Newly diagnosed with osteoperosis

[Avxt]

I'm here to learn as much as I can and also to alleviate the sheer panic I'm feeling. Glad others are here for support.

[ORdogmom]

so, like you, I am new to the diagnosis. I know the panic. Know it will subside. At least it did for me. That is not at all saying that I am not concerned. Trust me, I am. But that first rush of “OMG, this is going to ruin the rest of my life”, is gone.

First, my experience is to not fully trust your Doctor to know everything. PCPs need to know a little about a lot of things. My first one gave me information that is wrong. My second PCP talked to me for a while, then sent me to a Rheumatologist because he would know more about all the specific treatment modalities, which drugs were right for me, than she does. Even my Rheumatologist was not completely up to par. I had to request Bone Turnover Marker Tests. He told me that though there are those who always order those tests, he does not, but if I really wanted them he would. He only ordered testing for only one turnover marker.

With my first PCP, we settled on Prolia because I was afraid of the bisphosphonates and their effect on my GI system. I then came here to learn that Prolia puts down bone that is more brittle than normal bone, and that when you go off it, you have to immediately switch to a bisphosphonate and do that for at least 2 years. So, if I use it to avoid the bisphosphonates, but I then have to take them anyway, what is the point of the Prolia?

I decided that since my lumbar spine is where the loss of bone mass is the greatest, and since I have seen that I have “settled”, even lost about 1/2-3/4 inch in height, I decided I did not want to just try approaching the issue fully naturally, and needed to give in to the whole bisphosphonate thing. I have now been on them for three weeks, have had no major GI issues, except for a little more burping the day I take them.

Whatever your decision, always keep in mind that the Doctors know only what the drug reps tell them. They are not there reading, and understanding, the research themselves. So, if the company that makes Prolia decides to spend a lot more money wining and dining their potential “pushers”, all of a sudden, more Doctors will be prescribing Prolia.

I am a gardener, walk a minimum of 5 miles a day, according to my Fitbit. But this diagnosis has caused me to rethink how I do things. No more shoveling dirt and compost and mulch like I had been doing. Instead of my garden cart, which needs to have things lifted into it, for the heavy stuff I bought a garden “glider”-a piece of thick plastic with a rope handle that I only have to push the heavy thing onto, then I can pull using the handle.

The diagnosis is not a death sentence. It does not mean that you will never have a normal life again. It just means that you have to be a little more aware. You have to think before you decide to just lift that heavy object since no one is around to help. You have to worry about balance and falls. If you are not in some sort of exercise program, think about starting one. If you have lived a life where you never thought that much about your body, it’s need for exercise, good nutrition, you need to change that. But if you are in decent shape, are not prone to falls, and eat well, you can avoid a lot of the pitfalls.

I know the reluctance to take drugs, but only you know what is right for you.

[Avxt in reply to ORdogmom]

Thank you so much for all the information and I hope things go well for you on the meds. I'm worried about them as well and would like to find a rheumatologist to get a more accurate picture. Thanks again for responding, it helps.

[rnb054 in reply to ORdogmom]

ORdogmom,

So much wonderful information and great advice.

I would love to know more about your “glider”. Where did you get it? Can you post a link?

Many thanks!

[ORdogmom in reply to rnb054]

gardenersedge.com/leonard-g...

[FearFracture in reply to ORdogmom]

You wrote “I then came here to learn that Prolia puts down bone that is more brittle than normal bone. “

Prolia does not “build” bone. Like bisphosphonates, Prolia is an anti-resorptive.

Anabolics “build” new bone.

Here’s some info about the different classes of osteo-meds and how they work.

webmd.com/osteoporosis/feat...

pubmed.ncbi.nlm.nih.gov/363...

[SliderMurphy]

Sorry for your diagnosis. My wife was diagnosed at 51 years young and it threw us both. Do yourself a favor and do a little research. Drugs are not your only options. Two good sources are Kevin Ellis the bone coach and Dr. Doug Lucas Optimal Bone Health.

[Avxt in reply to SliderMurphy]

I'm sorry your wife got this diagnosis so young. Thank you for the words of encouragement and the information. I will check it out.

[FearFracture in reply to SliderMurphy]

I was 50 so I totally get it. What did your wife decide to do? Has her BMD improved?

[SliderMurphy in reply to FearFracture]

FearFracture she was diagnosed in October of 2022 so too soon to get another scan to see what her numbers are doing. She has partnered with the Dr. I noted above Doug Lucas, and decided against the pharma route. She has radically changed her diet(it's medeterainian style) and has added a few new supplements. Her work out routine involves quite a bit more exercises to promote good balance and strength training. She is lifting more weights and practicing more yoga. She looks great and feels great. My two cents is to find a Doctor or coach that KNOWS and UNDERSTANDS what Osteo and Menopause(because that's a part of it too) are about and really do to women. I'm baffled by how few medical professionals spend time learning, understanding and talking to patients about both. Find treatment that you understand, believe in and can get behind.

[FearFracture in reply to SliderMurphy]

My endocrinologist leaves a lot to be desired. I have several helpful links posted in my bio that you may want to check out (BTM pdf, testing for “secondary” causes, etc). Note, I went through premature menopause and because of the clown medical system I never received HRT. I’m actually considering starting it in the near future. I’m currently 54.

[SliderMurphy in reply to FearFracture]

She is on a compound HRT. Dr. Lucus did a battery of tests looking for secondary causes. He is a total health kind of guy. The HRT is money well spent IMO

[FearFracture in reply to SliderMurphy]

If you don’t mind sharing, how long ago did she go through menopause? Mine was decades ago. Until recently, all my doctors, and everything I read, said it was “dangerous” to do HRT if one was 10+ yrs post-menopausal, which I am, or that it just wouldn’t help my bones at this point. Last fall, my new OB/GYN PA said she would prescribe HRT for me, and it seems like in England they are pretty open to prescribing HRT at any age regardless of when one went through menopause.

[SliderMurphy in reply to FearFracture]

Peri started at age 49(3 years ago) or so. Would go 8 to 9 moths and have breakthrough so the count would start again. The transition to official Menopause at 51. I think she has been doing the HRT compound for about 15 to 18 months now...

[HealthyFree]

I am newly diagnosed too. I am less keen to take medications but more interested in evidence based programs that look at effects of exercise to support bone health along with supplements and diet. I too am reacting to the shock of it all.

[Maieva]

I would see a doctor specializing in Endocrinology. I went to the Mayo Clinic and my doctor run lots of tests before she recommended Tymlos. My insurance wouldn’t cover it until I had tried another drug for a year so I took a Reclast once a year infusion. I go back for another scan in August so we’ll see how I have done. The reviews on Tymlos are very promising. My doctor appealed my insurance decision but to no avail and I pay a lot for Regence Blueshield. Very disappointed. I have also started being very careful. My spine score was very bad -5, so no more lifting or doing intense workouts. I’ve just been walking alot daily for now.

[BonesinSeattle in reply to Maieva]

I just saw my doctor last week. He too prescribed Tymlos (I’m -4.2) and I too have Regents but haven’t tried yet to see if it’s covered as I’m still unsure that’s the way I want to go.

[Maieva in reply to BonesinSeattle]

I struggled with this decision as I am so against taking any kind of drugs, but I really trusted my Mayo Clinic doctor, especially since she ran every test imaginable to make sure there was no other reason for my bone loss. I am definitely ready to go on Tymlos after researching how good it works. I was terrified like everyone else, but I was also terrified of ending up in a wheelchair at 65. I know giving yourself a shot everyday sounds daunting, but my doctor was so reassuring about it and I was going to be offered training by her PA on how to do it, I felt comfortable. I’m very disappointed in Regence as I feel like they are jeopardizing my health by waiting.

[JCsMom in reply to Maieva]

I too am doing research after being just diagnosed & don’t want to take a biphosphonate but had read Tymlos is only taken for 1.5 years then I’d have to transition anyway. Plus it has possible detrimental side effects of its own…

[FearFracture in reply to Maieva]

About a week ago, I sent an email to all 3 of my representatives (2 US Senators and my Congressperson) regarding covering the costs of osteoporosis. All, who are US citizens, on this site should be writing to reps to demand osteoporosis meds / treatments be covered by insurance.

[TWEETYCAT]

Your might want to look at my message feeds on here regarding what I am doing for my osteo. This may give you some good information. Good luck!