Osteoporosis and osteopenia: As the issue of bone... - PMRGCAuk

PMRGCAuk

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Osteoporosis and osteopenia

HeronNS profile image

As the issue of bone thinning is a constant worry for those of us on long term corticosteroid treatment, I thought this YouTube video posted recently in the Bone Health community would be of interest. I will add the link to my own post on bone health in our FAQ:

healthunlocked.com/american...

Owing to the way HU cookies appear to be working today, this link will lead you down a bit of a trail.

Both MrsNails and PMRpro working from different computers have managed to link directly to the video in replies below. My computer is obviously smarter than I am and I cannot outwit it today!

56 Replies

Thank You HeronNS as always! I will add it to FAQ in its own right also. Cheers

MrsN

HeronNS profile image
HeronNS in reply to MrsNails

Thanks. Instead of taking us directly to the video it takes us to my post in American Bone Health, which is a nuisance! Hopefully your link won't be muddled by the cookies on my computer!

MrsNails profile image
MrsNails in reply to HeronNS

It’s taken me to your Post, l’m watching the Video now so l will see if l can link it directly…..

youtu.be/2Qv01Wfq3LQ

HeronNS profile image
HeronNS in reply to MrsNails

That's what I kept trying to do. The post I made on American Bone Health took me to the original posting on Bone Health. When I got rid of that, I got one of those non-functional videos as apparently I had "rejected" HU's functional cookies!

So, good luck!

MrsNails profile image
MrsNails in reply to HeronNS

Looks like it’s worked 🤞🏻

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I usually put the video up and click on the bit to watch on YouTube - I find watching via HU results in hopeless buffering - and then copy and paste the YouTube link

HeronNS profile image
HeronNS in reply to PMRpro

That is exactly what I did. Then when I posted it HU gave me a non-functional link. I tried several times. I posted it in three places American Bone Health, PMRGCAuk and my own osteoporosis post) and at no point was I able to avoid the link going either to the original reply in Bone Health, or to my post in American Bone Health! I think I would have had to clear my cookies and the last time I did that (a few days ago) half of my websites signed me out!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I know - hate deleting cookies!!!! You lose too much!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

How bizarre - worked for me, just tried it ...

HeronNS profile image
HeronNS in reply to PMRpro

My link?

PMRpro profile image
PMRproAmbassador in reply to HeronNS

No, inserting it by going via YouTube

HeronNS profile image
HeronNS in reply to PMRpro

Well, I guess because I watched the original video via the person's post my computer has got stubborn. Or HU has. It's just a puzzle. At least we can post videos now.

LeighDelaine profile image
LeighDelaine in reply to HeronNS

Really interesting video. Is he saying that we shouldn’t be taking substances such as Alendronic Acid because it’s not aiding ‘meaningful bone density’?

HeronNS profile image
HeronNS in reply to LeighDelaine

Actually yes. But he also says, and this is most important, what we should do instead. We don't just refuse bone meds and carry on as before. :)

I will say that getting myself started in 2015 on a protocol so similar to what he suggests it was eerie watching the video was not really that easy. I was extremely motivated, however.

copy paste this link:youtu.be/2Qv01Wfq3LQ

in a new window and then you don't get all the cookies nonsense

Yesterday I tried that and first my computer wouldn't co-operate, and then HU showed a non-functioning video because I had "rejected" the HU cookies!

Thank you very much for that. Interesting he says calcium supplements don't work! I wonder if there is actually a downside to taking e.g. evacal d3? I halved my prescribed calcium dose some time ago, and take a separate D3 supplement, and try to increase dietary calcium. Can anyone recommend a good mineral supplement?

HeronNS profile image
HeronNS in reply to pinks33

I have to confess I do take a calcium supplement, but never calcium carbonate. I do not take the "recommended" amount, but somewhat less. However I should add that I started taking calcium citrate when I hit menopause at least fifteen years before PMR and the "osteopenia" diagnosis, so unless pred had a very deleterious effect on me in my first three months I suppose we can conclude that calcium supplements don't work. I started taking Vitamin K2 after that but I had been taking vitamin D before that and until I learned better a regular multivitamin. I also found calcium hydroxyapatite which I read was supposed to be better absorbed by people on pred. My second DXA scan was better than the first, after doing very much what is suggested in the video, which is why I am so excited about it and want to share!

PMRpro profile image
PMRproAmbassador in reply to pinks33

I took a calcium supplement for several years after starting pred. It has worked - very little change in bone density in over 11 years, a lot of it at above 10mg. However - I also take a MUCH higher vir D supplement - 4000 IU. And not K2 although my diet includes grass-fed meat and dairy products including yoghurt, a lot also from grass-fed cows. And magnesium.

pinks33 profile image
pinks33 in reply to PMRpro

Maybe it's your diet as much as, or more than the calcium supplement, that has helped your bones over the years?

HeronNS profile image
HeronNS in reply to pinks33

I think so. PMRpro lives where I believe the food supply is much healthier than many of us Westerners can easily find these days. Since starting this journey of mine it has become easier to get products from organically raised animals, but they are still by no means ubiquitous.

HeronNS profile image
HeronNS in reply to PMRpro

I believe the point being made is it's not the calcium supplement which works, but the other things - because apparently most Americans (the video doctor must be American) get enough calcium in their diet, but without enough D and the near absence of K2 in the same people, and also a lifestyle that doesn't involve enough of the right kind of exercise then they become vulnerable to bone deterioration. It's like calcium is at the bottom of the list of things we must consider. It is interesting the number of people who, when they check their calcium intake, discover they are already getting enough, or close to enough, without an additional supplement and it's lazy of the doctor to just prescribe more calcium without proper education about all the other factors. The average North American diet will not contain measureable Vitamin K2, as we've discussed before, because of the way the animals are raised.

Also, at start of pred my doctor told me to double my Vitamin D supplement, which with what I was already taking, plus the additional amount in my calcium supplements at the time, amounted to about 4000 IU per day, and resulted in too high a level of D for my system (presumably because of the sarcoidosis diagnosis). Even today I have trouble getting the exact right balance not helped by the fact that I can't have just one year with a test every season in order to figure out the right dose, so I suppose in a way it's a bit like being on a bloodthinner and having to work out how much Vitamin K2 is safe to take. Life could be simpler!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I definitely needed the calcium supplement at the start - having been told to give up dairy for cholesterol reason. That didn't last long though I do eat much more in the way of calcium containing foods now than then. Since I pay under the system here I can have vit D tests and dexascans as often as I like. About 25 euros for vit D and 37 euros for a dexascan seems a bargain ...

HeronNS profile image
HeronNS in reply to PMRpro

Okay then. You needed the supplement or you would have been deficient. Calcium is needed for more than our bones of course. But extra calcium doesn't cure bone thinning. :) Or prevent it, apparently, in all cases. Obviously I needed something more. I think it was Vitamin K2!

I suspect not many doctors offer the lifestyle and diet advice in the video, rather than automatically prescribing alendronic acid etc. Mine certainly didn't. I thought the brick analogy was spot on for explaining about meaningful bone density. This website may be helpful in explaining in a little more detail what was outlined in the video. bones.nih.gov/health-info/b....

HeronNS profile image
HeronNS in reply to pinks33

Mine wanted to put me on AA as a preventative when I started pred. Of course I refused, asked for a scan, and did a lot of research. She got much more keen after attending an osteoporosis workshop. I've often wondered who sponsored this workshop! However after my second DXA scan no more was said. As patients we really do have to be our own advocates, and with the large amount of accurate information now on the internet we can, although that does require a certain level of media literacy and social media smarts!

My GP asked me last week why I wasn't still on lansoprazole, three years after a GCA diagnosis! I learnt a great deal from this forum about the various drugs we are routinely prescribed, e.g. how one drug is supposed to build bones (AA) while another destroys bones (ppi's), and the safer alternatives. I took the ppi for a few weeks and then switched to yoghurt with my morning pred. As you say, we really do need to educate ourselves and assume responsibility.

Thanks Heron, it was a great video. Pretty sure I'm good with the Vitamin D (just had it tested), K2-Mk7, and my diet, but really struggle to find a good mineral supplement. I was taking calcium long before PMR, and at that point, 7 years ago, told to increase to 1200 mg. I stopped taking it 2 years ago when calcium showed up where it wasn't supposed to. I can't remember where at the moment. Now, if only I could get the weight bearing exercise done as often as I should.

Thanks for the link. I’ll definitely watch this!

Wow Heron. That's scarily enlightening! I'm due to see rheumatologist at end of Aug and I'm definitely going to discuss stopping the AA. Why am I taking a medication that will eventually cause an equal amount of damage!! It's not resolving the bone issue at all....it's merely putting a sticking plaster on it, as they say. I'd much rather have a go at managing it myself. I don't smoke or drink and I'm able to exercise moderately, plus I walk daily and do the yoga for osteoporosis and although I already eat very healthily I'm more than happy to adjust my diet further. Why oh why don't our GP's/specialists tell us this!! Madness. Thankyou 'muchly' for that.

😄

HeronNS profile image
HeronNS in reply to Kendrew

It may not be quite as awful as he suggests. I believe what has been detrmined (so far) is that a couple of years of AA for someone who is really seriously osteoporotic can be helpful. it's the longer term use which is so damaging. It also, of course, emphasises that ppl who are not in serious condition should not necessarily be put on bisphosphonates. If I'd suffered compression fractures or other sponataneous OP caused fractures I'd do everything I could to stop further injury, and that might include a year or two of AA. The ideal, of course, is to avoid the situation in the first place. Young women need to be taught more about looking after their skeleton.

Kendrew profile image
Kendrew in reply to HeronNS

I agree completely. I'd no real idea that I was at risk of osteoporosis (pre-diagnosis) and with little experience of people who did I wasn't able to pre-empt the osteopenia I was obviously developing a few years ago. Wished I'd known back then what I do now!

HeronNS profile image
HeronNS in reply to Kendrew

I've always counted myself lucky that in midlife I started working in the public library and my job for several years, and to a lesser extent later, included a fair amount of pushing, pulling, bending, stretching, and lifting. It's known as shelving books! I also took up walking to deal with depression. In spite of all that I was diagnosed osteopenic in 2015, and having no pre-pred baseline I'm assuming that pred didn't help, nor did retirement in 2014. I hate to think what my condition might have been had I not been active. However, perhaps adding Vitamin K2 to the mix would have helped even more. I never heard of it until after the low bone mass diagnosis.

Kendrew profile image
Kendrew in reply to HeronNS

I take K2 now but only found out about it because of this forum. No medical practitioner has ever mentioned the important role it plays. I find that so disheartening. What else do they not tell us that we really should know!!My father had PMR the last 8 to 9 yrs of his life and could never get off the last ½mg of pred. He took calcium supplements but no K2 and developed blocked arteries and heart issues as a result. One can't help wondering if taking K2 might have either prevented or at least minimised some of those health problems. We'll never know.

Many thanks for this HeronNS, I found it enlightening. .

Thank you so much for the link. I have osteoporosis due to the steroids with a high risk of fracture, took AA for the first 18 months then stopped as felt lousy on it plus read a lot of disturbing facts re bisphosphates. I have been referred twice over the last 3 years to the Osteoporosis consultant & neither time was the condition explained so succinctly as by the doctor on the video. Fascinating & so helpful.

HeronNS profile image
HeronNS in reply to Sho-Sho

I know. I was so excited when I watched this. It supported what I've done for myself, and found useful. I wish young women (and men) were taught more about how to look after their skeleton.

Thank you very much for this information. I knew little about the role of VitK2 in bone health, although I did know that VitD deficiency was something to watch out for. I have today ordered some VitK2 capsules. I never much cared for fermented foods and I eat little meat, so these might well make up any shortfall.

HeronNS profile image
HeronNS in reply to HalleysComet

Yes, it is a pity we are not taught more about how to care for our bones. I guess the doctors don't learn enough at med school!

Thank you for the video. I was interested because I am so tired of being nagged by my rheumatologist to take a bone protector. I have a normal Dexa scan and already had a severe skin reaction to AA but he continues to push for the twice yearly injection. The video was clear and helpful but concerning to me in a couple of ways. I have severe GERD diagnosed with tests by my gastroenterologist and I have a polyp in my stomach and pain caused by a difficult cholecystectomy. So I am on 40 mg of PPI and have been for years. I do take gastroprotective Prednisolone. Also enough weight bearing exercise is tough because of fatigue and osteoarthritis but I try. I have been on prednisolone for six years now. The rheumatologist says I have some wedging in my spine which indicates osteoporosis. I do have degenerative spine disease. So the conundrum continues.

HeronNS profile image
HeronNS in reply to Nightingales

Unfortunately, as I've found to my concern, osteoarthritis can skew the DXA scan results. I am certainly not qualified to comment on the use of bone meds when you have existing compression or other fragility fractures, but there is no harm in doing what is safe for you of the natural methods discussed in the video Any chance of seeing a physiotherapist experienced in treating OP patients for some targeted exercises to strengthen muscles which support the spine? You should only need a couple of sessions to learn how to do them. I've done such exercises for many years, having issues with osteoarthritis in my spine.

Nightingales profile image
Nightingales in reply to HeronNS

Thanks HeronNS. I dint know that about OA and Dexascans. I will research it. I do exercises and they are good. I wish I had started them years ago and I tell my daughter and all her friends that. But getting my husband to do them for his hip. Hopeless🤣🤣

HeronNS profile image
HeronNS in reply to Nightingales

I know. Men. My husband is mooching around suffering from fatigue these days and, most conerning, starting to shuffle. I tell him to call his doctor for a full work-up, but procrastination is his middle name. 🙄

Thanks for the link. Enjoyed watching the video and it does make sense. I do most of the things suggested although I don't take a K2 supplement. Instead I drink goat's kefir which is a good source of K2 apparently. I take Vit D supplements in the form of Cod Liver Oil and a D3 2000 supplement. I take 600mg Caltrate calcium with added Vit D3. I live in Cyprus so the sunshine helps. I've just had blood tests for calcium and magnesium, both results in the high normal range. Next I'll ask for a Vit D test although my rheumy is not particularly interested in Vit D and instead concentrates on calcium supplements. He's been very helpful in certain ways but is rather 'old school'. If he's not happy to let me have a Vit D test then I'll have one done privately.

HeronNS profile image
HeronNS in reply to Pr0jection

I think the need for K2 supplements is most important in areas where it is simply no longer in the food supply because of the way animals are raised. You may be doing well in that regard!

Ken Berry makes some good points about maintaining bone health, some I'm not so sure about. He's considered controversial here in the States.

HeronNS profile image
HeronNS in reply to Reader7

Be that as it may, all on my own, with research, I ended up doing very much what he suggests and in one year improved my t-score from -2 to -1.6, much of that year on a dose of pred still above 5 mg. Considering a couple of stupid impact injuries I've had in the intervening years, but NO fractures, I am a fan of this method. It can do no harm, even if you also have to opt for a couple of years of AA in extreme cases.

Might be interesting to know why he is considered controversial. Is it because of this bone health protocol, or because of something else?

Okay, something about keto diet? As that is not in my range of interest I would not have stumbled across it.

Reader7 profile image
Reader7 in reply to HeronNS

Thanks for your reply. I also follow many of Dr. Berry's guidelines...exercise especially. My bone density is fine...so glad it worked for you also. He's also correct about the benefits of hormones, but to state that bioidenticals are somehow not as problematic as pharmaceutical hormones is questionable...I'd love to see some research on that. The controversy as Projection stated is around the ketogenic diet. Of course, there is some good research now about the benefits of keto. I did a modified version while I was on prednisone and was able to control my weight. I think anyone who is a "Youtube doctor" is set up for controversy!

HeronNS profile image
HeronNS in reply to Reader7

Yes, I remember questioning in my head his comment about the bioidentical hormones. I guess I was so pleased to find someone in the profession who was actually saying all the stuff I have been doing is good I didn't register the controversial statements, especially if they were irrelevant to me.

The depth of ignorance I encountered when doing my research was shocking. I attended a bones workshop at my hospital where patients were given presentations by four professionals. One was an overview telling us about bone structure, etc., which I found interesting. There was a dietitian, who had never heard of Vitamin K2*. The physiotherapist was great. The rheumatologist spent most of the time talking about "her" medicine (AA) and never mentioned even in passing anything about other treatments or good habits we might develop. I asked her about Vitamin K2 and she said there had been four studies, none of which showed any benefit. As by then I already knew Japanese doctors were saying if anything was a superfood, it was natto I went home and googled. Sure enough. I found four Western studies which had studied Vitamin K. They did not mention Vitamin K2. Naturally, if they were studying the wrong vitamin they would not find any benefit!

*In her defence, my daughter, then relatively newly minted dietitian, had not learned about K2 in her courses. I told her about it and referred her to the book I'd read, so at least one Canadian dietitian now knows about Vitamin K2!

Reader7 profile image
Reader7 in reply to HeronNS

Interesting... Thanks for your informative reply!

Yes, I think the controversial aspect centres around the ketogenic diet which several doctors, including a cardiologist, have slammed. However, that's also not in my range of interest, but I have cut out sugar, processed foods, eat low carbs, full fats, chicken and vegetables and some fruit, and feel much better for it. I wish I had adopted my healthy eating regime years ago!

HeronNS profile image
HeronNS in reply to Pr0jection

I practically eliminated "white carbs" from my diet early in my pred journey but continued to get carbs from root vegetables. This controlled what was apparently about to become high blood sugar (I am not diabetic). I increased my protein intake, but do not eat meat.

Thanks for posting the video. I’ve been hearing conflicting information about supplements as well as the effects of prednisone on bone density. I’m getting a bone density scan next month, which will help me know which direction to take. I appreciated his advise regarding foods and the importance of collagen. This forum is such a great resource. I appreciate you all and the platform that makes it possible.

HeronNS profile image
HeronNS in reply to Boatreading

Have you seen my story? My computer is acting up and I have trouble posting links, but if you look in the FAQ pinned post under Bone Health you'll find My Osteoporosis Journey.

Thanks for sharing the video. I appreciated his emphasis on meaningful bone. I don't think enough attention is paid to bone quality and strength not just density. I am not sure how many of you are familiar with Dr. Fishman at Columbia. He has been doing studies looking at increasing bone density with 12 yoga postures. My yoga teacher has been trained and certified by him, so I will be curious to see if there are any changes in my DEXA scan. In case you are interested here is more information: yogaforosteoporosisstudy.wo...

HeronNS profile image
HeronNS in reply to SandyBoots

It could well be helpful. I believe studies have been done showing that tai chi is good for the bones.

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