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When to start vs delay prescription meds for osteoporosis
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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My thought is that you might be at greater risk of not being able to help your husband if you fracture a bone, and the best way to avoid that is to take a medication. I'm also assuming you might be at greater risk of fracture since your husband may need more physical help from you in the near future, which also puts your bones at risk. Did you discuss these considerations with the PA you saw in July? Best wishes moving forward so that both you and your husband stay safe.
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8 ReactionsSo sorry to hear you are having to make these difficult decisions. My experience was that I too struggled with whether to start or to wait with medicines, although my situation is very different. I am 57 and fractured. My numbers were osteopenia, but I fell hard and fractured L1. Believe me—you do NOT want to fracture! You will not be able to help hubby if you do. For a LONG time. I am happy to hear you are getting two different doc’s opinions. I have found for this disease you really need to do a lot of research and think about what may be your best path forward. There is so much info out there. It is confusing and overwhelming. I found the best two resources are this forum and Keith McCormick’s books. The drugs recommended in your first doc visit are very different. Only one of them is a bone builder; the others are in the class of biphosphonates. From MY research (please do your own) everything I have read is to try the pth (bone builders, like Tymlos) first because if you start with the others first, the pth meds won’t work as well if you try them later. I chose Tymlos and I have been able to tolerate it with minimal side effects. One of the biggest reasons I chose it was bc I learned (on this site) that the dose can be adjusted and decreased. (Even my team of docs didn’t think this possible!). I started with half the dose, had some adverse reactions, so I went even lower. Then I slowly and gradually built up to the whole dose, which is now tolerable. Idk if it is helping my numbers since I am only in month 4, but I decided to do the meds bc I am just too young not to. I felt I had to do something besides my regular active lifestyle and exercise. I also did PT with a BoneFit certified instructor and have been meeting with a nutritionist specialized in bones. These things helped a lot to support me too. Good luck!
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7 ReactionsOne more consideration is that if you do break a bone, and need surgery for it, sometimes you cannot do the surgery until you build up your bones with the meds first (you can see the stories in the threads on this site). That would stop you from assisting your husband for a very long time. And if you do break a bone, then you might not be able to continue to exercise, and it could lead to even worse bone density. To me, exercise (weight lifting and impact exercise) is the MOST important part of fixing our bones.
Also, review your nutrition to see if you are doing things right. Make sure you eat enough protein (probably around 100 grams/day-based on body weight-if you are trying to build muscle and bone). It's hard for most women to reach this number...
Here is info on the proper sequencing of drugs: https://www.youtube.com/watch
Shocknot26 is right, the optimal sequence is Builder drugs (like Tymlos) first, then builder combo with saver drugs (like Evenity), then saver drugs like Fosamax. I am on Tymlos (for almost a year now), and I to find the ability to titrate the dose to be a huge plus. I have only made it to 5 clicks (out of eight), but I'm still getting excellent results (drug combined with about 20 hrs a week of exercise).
It sounds like you are a very wise woman, and will make an informed decision!
Good luck and I hope this helps!
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3 ReactionsI 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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3 ReactionsMy 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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5 ReactionsI 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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4 ReactionsI delayed only a couple months to start the TYMLOS because I had a lot of physical work to get out of the way. But my endocrinologist didn’t tell me I could titrate up starting with a low dose. Knowing that would’ve helped a lot in order not to delay. My DEXA scans for 30 years were really good however it’s not the truth when I had surgery. My cervical C5 fell apart in the surgeons hands. So we just never know. After being on this journey for three years, I would suggest talking to your endocrinologist about a slow start. You can always stop. But if you don’t start and you delay your treatment, you’re gonna be that much older and more exhausted after taking care of your husband. I think you have to consider taking care of yourself in order to take care of him well, in your best health,anyway. I was nauseated and fatigued with the TYMLOS by taking it in the morning so I switched it to the evening and started with a small dose working my way up and it was fine. I’m glad I didn’t delay as I am almost finished with the two-year protocol on the TYMLOS. Good luck life is full of difficult choices. I wish you well.
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1 Reaction@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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1 Reaction@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.
@boneoptimist Thanks for your reply and the link. I am not close to getting 100 gms of protein; I've been averaging 60-70 on my best days but am going to add in some other options to bring that up. I just recently joined this group and do read posts on this forum page and am gradually getting more information through them and your information on Tymlos is helpful to know
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