I’m 61 and diagnosed with osteoporosis – Devastated!

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!  

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.

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!

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.   

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!

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. 

I do not have any problem taking Prolia.Google Anastrozole for side effects yourself to see if it has a side effect of osteoporosis.

Thank you for your reply and invitation to read about your journey with osteoporosis.  I will definitely read it and I hope it's something I can incorporate in my life. 

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!     

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 though...you 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.  💪 

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.

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....🙇???

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  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. 

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.

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.

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I hope you can see the attached image, its from Japanese osteo guidelines where they say among other things that bone strength comes 70% from BMD and 30% from bone quality.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3517709/

 

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!

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?

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. 🤦???