PMRGCAuk
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My "Osteoporosis" Journey

This is just copy and paste of an account I wrote to keep track of things for myself. Please note I have no medical training and I haven't checked to see if the web links at the end still work. I think most will.

Since writing this account I've had a second DXA scan showing that within a year my bone density improved from -2 to -1.6. This was the main measurement at the hip, but all the measurements improved, including the spine. They are no longer recommending that I take drugs and next scan should be in 3 to 5 years. My doctor was amazed and asked me how I did it!

Background – “high risk” small-boned Caucasian female over 65, taking prednisone for polymyalgia rheumatica since June 2015, suffered broken leg (tibial plateau) when leg was severely twisted when I walked on ice February 2014. My T-score I is -2.0 but I am in the high risk category. When starting prednisone I was told that bone thinning was an effect of prednisone so I took my calcium and Vitamin D supplements, bought a pedometer and started walking more. It was at my request that I finally had a scan in September where the osteopenia was diagnosed. Even when I had the broken leg no one suggested a scan would be a good idea. All I knew was that the bone healed rapidly and well, I had not needed surgery.

After the diagnosis my GP recommended medication but by then I had started hearing about the potential for horrific side effects, so turned her down and started serious research. I started by talking to my friends. Two of them had successfully moved from osteoporosis range into osteopenia through non-medical means. One remains faithful to her regimen and continues to improve, the other has slacked off and become osteoporotic again. Suggestions from the more dedicated person included Nordic walking and parkour but she does not have polymyalgia (PMR). She also has taken various supplements under the advice of a herbalist. I am not ruling out her methods but am not completely following in her path. I took up Nordic walking about three months ago. I tell you about her because her experience is what gives me real hope that “natural” methods work. A sister-in-law was taking Fosamax but had to discontinue because of side effects (I don’t know what the side effects were).

I have done a lot of reading. You will find several good sites on the internet but if they are heavily promoting certain products it is a good idea to balance their advice with what you read elsewhere. I am convinced that the following regimen is the best for me, and I expect to be adding to this, and modifying things, as I continue to learn more:

Exercise: I have a weighted walking vest which allows me to gradually add small amounts of weight. This is to challenge the skeleton to lay down more bone. I am learning Tai Chi which is not only excellent for improving balance (helps to avoid those bone-breaking falls) but has been shown to improve bone density. I use my pedometer to make sure I get 10,000 steps a day. At present this includes all my daily activity, not just my walks. I may increase this in the future. I also carry on with long-standing physio exercises for osteoarthritis and practice a bit of yoga.

Diet: Because another bad side effect of prednisone can be diabetes I have to be rather careful with my food choices, but as long as you are eating a well-balanced diet you can consider adding the following supplements:

Calcium hydroxyapatite (preferred because it is most easily absorbed into human tissue and I've read that it is more readily absorbed by people on steroids) but calcium citrate also a good choice.

Vitamin D3 (Iately I’ve had to cut back D and calcium because of too high levels of D, possibly caused by unrelated ailment, sarcoidosis, an issue which will not affect many people)

Vitamin K2 (K2-4 and/orK2-7, K2-7 is preferred) Please note that Vitamin K2 (not K1) is nearly absent from modern diets, and is the vitamin that guides calcium into our bones rather than letting it collect in our organs or inside our blood vessels. Unless you have access to grass fed cattle and their products, and free range hens eggs (not grain fed) you will almost certainly need to supplement this vitamin.

Sources of Vitamin A betterbones.com/bonenutriti... I have read conflicting advice about whether retinol or beta carotene is better, and have decided that natural sources (food, or maybe cod liver oil) are safer choices than taking a chance with the latest fad in supplements.

You should have enough vitamin E in your regular diet, otherwise make sure you get a mixed tocopherol version

Magnesium which is also something many of us are deficient in. Apparently calcium interferes with absorption of magnesium so a separate supplement may be a good idea for a while until deficiency is dealt with. Lots of foods have magnesium although as with so much these days it depends on the soil they’re grown in.

I am taking a bone strengthening supplement from our local organic foods store, also Vitamin K2 supplement. I also take cod liver oil for the A and D content. I don’t think I’ll have much luck with a reliable source of genuine free range eggs until spring, but at least I know what to look for then. (Yes, I do eat prunes for the boron, but I don't believe the hype that they "cure" osteoporosis!) The reading I have done includes websites and books. As I indicated above, always read with a critical eye and take the best ideas from everywhere. I don’t think anyone has all the answers, and also we are each different, will have varying risk factors and so forth. But I hope my experience gives you some ideas, and also some ammunition as you withstand the medical profession’s strangely strong idea that we must take their dangerous medicines!

Books:

Kate Rheaume-Bleue, Vitamin K2 and the Calcium Paradox

Lara Pizzorno, Strong Bones (good book but she undermines her credibility by promoting certain supplements and a specific Zumba version)

Dennis Goodman, Vitamin K2 the Missing Nutrient for Heart and Bone Health

Dean, Carolyn, The Magnesium Miracle (2014 edition)

Websites:

authoritynutrition.com/vita...

australianprescriber.com/ma...

betterbones.com/osteoporosis/

osteopenia3.com/Natural-Ost...

saveourbones.com/about/ BUT note authoritynutrition.com/the-... Also, as I do more reading I begin to wonder if she is as up to date with recent research as she should be. There are some good exercises on her website, however.

hindawi.com/journals/jeph/2...

metadocs.com/pdf/pp_stronti...

ncbi.nlm.nih.gov/pmc/articl...

openheart.bmj.com/content/2...

31 Replies
oldestnewest

I've posted this because so many people have asked for it, usually through the Bone Health forum, that I thought if it posted successfully it would be a lot easier for me to share.... Forgive me!

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THANK YOU! I also added it to my Websites (pinned post) under Bone Health for easy access.

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Thank you so much for this. You are now my research. Because of you I have purchased a weight vest and wear it around the house.. will begin to add it to walks ...and I took up tap dancing...and intend now to practice 1/2 hour a day and also get in the 10,000 steps. I started with -2.7 on the dexa scan.. have had a hip replacement (was a runner..marathons etc) and a doctor who nearly held my mouth open to insert Fosomax. But I refused. I am taking the calcium and magnesium and D but will add the cod liver oil .. I also take CoQ10 because someone told me that my AURA visual migraines which I started having much more frequently when I started on prednisone would go away ... and they have! none in 2 months. However i am a fool for the placebo effect if nothing else!! Thanks HeronNS you are the BEST!

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Thanks for the post. I had mentioned you had workable plan today so I am glad you posted this...hope you copied and pasted it too because I suspect you will be called on in the future Too!🌻

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What a wealth of information! Thank you.

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So very happy for you. Thanks for all The info.

Edward

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Thanks for all the well-researched info HeronNS, I'm hopeful the time will come when I feel less ill and can start gentle weight-resistance exercises. In the meantime, a micro-nutrient rich, carefully balanced diet plus bone supplement and Vit K2 is hopefully helping a little. BST begins at the weekend with its promise of longer days and soon, my favourite month of the year, May, when everything around is bursting with energy. Hope your walking/fitness programme is going well - infinitely preferable to the AA route.

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Thank you for this HeronNS .

I was diagnosed with PMR May 2015 and your posts have been a great help to me.

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Thank you!

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All I have to do is put on my warmest winter coat in Boston & I have a 10 pound weight! I’m wondering we sell Serpurga Tennis shoes here (from Europe) and they are sooo heavy I would think that would make a nice addition. I am anxious to learn more about Nordic walking. I was offered the same medicine and luckily turned it down. Now I know how fortunate I am.

Thanks for sharing.

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health.harvard.edu/blog/cal...

This is a rewrite of a 2015 story. Interesting...”Indeed, in 2015, this very blog reported on similar studies of calcium supplements, noting that calcium supplements have risks and side effects, and are not likely indicated for most healthy community-dwelling adults over 50. These folks are not in a high-risk category for vitamin deficiencies, osteoporosis, and fractures, and we usually advise them to get their calcium from food.”

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Yes - but the risk is greater in people on calcium supplements alone - the risks are not seen in people with taking calcium combined with vit D and who have a medical need as we do, being on pred.

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True, and she doesn’t really list any risks or side affects.

I’m in a quandary. My Rheumy told me in Jan. to go from 5 mg pred to 4. So I didn’t I slowly went to 4.5 in 38 days. But she says I must go back to 5 & then start. Is this a “control” thing? (I really like her btw.) So I inquired why don’t I just go back to 7? I felt really good there & just like pre-PMR. She did the blood work (came out awesome) and instructed me to go to 5 for 3 weeks & then start tapering. AGAIN! I gave her Kate’s book & a scribbled up copy of my taper schedule. I guess it won’t hurt to go back up...but what’s the point?

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Your guess is as good as mine I'm afraid. But control??? Yes, maybe...

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We aren't "healthy". And if we take moderate calcium supplement, not all of us get enough from our diet especially when on pred, as well as the other things which aid calcium metabolism (D, K2, magnesium) we should avoid the known risks of calcium floating around aimlessly in our bloodstream.

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Thank you for taking the trouble to post this valuable and inspiring advice.

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Thank you. This is an inspiration to all of us who want to avoid bisphosphonates and the risks they entail, and to work towards improved bone health in other ways. I'm good on the dietary side but very lazy about exercise, but I'm determined to have a better reading whenever I have another DEXA scan.

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Very useful, thankyou. I've been looking at vitamins and minerals to ensure good healthy balanced eating for myself and also for families I work with so this is great - and much easier than some of the books I have dipped into!

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You are an information guru! I’ve been taking k2 since I read your post a few months ago. We all appreciate your research.

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Thank you so much for this. I had Reclast last summer when I was diagnosed with PMR/GCA (Reclast is a yearly infusion for osteoporosis. I just did not know what to do and I followed the docs.

My daughter has told me that “raw cheese” is also good for osteoporosis (there is some study on that).

I am going to try Tai Chi as I have noticed my balance is not so good nowadays.

I am so grateful to you for all your information.

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I've slacked off the tai chi lately as the classes are no longer offered. Must be more diligent again as I think my balance is not as good as it was a few months ago. Thanks for the reminder.

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You are my inspiration HeronNS! Like you I am small and slight of frame and my Dexascan showed my to be osteopoenic early last year. I have been pretty good about remembering my daily I-cal (taken in two halves at lunchtime and evening) and added K2 at your suggestion (I have just found it in an oral spray form which is a bit cheaper than the tablets in the UK and very easy to use). I have also just started using a magnesium oil which you spray on and rub in before bed or after shower. I am fortunate enough to have my own flock of free range chickens who have, amazingly, laid all through the winter, so maybe my K levels are ok. Can you have too much?

I bought a rebounder to try and use that exercise to improve bone density but I have not been very good about using it regularly - note to self, must try harder. But in between grandparent duty and elderly mother duty and remembering I do have a husband who likes to see me occasionally, there isn’t enough time -or energy- in the week. Perhaps a weighted vest would be a good idea just for walking around on a daily basis? I do practise Pilates regularly as I’m sure that balance and coordination are as important as bone density as we age.

Down to 2mg pred now but staying at that for a bit before I attempt the next .5 drop as I haven’t been feeling brilliant and it may be that I’ll have to stick at this dose for a bit. But my recent blood test showed CRP and ESR levels to be very low so fingers crossed it was nothing more than doing too much. I’m trying to put a few spoons in the bottom drawer as a reserve!

Thank you again for your research and encouragement.

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Just what I needed!!

Thank you,

Diane

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Thank you Heron. Some very good advice. I too have started on the K2 which I wouldn't have known about without your advice.

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I wouldn't have known about it either, save for word of mouth!

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Thanks for the great info, Heron. I’m curious about what you say about calcium interfering with magnesium absorption. I’ve been taking my vit D in a supplement that also contains calcium citrate, magnesium citrate and magnesium aspartate. Should I be taking the magnesium separately at a different time from the calcium?

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What I've read is that taking calcium without magnesium can cause an imbalance. If your supplement contains both you most likely have maintained the balance. When calcium outweighs magnesium it makes it hard for the body to absorb magnesium so in that case you would take the supplement at a separate time. In nature, in our foods, the two are often found together.

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Hi. Can I please add my sincere thanks to you for all the research and information.

I am so glad ( so far, anyway) that I refused the medication offered to me and did some research too.

I just wanted to share what I discovered too, in case it helps anyone.

Please get your blood calcium levels checked too. Mine are just a tiny bit raised and could be thought of as insignificant but I found out that I should have my parathyroid levels checked - also slightly raised- because having hyperparathyroidism can lead to bone density loss and a small operation can reverse the osteoporosis as much as 30%, the same amount as the drugs would.

I am just waiting for a scan and then expect to have this sorted.

When I spoke to the endocrinologist consultant he was so glad I didn’t start on the meds because they would have made NO DIFFERENCE!

Please just get checked- this is all new to me- I am fit (well relatively so 😆) and had no idea about any of this until I fractured my pelvis.

Take care everyone and thanks.

Fran 😉

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very interesting and informative article thank you so much for posting. I will be be reading up on the vitamin K2. Thanks again.

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Oh my gosh reading this again and deeply grateful for it. Will be utilised I can assure you. Xxxxx. One question I have. I read that the high fats which occur in dairy products do not cause cardiovascular problems. I know that the cream of the milk contains vitamins a and d. I have also found a spoonful of heavy pure cream twice a day not only staves off hunger but evens out blood sugar plummeting. I was terrified to eat cream due to weight and cholesterol but I feel it is helping. Any comments welcome xxxx

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There is no vit D in cream unless it is fortified milk - cream as such isn't, not even in Oz I don't think though some milk products may be.

mja.com.au/journal/2002/177...

Whether dairy fat contributes to cardiovascular problems remain hotly disputed (I choose to believe they don't). However, milk and other daity products besides butter are NOT high fat. Milk is typically 3.5% fat - by no stretch of the imagination can that be described as high fat!

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