My Osteoporosis Journey: I've just... - Bone Health and O...

Bone Health and Osteoporosis UK

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My Osteoporosis Journey

HeronNS profile image
20 Replies

I've just realized it may not be so easy for people on the Bone Health forum to find this account which I posted on the PMRGCAuk forum a few months ago. So here it is.

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...

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HeronNS
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20 Replies
Telian profile image
Telian

Very interesting and informative Heron, thank you for sharing. You've given me lots of advice in the past which has made it easier for me to understand at first reading. As you say we all different but your research is far reaching and for me a great help. I can take the pieces I am interested in and delve further if I have the need. I am starting Tai Chi tomorrow so this is a timely reminder as I was hesitant about where to go - the ones near to me are John Ding Academy another is Taoist Tai Chi - how do I know which to choose?

HeronNS profile image
HeronNS in reply to Telian

I learned (or am learning, it's a lifelong process) twenty-four (or short) form tai chi yang style. I don't know anything else about tai chi. Unfortunately our instructor is no longer able to teach as I was hoping to be learning the long form by now. What I suggest is you try to contact the instructors of both classes and find out whether they accommodate people with disabilities, like someone with back issues or fragile bones, or whatever you feel is your vulnerability. Because tai chi has been adopted mostly by older people in the West there shouldn't be a problem, but you do want to find someone who will patiently teach not only the exact correct move but also ways to safely modify moves if necessary. Small classes are better for this. Like yoga you should never do a move which hurts.

Telian profile image
Telian in reply to HeronNS

Thank you for the tips, very useful.

Megams profile image
Megams

~Thank you Heron - most interesting reading what has worked for you.

You have researched then researched some more - a lady after my own heart.

You may remember I too do exactly the same & as "yes" there is a big cross over within the medical & the integrated model.

Finding a balance between the two is tricky, however it is still achievable through trial & error & of course we are not always liked by the black & white medical fraternity.

Well done & hope you are now settled into your new abode without it having taken too much of a toll on you adrenals!!

Blessings once more.

HeronNS profile image
HeronNS in reply to Megams

Haha. Tomorrow we meet with a fourth contractor. I think both hubby and I feel a bit uncomfortable entrusting our abode to people we don't know and who don't know us and don't seem especially interested in making sure we're all on the same page. But this person's website makes me think his prime directive is to work with his customers to give them what they want. Plus he's good friends with friends of mine which is how we heard about him, and he agreed to meet with us within 24 hours of hubby's initial phone call. He also offers emergency services which gives me hope he's nimble and able to get cracking on projects very quickly.

I've been feeling fairly stressed, but am also finding the delay may turn out to have been a good thing as certain questions about what we should do are gradually being answered as my brain works away on the issues. Like waking up at 5:30 one morning with an answer in my head which took away a surprisingly huge burden. In our current home we have a tiny bathroom, but it is very functional, has everything we need, including ample storage. The bathrooms in the condo are larger, and instead of a pedestal basin each of them has a moderately sized "vanity". Never having lived in a place with a vanity before this is a new piece of furniture to me. I didn't like them and my immediate assumption was we should replace them. Yet everything I've looked at seemed to be "cheap", as well as designed to, in one case get scratched and stained unlike porcelain, and in another to provide crevices to harbour and nurture mildew. In order to get something which would satisfy my champagne tastes I'd be spending far more money than we should. But I woke up that morning and said to hubby, why do we even need a vanity? Let's just get pedestal basins like the one we have in our home now, which we like and still looks classy and pristine after eighteen years. Storage can be provided another way. And it came from asking the question, "What is the purpose of this piece of furniture?"

I chuckle when I think maybe I'll end up with this lovely new home, and I'm going to fill it up with our old mismatched furniture!

Telian profile image
Telian in reply to HeronNS

It doesn't matter what you fill it with, Mrs N said they painted a room the same colour as in the old house as they liked it - good tip for me, that's what I'm going to do!

HeronNS profile image
HeronNS in reply to Telian

That's what I first planned to do, but it really isn't the right colour for the new space. I think we are going for some kind of soft warm grey and will get our colour from things like cushions and window coverings. If my unconscious has enough time to nibble away at all the problems I know the right solutions will come.

Telian profile image
Telian in reply to HeronNS

Accessories make a room - and you can keep changing them! Happy shopping...

521TMR profile image
521TMR

Can I ask which bone strengthening supplement you are using. I prefer plant based supplements rather than the calcium carbonate prescribed my doctors. However, a recent dexa scan revealed further bone loss. I do try to get most calcium from my diet but supplement when necessary and also take K2 and D3. Thank you.

HeronNS profile image
HeronNS in reply to 521TMR

At the moment at lunchtime I take two capsules which include calcium hydroxyapatite and a bunch of other bone-friendly nutrients (one third the recommended dose for that supplement) and near bedtime two capsules of calcium citrate, which has only a couple of other things with it. The calcium helps me get to sleep, hence the bedtime dose. I always have a little yoghurt at the same time, and a lunchtime dose rather than with breakfast to avoid taking calcium at the same time as my (now very tiny) dose of prednisone. There was a study done which showed that yoghurt (I only eat plain, unsweetened and NOT skim milk yoghurt) helps the body to absorb calcium better. You need a little fat present in the meal when you take calcium.

If you are doing all the right things has your doctor checked to see if there is another cause for your thinning bones? Some one has posted not long ago about issues with, I think, the parathyroid, and when that was sorted out her bones began to improve.

Janey453 profile image
Janey453

Thanks for sharing that Heron - so informative (and inspiring!).

Three questions:

1 Do you wear the weighted vest all day, or just on your walks?

2 Which 'bone strengthening supplement' are you taking?

3 Have you ever considered Pilates?

HeronNS profile image
HeronNS in reply to Janey453

I confess I wear the weighted vest mostly in the winter when I can hide it under my coat! I really must get into the habit again. You start by wearing it with a weight which you are used to carrying anyway. I had been lugging around a backpack with 5 lb ankle weight in it so started at that level. You wear it for a short period of time for a while, gradually increasing until you can wear it all day. Then you add a small weight, wear that for a while, and so on. Depending on the condition of your spine you may need to be more or less careful.

Jumpey profile image
Jumpey

Thank you so much for posting all this helpful info. Good luck.xx

tikigod18 profile image
tikigod18

WOW! THANK YOU for re-posting this. I have been following something similar to what you have done. I have not had a scan since 2014, no meds, and actually have another one today. I do a lot of weight work at the gym, as well as fast walking/stomping on the treadmill.

When it gets cooler, I can walk outside, but living in Fl. it is hard to be walking in hot, humid weather. Keep posting as you learn other information!

HeronNS profile image
HeronNS in reply to tikigod18

Oh, please let us know how you have done! I won't get another scan until next year, and only if they don't cancel it on me - they tried to cancel my second one, two years ago now.

tikigod18 profile image
tikigod18

will do, but I won't have results for a while. SO PROUD of you!!

Meganisi profile image
Meganisi

Thanks for sharing! Very useful

Spanky2019 profile image
Spanky2019

Enjoyed reading about your major home remodel. Got me thinking. We hire contractors for home remodel. We check credentials, references, have multiple planning meetings, carefully considering measurements, colors, decor and more. Be good idea if we applied similar attention and planning to how we tend to chronic illness. Scrutiny from the DRs we choose, tx & rx planning...

HeronNS profile image
HeronNS in reply to Spanky2019

All very well if we have much choice in who our doctors are. When there's a shortage we take what we can get. I was very unlucky for a while after my old doctor retired, but now I have someone who respects me and that makes all the difference.

Spanky2019 profile image
Spanky2019

Yes, HeronNS choices, options are so helpful. Medical here in US has changed so much and not for the good. I think I am lucky and have good medical team. Just pervasive, difficult illness and probably long period of time untreated. Then not initial proper treatment. Take care! Hope you have a good day.

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