with that if he goes that route. But regardless, I will bring this up with the endo when I see her Dec. 1. I'm making a list of questions to ask her about. I caught myself stretching overhead in bed last night and then wondering if I need to be careful with my back doing something like that, so that is going on my list.

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@bellae2156 I had the same thoughts when I learned (at my first appt for scoliosis) that scoliosis is generally expected to worsen by 3% a year. I was told I would risk a spinal fracture if I lifted over 30 lbs. Scoliosis is much worse than osteoporosis, in my opinion, because it causes the spine and attached rib cage to rotate. Even worse is that there are no medications only surgery and a special form of PT called the Schroth method. For adult onset scoliosis, the Schroth method can sometimes stabilize the spinal curve and ribcage rotation but not correct or return to normal. I was very fortunate to find a Schroth practitioner who accepts my insurance. Knowing I'm doing everything I can has quieted those fears.

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