Recently diagnosed with osteoporosis

[NY2GANANA]

I was recently informed that I have severe osteoporosis and it was suggested that I get an injection every 6 months. I have an appointment to see doctor to discuss options and results. I would rather find natural or supplement solutions. I have a restricted diet due to food allergies. Any advice or suggestions? Should I see a specialist or is my primary doctor enough? Thank you.

[Met00]

So many of us are told we have severe osteoporosis when in fact it's only mild, so my first question is, on what basis have they decided it's severe? Have you had a fragility fracture? What are your t-scores (from your DEXA scan) and what other risk factors do you have for fracture?

The injection you mention is likely to be Prolia (denosumab) as I don't know another that's every 6 months. The only problem with putting you straight on that is that if you ever have to stop it, you need to go straight onto a bisphosphonate to reduce the risk of rebound fractures, but if you haven't tried a bisphosphonate first, you have no idea whether you will be able to tolerate it. Prolia isn't intended as a first-line treatment for osteoporosis, yet it seems more and more doctors are prescribing it without first trying other medication.

It's important to eat healthily, so if your diet is restricted it may be worth seeing a dietician/nutritionist to ensure you're getting all the nutrients your bones need. Apart from diet and supplements, exercise is the other thing that's very important for bone health. Are you able to do regular, weight-bearing exercise, preferably high-impact (eg jumping, skipping, hopping, dancing) and resistance exercise with weights and resistance bands? If you don't do anything like that at the moment, is it possible to introduce - start slowly and gently and build up very gradually? Obviously what you can do will depend on your general health and mobility as well as your fracture risk.

[NY2GANANA in reply to Met00]

Thank you for the info. I haven’t met with the dr yet one of the office personnel called and told me the results from the bone scan. My doctor isn’t in so the one looking at the results said they recommend the prolia. I will not agree to them after researching online. I am going to request bloodwork to see what vitamins and minerals I am lacking and go from there. I haven’t fractured any bones, so not sure why I was told severe. Dr probably gets a kick back from big pharma to suggest the prolia.

[Met00 in reply to NY2GANANA]

In the UK we have a right to be given a copy of any test results, scans etc. Are you able to request your DEXA scan results in the US? That would give you a much clearer picture.

[NY2GANANA in reply to Met00]

I plan on asking for one and it shouldn’t be a problem getting it

[FearFracture in reply to NY2GANANA]

Make sure they give you the FULL DEXA report not just the summary. I’m in the US and the facility that did my scans really made it difficult for me to get the full report but I did finally get it.

[FearFracture in reply to NY2GANANA]

Before taking any osteo-meds print this list of tests and make sure your doctor has ruled out other potential causes for your bone loss betterbones.com/osteoporosi... If you start osteo-meds prior to running these tests the meds can skew the results. Additionally, if you have untreated hyperthyroidism, parathyroid gland issues, Celiacs, etc. osteo-meds will not help and may complicate your situation. Lastly, 1 DEXA scan only gives a snapshot of your current bone density, it will not tell you if you are continuously losing bone. There are bone marker turnover tests that can show this.

[NY2GANANA in reply to FearFracture]

Thank you for the info. I would prefer to do other tests to see what’s lacking in my system first before popping any pills or getting injections. Some doctors are too quick to give a pill before checking other things. I’m sure the bone loss is due to me being menopausal for 20 years.

[FearFracture in reply to NY2GANANA]

Even if all other things are ruled out, meaning it turns out that you have no "secondary" causes for your osteoporosis, depending on your DEXA scores, if you've already had fractures, and your physical ability, there are still options for reversing bone loss naturally.

The Calton's caltonnutrition.com/categor... theory is that all osteoporosis is secondary because if osteoporosis were simply a natural part of the aging process that everyone would get it. Mira Calton was diagnosed with osteoporosis in her 30. She and her husband worked together to "tweak" her diet and exercise program and she was able to naturally reverse her osteoporosis.

Also check out the Australian LIFTMOR study

betterbones.com/exercise/hi...

And Cindi's Story

betterbones.com/exercise/bu...

[Lynnel17]

Excellent answer from Met00. Think Prolia’s being overprescribed and that financial interests are at play. Once someone’s on Prolia, the drug company and doctor have a customer for life!

[NatureGirl7]

I I know that I always can get a copy of my DEXA scan in 24 hrs. from the facility that performs the text. That is standard in my part of the USA. I was recently diagnosed with severe Osteoporosis too. My USA doctor recommended Prolia without me previously ever on any drug before. The doctor didn't tell me about needing a rebound drug. I was diagnosed with osteoporosis 12 years ago was able to stay out of the severe category by lifting weights. I stopped the gym at the start of COVID and didn't go back to lifting until my DEXA scan came back last Nov. I started back at the gym the next day. I am proof that lifting weights can be effective. Since my spine is now in the severe category, 3.7, I did decide to take Reclast, a once a yr. infusion. I do not plan to stay on Reclast more than 3 yr. I am scared about the side effects. I am scared just to rely on lifting and jumping and running to improve my bone density. I just started the jumping and running after learning about it on this site.

[FearFracture in reply to NatureGirl7]

If there is one in your city or nearby, you should consider OsteoStrong.me

There is not one w/i a 2 hour drive of where I live, so I’m currently unable to join, but recently I was in a city w/ an OsteoStrong and I took them up one their 1st visit free offer. I think it looks pretty promising. If you do decide to visit Osteostrong, if they suggest using the WBV (whole body vibration) before using their 4 pieces of equipment, I recommend you not. WBV is not good for you it can even lead to detach retinas and it’s not a necessary requirement for using their osteogenic loading equipment.

I reluctantly had my 1st zoledronic acid infusion in November of 2021. I had asked my endocrinologist for natural ways to improve bone density because I really didn’t want to take meds. He said my bones were “horrible” and pushed me toward meds so I followed his advice. Fortunately, I only had mild side effects from the infusion.

After having the infusion, I found this website and learned that there are ways to reverse osteoporosis naturally: Marodyne LiV, OsteoStrong, Australian LIFTMOR Study, etc. My doctor mentioned none of those to me nor did he mention taking vitamin K2.

During my last appt, I asked him about the Marodyne LiV, and he then said that there is research showing that low intensity vibration can improve bone density. I find it extremely annoying that he didn’t mention it to me prior to prescribing drugs.

I’ll be getting another DEXA scan this year. Haven’t decided exactly when. The earliest I would get it is mid-July, which is one year from my last, but I might wait until mid-November so it shows the results after one year from the infusion.

I’m currently not planning on having a 2nd infusion. If my next DEXA doesn’t show a significant improve after having had the infusion, then what’s the point in having a 2nd infusion, and I really want to work on my bones naturally, now that I know it’s an option.

The pandemic began shortly after I was 1st diagnosed and I was unable to join a gym. This past January, I did join and I am going regularly, I try to go every other day.

You might also want to check out betterbones.com/exercise/bu...

[NatureGirl7 in reply to FearFracture]

I truly appreciate the information that you have provided. I found a Osteostrong 1 hr. and 15 minutes from me. I will definately check it out. I just got a script for PT. So after my shin splints heal I will go to PT and then check out Osteostrong. I will look at the other information you listed later today. Thank you Thank you!

[FearFracture in reply to NatureGirl7]

Hope your shin splints heal quickly. Keep us posted on your experience with Osteostrong and let us know if you decide to sign up for their program.

[Joni21]

My experience is that I started out with low dose Evista for Osteopenia guessing back in 2010 but due to overall health and age and Dexa results GP decided I didn’t need to be on it. Prior to leaving the state to move another ‘2016, new GP (other one retired) suggested I get back on some med. due to Osteopenia status. I was given once a week dose of Alendronate and apparently patients should not be on it more than 5 years. Ceased taking per Rheumy Jan. ‘21 however, my last Dexa showed change from Osteopenia -Osteoporosis. Rheumy wanted me to start Prolia. She and I discussed and I advocated after researching for not going on it and just give myself and my body a chance to heal itself and await next Dexa 2 yrs. My concern was I am tapering off Prednisone for PMR. My Osteoporosis status change occurred on Dexa Exam while on Prednisone. Currently at 3.0mg/2.5mg alternating days on prednisone. Did read on PMR Forum about a book I purchased but yet to read…recommended for reading for people with Osteoporosis Dr. Lani’s No-Nonsense Bone Health. It’s never ending on health journeys.

[susie193]

My experience is that I tried one biphosonate tablet and was allergic (skin rash), didn't take any more. Then they tried to get me to take Prolia, I'm not taking it. My last DEXA scan showed an improvement in my severe osteoporosis (I've had several spine fractures), but they didn't tell me my T score and they also said it could be a false positive even though it was the exact same machine and technician. Anyway, I haven't been able to do much exercise other than walking my dogs over the park because I was also unfortunately in a car crash and damaged my sternum. Diet wise for my bones I (try) to eat 5 - 10 prunes (dried plums) every day, apparently it's been shown to improve BMD, also I have organic chicken bone broth every day, I just drink it, it's very good if you have gastro allergy problems. I've increased protein, cut out sugars and carbs as much as possible, I don't drink fizzy soda drinks, apparently they are bad for your bones too. I also use celtic sea salt as it contains 2 types of magnesiums. There's lots of info on youtube. Dr Berry on there is good and has some videos on reversing osteopenia and osteoporosis. Best wishes. 😊

[NY2GANANA in reply to susie193]

Thank you. I will try those suggestions

[HeronNS]

Make sure you are tested for "secondary causes of osteoporosis" before starting any OP drugs. Have a look at my story for some ideas to help you manage things naturally. I recommend this even for people who decide they need the drugs because the only side effect will be generally better health!

osteoporosis.ca/medical-con...

healthunlocked.com/pmrgcauk...

[nnorris46]

Everyone, please be on the lookout for the new test for Osteoporosis that has just been approved by the Food and Drug Administration. So far, it is only available in NJ and NC. I am sure other states will fall in as time goes on. REMS (Radiofrequency Echographic Multi Spectrometry) is an emerging technology for the diagnosis and monitoring of osteoporosis. It not only measures the density, but also the quality, which the DEXA does not. I am driving 8 hours next week to get this test before I agree to taking Prolia (which I probably won't do anyway). The test will be performed in an Orthopedic office so my insurance will cover the visits but not the test (yet). However, it is not expensive to have this done. I will gladly give you an update when I get the results.

[Met00 in reply to nnorris46]

It's available privately (not NHS) in England and worth every penny. It's more fully automated than DEXA so less open to error and therefore more reliable. I wish the UK would follow the US example and recognise its validity!