Looking for feedback: should I consider meds again? Change drs?

[Nsgs]

Hi everyone. First of all, thank you for your patience, since many of you have probably answered questions like this many times. I am almost 60. went through menopause at age 48. Got first bone density around 2013 (Spine -2.5, total hip -2.4 left, -2.8 right, femoral neck -2.8). Sent to an endocrinologist.At first I was on hormone replacement, which he thought was enough. Eventually I stopped HRT and we went to Actonel and then atlevia but had GI symptoms. Had one reclast infusion in June 2019. Last Bone Density was in 10/20. At that time results were:Spine -2.5 (-3.5% change from 2018), Total hip -2.2 (no sig change from 2018), Femoral neck -2.7 (no sig change from 2018), Proximal radius -2.1 (-3.8% change since 2018). Dr suggested I try Prolia. At that time I had some other pressing health issues, so although I at first agreed, I then decided I didn't want to deal with the osteoporosis at that time, and I cancelled my appt for the Prolia. Although this endocrinologist has a reputation for being very smart and up-to-date on research, he clearly values the medication route. I am now reconsidering this and would rather avoid Prolia given all the negative anecdotes I have heard. BTW, my mom is 88 and never broken a bone despite having osteoporosis and my grandmother lived to 98 without any bone breakage. We are small boned, although not underweight.

I live a relatively healthy life. Do ballet and yoga (at beginner levels, but consistently); go on the treadmill several times a week; walk the dog; and started adding some weight training. I take Nordic Naturals Ultimate Omega D3 (1280 Omega3 plus 25 mcg D3), 500 mg magnesium (for a different condition), and eat a mostly vegetarian diet. My dr did not suggest calcium because he feels that I get enough with nutrition plus he thinks it can have negative cardiovascular risk).

I am confused by all the approaches and info out there. Are my numbers mild or moderate? What happens if I just keep doing what I am doing without medication? Should I change doctors to one who is not so eager to give me medication? I am surprised there are not many specialists in osteoporosis in the medical profession--it is hard to sort through the rheumatologists/endocrinologists out there. I wish there was a clinic with nutritionist, physical therapy (I have gotten mixed info about yoga with osteoporosis), and medical advice.

Thanks again for listening!

[Fruitandnutcase]

Sorry that no one has responded yet. Hopefully someone with more knowledge will come along eventually.

I’m not sure if you will be able to find a doctor (or any other health professional) out there who isn’t very eager to go down the drug route when it comes to treating osteoporosis.

I know I’m not medically qualified but I think you did the right thing by not having Prolia, problems seem to start when you want to stop that. Sounds like you haven’t fractured and you are getting lots of weight bearing exercise.

Has your doctor done blood tests to check for possible secondary causes of osteoporosis?

Could you go back onto HRT to protect your bones or is it too late now?

Take a look at Margaret Martin’s website melioguide.com She is a Canadian physiotherapist with a strong interest in osteoporosis. She has produced books about exercising with osteoporosis and also about doing yoga when you have osteoporosis - that will tell you what not to do as well as what you can do and videos - she also produces various reports on all things concerned with osteoporosis.

Hopefully someone will come along with more suggestions. In the meantime I’d find as many books and articles about osteoporosis as you can and do as much research as you can.

You could also start taking vitamin K2-Mk7 and some magnesium along with your vitamin D3 - that will direct the calcium to your bones - again you will find that sort of information if you do more research.

[Emkap in reply to Fruitandnutcase]

I was also hoping someone else would reply because I am roughly in your situation and have the same questions. I’m 73, hip neck -2.8, vertebrae -1.1.

Fractured my hip a year ago but it wasn’t that bad. I’m alive, came home the day after surgery. Six months later I was back doing yoga, tap dancing, hiking. I believe that the awful mortality figures after hip fractures are due to co-mortality’s, and not the fracture itself.

I’ve decided for now not to take meds, but it’s a really hard decision. My dear deceased mother took fosomax for many years and had really serious problems with her esophagus which made her life miserable. Also had two hip fractures anyway but didn’t die, recovered nicely and came back home afterwards.

[Mark_ABH]

Hi Nsgs, American Bone Health educates people that your bone density test scores, while important, do not tell the whole story about your risk of breaking a bone (which is what treatment should be focused on preventing). There are other factors to consider: family history (which in your case sounds encouraging!), lifestyle, other health conditions you have, medicines you have taken, etc. I recommend you fill out the American Bone Health Fracture Risk Calculator™. It is a scientifically validated tool that can give you an estimate of your risk of breaking a bone in the next 10 years. If your results are moderate or high risk, you will receive information on making a bone health plan to address your risk. The information also can help you and your health care provider decide on treatment moving forward.

It only takes a couple minutes. Try it here: americanbonehealth.org/calc...

[Nsgs]

Thanks all for your support. It is a very confusing situation. Fruitandnutcase I have looked at Melioguide and it is one of the resources that I am consulting. I am thinking of adding the K2 to the D3, but I have read some mixed things about it.

@Emkap it does seem you are in a similar situation . Glad to hear that your fracture did not derail you.

Mark_ABH I have taken the risk assessment in the past. I just did it again and got a higher risk (25% 10 year risk any fracture; 9% average risk any fracture for my age; 5% 10 year risk of hip fracture). I think it is higher because I had radiation this past year for DCIS ("grade 0" breast cancer) and also am not on any HRT for estrogen right now.

I appreciate having this forum to read other peoples experiences and approaches.

I will continue to try and educate myself and make informed decisions.