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alicia26218 alicia26218

I’m 61 and diagnosed with osteoporosis – Devastated!

After two weeks, I was finally able to review my lab results and face reality.  L femur neck -3, L total femur .2.5, spine -3.80.  As some of the people here, I’m trying to decide if not taking Prolia is an option.   

I had radiation and chemotherapy in 2010 due to cancer.  I’m sure that treatment had something to do with my current situation.  I walk almost every day, but stayed away from weights.  I haven’t read all posts, but I’ve found great information on most of the ones I read, thank you!!! Feel free to comment on my post with suggestions or questions.  As mentioned before, I’m overwhelmed and reaching out. 

23 Replies

  • tbulley tbulley alicia26218

    Hi Alicia, my suggestion and something I am working through at the moment is to break a complex and possibly large problem into manageable bits so you can regain control over your health and life. I would project dates and priorities to each

    Here are some of my headings

    What is meant by Osteoporosis – it’s a condition and not a disease and can be caused by many factors, including zero gravity which is why astronauts lose 1-2% bone mass per month

    What does my T-score mean? This is the bone mineral density (BMD) measured by the dxa machine and if its -2.5 or greater you have osteoporosis. -2.5 means 25% less bone density than a person of 30 yrs old. However this is bone density not strength. You might have light but strong bones – I don’t think this is easy to measure. You mentioned Prolia as a solution, it appears to be a good drug for increasing density but it does this by preventing the loss of old bone, which is part of a natural cycle replacing old with new and retaining strength so there are reports of brittle fragile bones but with higher density. However, fracture risk links the T-score to any minimal force fracture you have had. This means that you broke a bone from doing something minimal that would not break a bone of a person. In my experience medical professionals consider all breaks to indicate osteo in older people (I am 60 yrs), as I broke my 5th meta tarsal falling into a pool in a major fall and fell off a low ledge a few months later and broke nothing.

    What causes osteo – plenty of google time here. Vitamin D, Calcium, Magnesium, Vit K2, Phosphorous are crucial in correct amounts and combination for healthy bones. If you lack these you increase osteo risk. There are various issues that cause osteo, mostly in the endocrine systm, too much parathyroid, cortisol etc. Very complex area, suggest your endocrinologist runs the tests and isolates any issues. If these exist, supplementing with Vit D etc might not be as effective.

    Natural or drug treatment. There are plenty of drugs for osteo, some very effective at halting and reducing bone loss, but can have very negative side effects. Once again google various drugs like Prolia, Fosamax and you will see some good and bad experiences. My view is that natural treatment, if it works, is preferable and depending upon your risk profile, you might have time to fix naturally, some of the drug paths seem like dead ends and you can end up with worse bones.

    Exercise is good in many ways if done safely and correctly, but osteo needs weight bearing exercise, so swimming and cycling while good for cardio, muscle tone and balance etc, but does not stimulate bone growth was much as weight bearing exercises like running, jumping or weights. I have read that a load of 4.2 times body is required to stimulate bone growth, jogging is supposed to generate around 3 times body weight. Jumping, sprinting will do more that 4.2 or jogging with a weighted vest. Any exercise need to factor in how much you do, have done in the past, etc. Launching into a heavy running or weights program from nothing can injure muscle, connective tissue as well as weak bones, so ease into any routine carefully – fixing osteo is a multiple year journey. There is a system called biodynamics based upon osteogenics that compresses muscle and bone in 5-10 second static exercises, as well a specific spinal, hip etc exercises that are good for bones simply because the surrounding muscle is being stimulated.

    Diet is also important because much of your calcium, magnesium etc will come from here. Diet does not give much Vit D  though, need supplements and/or sunlight to do this. Once again, plenty of googling on this subject. There are conflicting views on correct level of Vit D, as well as overdosing and some people (like my specialist) who does not put much faith in Vit D underlying my osteo. Google will give you lots of advice on diet from prunes, fermented foods, green leafy veg, grass fed beef, as well as stay away from alcohol, smoking, drugs, junk foods.

    My approach is break into chunks, start with the obvious ones like getting the blood tests to check Vit D, Calcium, testosterone, etc etc. Postpone drug treatment for at least a few months while you regain ownership of your health. Decide on appropriate exercise and get it going. Google educate on major topics, browse these forums, keep a diary of events, blood test results, any health issues and symptoms, exercises, dxa scan dates. Good luck.

    • alicia26218 alicia26218 tbulley

      I appreciate you taking the time to reply and share the information you found in your research.  I like your approach of breaking the problem into bits to make it more manageable.  Each task becomes smaller and somehow more achievable.  My oncologist gave me the diagnosis on my 6 month follow up.  I don’t have blood work that specifies levels of calcium, D, or any other vitamins or minerals. I don’t have a specialist to help me with this and I doubt my oncologist is the right person for it.  I thought I start with my family doctor for the blood work and advice.  I’m also looking for a gym convenient to me so it’s not a big task to attend.  I’m still working full time, but I’m planning to schedule a regular gym routine.  I just need to find the right place.  Your information was very helpful, thank you so much!  

    • tbulley tbulley alicia26218

      You are most welcome, like others here, I think its vital to pool experiences and perspectives, often to offset and test professional medical advice. I am angry and disappointed by the narrow minded approach so often taken by doctors, its easy enough to lose control of your health to real issues, but there is no excuse when poor medical advice makes it worse. Writing down my thoughts for you allows me to better a better grip on how to structure my own situation and how I address it - so I need to thank you for helping me to! Getting a range of correct blood tests might be beyond the average GP, endocrinologists specialise in this as it seems to be all about hormones. If the GP cannot advise, they should refer you. As far as gym/weight work is concerned and I dont know enough about your experience of various exercise types, however any exercise that improves muscle condition is useful. If it is also an impact exercise that stimulates bone recovery, this is a bonus. Improving muscle condition helps with balance, protects the bone, improves your feeling of wellbeing etc, however ease into anything new carefully and slowly. A gym can introduce you to weights etc but its also possible to do much at home in just a few minutes every day. You can exercise your muscles just with resistance between your hands and arms. Flat hands in the prayer position on the chest and tensing for 5-10 seconds is better than nothing at all. There are multiple positions you can use like this when sitting in front of the TV or at work, pushing up on your toes, using arms of chairs to raise and lower body, using things to push against. Doing a mix of these a few times a day is suprisingly hard because mentally we want big gains for important exercises, and gyms classes and costs motivate and drive us. However we keep our teeth healthy by cleaning them twice a day for 5 mins, not by spending 30 minutes three times a week brushing them. The gains from just holding a muscle tension for 5-10 seconds each day which takes a few minutes for half a dozen exercise is significant, especially if you are coming from a low base. If you are able, pushups against a wall, pushing outward inside a door. The hardest part is realising that 5-10 minutes each day makes a significant difference in a couple of weeks if you are coming from a low base. I had a bad go of Hepatitis when I was a teenager, lost 10kg, very weak etc. After a month in hospital, my rehab was to walk around my parents garden once (100m) on the first day, and increase this by one lap each day, so after 10 days I walked a kilometre that a 10 fold increase. Gradual increase in workload and a way to measure were both key to succeeding with this.

    • alicia26218 alicia26218 tbulley

      I agree with you about the doctors and it could be due to their work load.  They see so many people that they don’t have time to give each patient enough attention and time.  I don’t know about everyone else, but I wasn’t give an option.  Sadly enough, it may be in some cases about money.  After reading your post and thinking that my GP most likely will send me to the specialist anyway. I’ve decided go straight to an endocrinologist for a general hormone checkup.  I also found a great Internal Medicine Doctor that may be able to help later.  I never thought of making push-ups against the wall, or do any of the other useful exercises you mentioned.  I can even start on some of those today.  Thank you again for your advice and taking the time to write.  BTW, are you a writer or a teacher?  You write very eloquent and I admire that because writing it’s not one of my strengths. I can do numbers all day, but when it comes to writing I’m worthless, Lol!

    • tbulley tbulley alicia26218

      I should moderate my criticism of the medical profession, as I have been to many excellent natural and orthodox practitioners who have helped me a lot. I am also indebted to all the excellent research that I am reading to make sense of my osteo. I do still stand by my criticism of the tendency to apply protocols to all patients instead of treating individuals with different issues. One size fits all does not work when seen from the patients perspective. I have just qualified as an English teacher after a lifetime working as an IT salesman. All I need now is a job teaching non English speakers to use English. Thank you for complimenting my teaching/writing skills, I enjoy writing and hope one day to write and publish a book - included will be insights into how it is possible for an animal with such a large brain and 7 years of medical training to be so incapable! I generally make use of orthodox medicine to do things like blood tests, and a very gifted iridologist to see how well all my organ systems are doing. Putting both together has kept me away from too much intrusive medicine so far. There is a wealth of research around the issues that I appear to have relating to osteo and hormones, so I am hoping to find some benefit. Keep doing the numbers, the world needs variety.   

    • alicia26218 alicia26218 tbulley

      I believe "one size fits all" approach is highly used in the medical field, regardless of gender, or age.  I've experienced it many time during my cancer treatment.  They failed to tell me what to expect, what to look for, talk to me about prevention, or providing a recommendation to another doctor. They only gave me diagnosis and prescriptions, sadly! So, I'm grateful to have found this forum and learn from people willing to share information and their experience.  I've never heard of an iridologist before and  I looked it up and found out how they work.  It's so interesting how they can read so much from the Iris.  It makes sense to me, maybe that is why doctors always look into your eyes.  Congratulations on your English teacher qualification.  I hope you find a job and start teaching soon, and good luck with your book plans, I'm sure it'll be great.   I don't like writing, but it could be because I'm not good at it.  It takes me a long time for just a small paragraph Lol!

  • Prohow Prohow alicia26218

    I am 71 and also had cancer but my oncologist said my fractures L1-L5 was not from Chemo . They did say that long term use of pregnazone can cause fractures. I take prolia .every case is different but don’t get upset at googling prolia but just take it if doctor says so. I also take 4000 is of vitamin D and 600 iu of calcium. After starting with prolia discontinuation over a period can in fact cause hairline fractures . This I did not know.     I had no radiation show don’t know if that causes osteoporosis. Google radiation to see side effects . Hope this helps

    • alicia26218 alicia26218 Prohow

      Thank you for your reply, I appreciate it.  I’ve been on Anastrozole for 7 years to block my Estrogen.  I’m sure that was another factor for my situation.  According to my doctor I need to take them for 10 years, so I still have three more to go.  Are you tolerating Prolia ok?  My oncologist doctor was searching side effects while talking to me, so I left the office not feeling too confident.  I thought to try and get feedback from people who used it for a long periods of time.  I will definitely take it if the benefit outweighs the side effects. 

  • Anhaga Anhaga alicia26218

    I completely understand your reaction.  This is the way a diagnosis like this strikes most of us, I think.  We feel literally crushed!  In my opinion, and I have no medical training, Prolia should be reserved only for those who have no other option as a last resort.  You may never be able to come off it because of the risk of rebound osteoporosis, and 61 is young to start that journey - you could easily live another 30 or more years.  Bisphosphonates usually are most effective during the first two or three years of use.  After that the risks begin to outweigh the benefits.  Even if you do opt for a bisphosphonate (you may be safe not to medicate, especially if you have no fractures) please do everything you can to improve your bone health naturally.  You can google healthunlocked my osteoporosis journey to read my account of what I did, still do, for my bones.  I don't think there is anything in my regimen which would conflict with cancer treatment but of course you would need to check that whatever you do is safe for you.  All the best - do let us know how you get on.

  • Reeceregan Reeceregan alicia26218

    I too take Prolia, although only one injection so far, will have my second at the beginning of August. No side effects at all. Spinal t score was -3.8,  right hip - 4,  leff hip not much better. My risk factors (FRAX) are very high as well, plus I’ve been on prednisone since last June for PMR and GCA and will be on it for a while yet, if not always. I”m 63. I have never broken a bone, always been fit, slim, active, did a bit of yoga, Pilates, walking and worked for decades where my office was up a long flight of stairs which I ran up and down as a form of excercise. I also ate healthy, loved my dairy, and took a lot of supplements....and none of this was enough to save me from osteoporosis. So there you appears I have strong bones but they are not dense...they are like honeycomb. When I asked my rheumatologist if I could just treat my osteo naturally he lent on his elbows, looked me sternly in the eyes and said “well it hasn’t helped  you so far has it”. He’s right, however I had not taken K2, D3 or calcium supplements prior to being  diagnosed with my autoimmune diseases last year and I was diagnosed with osteoporosis just 5 months after that and starting prednisone. I really didn’t have a choice about the Prolia as I could break a bone sneezing or coughing...not to mention I can be a bit of a clutz and stumble over a rose petal. Yes, I’ve read the side effects of Prolia, and I’m not happy about having to stay on it for life, but who knows how long “life” is? I just make sure I walk when I can with my weighted vest and Nordic poles, I use wrist and leg weights when walking around the house, and do what I can when I can. Having PMR and GCA limits me considerably at times but I will not give in to any of these diseases. I want to continue to be able to do things in our retirement, not be bed ridden from falls or the  muscle wastage/extreme lethargy and intense pain etc that comes with PMR nor the cataracts/glaucoma/ hair loss that I now have thanks to GCA. If I have to take Prolia I will. Quality of life over quantity for me. 

    • alicia26218 alicia26218 Reeceregan

      I’m sorry that you are having to deal with Osteoporosis in addition to PMR and CGA.  That is a lot to deal with in such a short time.  But you seem to have a great attitude and determination to not let any of that stop you.  I like your energy and I hope to stand up to my diagnosis with the same resolve soon.  I understand your decision to take Prolia over the risk of a fracture.  You are one of the lucky people who have no side effects and that is reassuring.  Each of us are in a unique situation and are dealing with different circumstances. It may be the only option for me as well, but I’m still in the research mode and want a more thorough blood work and analysis.  Thank you so much for your reply and for sharing!     

    • Reeceregan Reeceregan alicia26218

      I fully support you doing as much research as you can. Oh, and when you walk, look down and look about 1  metre in front of you to avoid the potholes and the uneven paths. Makes window shopping a  bit harder have to stop to look up 😂😂 If you can avoid Prolia or any of the others by improving lifestyle choices and diet then give it a go first. While Prolia seems to be easily tolerated by the majority, it now appears to be a drug for life, and I wasn’t told that prior to the first injection. I was told by both the GP and the rheumatologist that I would only be on it for  3 years, so given my risks it was a simple choice. It wasn’t until someone put a post on this forum about relatively new research suggesting otherwise and me calling the dr in panic that he agreed it now looked like it was a choice for life.  It in my case I’m damned  if I do and damned if I don’t, but hey, I think i’d rather be on Prolia for life with no side  effects than  prednisone for life, if the last 12 months is anything to go by. Name a side effect and by geez I’ve had it...nasty stuff. 5mg to go touch wood, and hopefully no relapses.  💪 

    • tbulley tbulley Reeceregan

      HI Reeceregan, thanks for your insights, can you please expand or clarify a little. You mention that you always exercised, eaten healthy, including dairy and also supplemented, however had not supplemented with D3, K2 or calcium until the last couple of years. Does this mean you have missed these specifically in your previous diet, while presumably doing to good stuff like avoiding junk foods, soda, sweets etc, but missed out on some really essential stuff? My history has some similarities, plenty of exercise, healthy eating, however due to food intolerances and avoiding sunlight (protection from skin cancer!) I am certainly deficient in Vit D and probably boron. I suspect and hope that my exercise profile means I have lots of lean tissue and possibly (and hopefully) strong bones even if not so dense. So my bones possibly have a strong wrapping of muscle at this stage, and as I review my blood test results and what my diet has been lacking, I am finding links between my low (but still within normal) testosterone, low BMD (osteporotic), relatively high cortisol (edge of high limit), high SHBG (outside normal range) and foods/supplements that I am now taking. Even regarding exercise I have done less high impact running and weights in the past 5 years that previously and done more swimming and ski paddling which are not high impact activities. Relatively high cortisol, low Vit D and low boron impact the immune system, lower free testosterone increase SBG. I dont have confidence in, or expect, my GP or specialist getting intimate with my specifics and embarking on a convoluted journey with me. Rather they will prescribe standard protocols based upon their own training and experience. Your situation sounds very challenging and as you have started with Prolia, are you still reviewing supplementation and other exercise types that your GP/specialist might not introduce off their own bat? The osteogenic exercises look interesting and can be modified on normal gym equipment or even with no equipment to achieve the same effects of static muscle effort and compression, and as I understand some of the osteo drugs, levels of Vit D and calcium need to be supplemented.

    • Reeceregan Reeceregan tbulley

      Yes, you are correct in saying I have my missed the specific vitamins of K2 and D3 in my “pre-diagnosis” years. I had taken calcium on and off, more off than on really, as I 

      always thought I was getting enough through dairy as I could overdose on cheese, cream, milk, yogurt etc without blinking....loved them. Also being in Australia I spent a lot of time in the sun, and having a pool at home helped stay outdoors while excercising and soaking up D3. I would take magnesium, fish oil (triple strength), Q10 and a probiotic as well. However I have ALL the risk factors for osteoporosis and had obviously had it for many many years undiagnosed to have t scores as bad as I have. Couple that with having two autoimmune diseases that came out of nowhere ...healthy one day, struck down the next ....that required high dose prednisone originally (50mg before I could start the reduction) and I was a shot duck. I think my healthy past must have helped in that my bones are strong, if not dense, and I’ve never had an actual break, but I have badly sprained both ankles at different times.  What does annoy me greatly though is that when I sprained the first one about 13 years ago I had all the X-rays, scans and even an MRI as the ankle wasn’t healing in the classic text book way, and they told me I had broken “4 tiny internal bones” which was within the honey comb structure inside the bone. This though wasn’t classified as having a broken bone. Why didn’t they do a Dexa scan then if they could see I had honeycomb bones? Why didn’t they tell me then I had osteoporosis or that my bones were an issue??. I only started the K2, D3 and calcium supplements on the osteoporosis diagnosis in November but it was too late really, damage was done. And it wasn’t on advise of the drs, it was a friend of mine who manages a health food shop who suggested which supplements to take to strength en the bones. The excercises  I do know is limited by the PMR/GCA and how I feel each day, and of course I have muscle and joint pain as well most days but not enough to stop me. I do Nordic walking when I can in a weighted vest, or I get on my walking machine at least 3 times a week. In summer I get in the pool and do resistance walking and running in the water, star jumps, etc....I can do things in the water I can’t do on land. I have resistance bands as well that I use for leg and arm strengthening when able. On saying that all that, I rest A LOT. These diseases dictate what you can do and believe me I’ve learnt to listen to my body and pace myself, and if the body says lay down, I lay down....🙇‍♀️

    • alicia26218 alicia26218 Reeceregan

      Thanks for the advise about looking down when walking.  I'm much more careful now at work and everywhere I go, even at home.  Yes, window shopping will be a bit challenging and it'll take longer having to stop every timebiggrin  I think doctors don't always have all the information, I don't want to think they withhold it in purpose because it makes me feel worse. I wish there was a drug without side effects, but it looks like most of them manage/cure one thing and something else breaks. Glad you are getting a break from all issues prednisone caused you. 

    • alicia26218 alicia26218 Reeceregan

      Thanks for the advise about looking down when walking.  I'm much more careful now at work and everywhere I go, even at home.  Yes, window shopping will be a bit challenging and it'll take longer having to stop every time [biggrin]   I think doctors don't always have all the information, I don't want to think they withhold it in purpose because it makes me feel worse. I wish there was a drug without side effects, but it looks like most of them manage/cure one thing and something else breaks. Glad you are getting a break from all issues prednisone caused you.

    • tbulley tbulley Reeceregan

      Its complex and vexing stuff, like they should have said in the classics, "ageing is a serious business, death even more serious". I think the important issue around Vit D, Calcium, Mag, K2, Boron etc is not only quantity but combination. Its no good taking piles of Calcium if it gets deposited in the blood vessels because you don't have enough Vit D to transport it or K2 to make sure its goes to the bones and not to the blood vessels. This is my simplistic interpretation of my research - either way guzzling supplements without some perspective, input from a couple of medical people and your own reading and scepticism, is dangerous. Too many doctors are lab rats - they are indoctrinated by current medical thought (think about the transition when doctors discovered bacteria and started washing their hands between dissecting cadavers and delivering babies), seduced by drug company incentives and unable or unwilling to question orthodoxy. Interesting note about Calcium, I figured I was getting my 1200mg of this in my diet despite removing cows dairy, used this calculator (one of many) and discovered I was eating around 900mg and probably had been for 1-2 decades. Having said that my serum Calcium levels are on the low side of normal range, but even the published ranges need to be questioned and checked with different sources. My report from the osteo/dxa people gave me two 'deficiency' levels of Vit D in the same report, one was 50nmol, the other 75nmol, thats 50% different!

      Are you using foods and supplements to help stabilise your adrenals and reduce inflammation for PMR and GCA? At the end of the day dis-ease means our bodies are out of balance with the rest of the universe, and I dont mean that in the spiritual sense. We are the product of billions of years of evolution because a random mixture of elements has combined and recombined countless times and found to survive better than countless x countless other combinations that were unable to survive. This means some part of the recipe is out of balance as measured by our ability to survive and thrive. Getting the right recipe is easier said than done, but there is a lot of really good information hidden in the googles guts and some very talented diagnostics and healer. My immune system is out of balance, I have some allergies and intolerances and get sick easily. I am a big fan of many types of exercise, however pushing these too hard has made me sick, despite using various herbs to partly counteract this. Since I have boosted my Vit D levels in the past 9 months, my immune system (touch wood) appears better, AND Dr Google tells me that Vit D is also needed for the immune system (as well as bones and cognitive ability). Does this sound like the discussion I will be having with my GP of specialist in a 15-30 minute appointment? The fact that you were told about supplementation, by your friend and not by a practitioner, should alert our BS radar when we deal with the medical profession (and anyone else) until we have done our own validation. I wish you well in dealing with your health issues, hopefully these discussions help some.

      Moderator comment: I have removed the link(s) as the link was not formatted properly. If users want this information please use the Private Message service to request the details.

    • Reeceregan Reeceregan tbulley

      That’s an interesting article, thank you. I believe Prolia has only been around for approx 8 years, and as a denosumab rather than a biophosphonate there isn’t a lot of long term research regarding it, hence why it’s only just coming to light that it’s now more a long term drug than a short term fix, so to speak. Although I don’t drink or smoke, I’m certainly a “shot duck” as far as all the other risk factors are concerned, and having to stay on prednisone doesn’t help. I think I can just thank my lucky stars I’ve not had a fracture (other than the “internal breaks” I mentioned before in my foot). That injury 13 years was more ligaments and tendons and nerves, how on earth I didn’t break it I’ll never know. The last one in November was also just a bad sprain. Staying upright now is my main goal!

    • Anhaga Anhaga tbulley

      My doctor has been pretty good.  She wanted me to take AA but I refused, and I've actually improved my bone density without medicines.  However I took note of the fact that she was much more anxious that I start AA just after she had attended a two day osteoporosis seminar.  I wonder who sponsored that workshop for doctors?

    • Reeceregan Reeceregan tbulley

      I certainly wish my doctor was the proactive type, rather than the reactive type... maybe then he would have told me about D3 and K2 and how important they are for getting the calcium where it’s supposed to go...especially as my bloods indicated high levels  of calcium! I couldn’t understand how I could have such severe osteoporosis if I had too much calcium until Eileen mentioned parathyroidism and to get that checked before going on Prolia. In I went asking for another blood test and lucky for me that test was negative but again, it was a third party who put forward that possibility not the dr. When I was first diagnosed with PMR/GCA yes I did change my eating habits considerably, I cut out sugar, salt, carbohydrates and a lot of dairy (I hadn’t been diagnosed with osteo at the point),  plus I stated seeing a naturopath who made up some specific herbs etc after testing me to see what my body was lacking. There was 6 different areas needing “help” and gut health was one of them, along with liver (I’ve always had a fatty liver). I took these potions, increased my intake of bone broth, cut out the additives mentioned above, increased my leafy greens and generally  tried to eat a lot of anti inflammatory foods. I increased my yoga and stretching excercises as they were nice and gentle and didn’t wear me out too much. It wasn’t for another 6 months that the osteo was diagnosed  and of course I was told to  increase the dairy and stop the yoga because of the twisting and bending involved. So you see why I said I was damned if I do and damned if I don’t. 🤦‍♀️

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