My "Osteoporosis" Journey: This is just copy and... - PMRGCAuk

PMRGCAuk

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My "Osteoporosis" Journey

HeronNS
HeronNS

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 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...

142 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!

debbiestar
debbiestar in reply to HeronNS

Thank you so much for this information. Could I ask you what you think of using organic crushed/powdered egg shells as a calcium supplement? Do you know anyone who uses it? I have access to wonderful free range eggs and am wary of 'shop' calcium supplements. I do not want to take Prolia. I am 69 and my T score is -3.1

Best Wishes to you.

PMRpro
PMRproAmbassador in reply to debbiestar

If you have a t-score of -3.1, I venture to suggest that the idea of using egg-shells is a bit late in the day. However, it is possible to use them as a supplement as I'm sure you are aware since you suggest it:

healthline.com/nutrition/eg...

But your osteoporosis is pretty advanced.

debbiestar
debbiestar in reply to PMRpro

So what should I do? Take what? Take the Prolia?

What should a 69 year old with a T score of -3.1 supplement with,

or are you saying it's down to exercise, vit D, K2 and boron plus magnesium, as HeronNS has explained. The NOH UK promotes it constantly and is not interested in any other method, natural or otherwise!!!!

In my village there are a lot of people on this Prolia and everyone appears to be OK

with it according to the Doctors.

I am confused, uncertain and unhappy and don't know which way to turn.

But thankyou for replying.

Best Wishes

HeronNS
HeronNS in reply to debbiestar

The problem with Prolia is you can't stop taking it because of the risk of rebound osteoporosis resulting in fractures. If you do stop taking it you must take another drug for some period of time, at least until the after effects of the Prolia have worn off. This is a disappointment because Prolia is very good at improving bone density but starting it may mean a lifetime commitment even if your bone density improves to the point that the doctor feels you don't need it any more.

PMRpro
PMRproAmbassador in reply to debbiestar

Speak to your doctor about the Prolia - be sure they are aware of its limitations which have really only been established in the last year or so. It does a brilliant job - but it has been found that when you stop it you need to take oral bisphosphonates for a time to avoid a rebound loss of bone density. Or you stay on the Prolia indefinitely. Few people have problems while on it - it is when you want to stop that an alternative is required. But your bone density is very low and I doubt that exercise and supplements will achieve a great deal.

I know this is a year old...what, in the end did you decide to do. My t score is -2.7 and I was on prednisone but doing the walking and "tap dancing" or heel dropping. and eating right and taking Heron's suggestions and 2 years later with the prednisone my t score IMPROVED by .001 !!!

HeronNS
HeronNS in reply to debbiestar

I don't know anything about using eggshells, but I looked them up and they are calcium carbonate, which is not the most easily absorbed form. I know you're suspicious of commercial supplements, with good reason I think. I've been taking calcium citrate for many years, ever since I hit mid life, as I understood it to be more easily absorbed. Oddly enough I was never able to find this at the pharmacy and had to buy them at a store which specialized in organic foods, etc. I think the pharmacies now carry it, but we are talking decades since I started taking calcium supplements. Since PMR I've also been taking a supplement which uses calcium hydroxyapatite as this may be the form best absorbed by people on pred. The source of this calcium is certified disease free animals raised in New Zealand.

I really think its not even the calcium which is the most important thing as we do get a fair amount through a normal, well balanced diet. It's the other micronutrients, Vitamins D and K2, magnesium, boron, and so forth. As well as weight bearing exercise which stimulates bone to be made.

PMRpro
PMRproAmbassador in reply to HeronNS

The article I linked says egg shells properly prepared are absorbed better than calcium carbonate supplements.

HeronNS
HeronNS in reply to PMRpro

Good to know.

PMRpro
PMRproAmbassador in reply to HeronNS

Not sure I fancy it though ...

debbiestar
debbiestar in reply to HeronNS

Thank you for replying. I am trying to decide what to do.

Has your T score improved?

Thank you for the information.

HeronNS
HeronNS in reply to debbiestar

My t-score improved within a year from -2 to -1.6. That was over two years ago so I have not had a DXA scan since. I think I may be allowed one late this year but they may make me wait longer.

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

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!

Hidden
Hidden

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!🌻

What a wealth of information! Thank you.

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

Edward

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.

Thank you for this HeronNS .

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

Maisie. What is PMR? Is it an american term>

Thanks

Hello debbiestar -PMR is just an abbreviation for polymyalgia rheumatica-this is the PMRGCAuk forum. Do you take prednisolone for polymyalgia rheumatica or Giant Cell Arteritis? All the best

Don't think this applies to me Maisie. I have osteoporosis in my spine. L2 L3.

Hips are nearly normal.

Thanks

Best Wishes

Thank you!

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.

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.”

PMRpro
PMRproAmbassador in reply to ConventCassie

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.

ConventCassie
ConventCassie in reply to PMRpro

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?

PMRpro
PMRproAmbassador in reply to ConventCassie

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

Jazzys
Jazzys in reply to PMRpro

MD-Diety? That is what I sometimes refer to MDs with an attitude.

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.

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

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.

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!

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

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.

HeronNS
HeronNS in reply to Stella3

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.

Dewdrop456
Dewdrop456 in reply to HeronNS

I had been taking tai chi classes for quite a while and then they clashed with work. I found some on the internet.I think it was on YouTube.They were quite good.I must go back to them but have been recovering from the dreaded Virus.

Thank you Heron for all of your advice.You have helped me so much over the last few years.Like you I prefer the natural methods.I kept picking up a weighted vest in Aldi but decided that I probably wouldn’t wear it. (It was even reduced!)I wish I had bought it.

However I walk from the Park and Ride as fast as I can to work wearing a very heavy backpack which I am hoping will build up my bone density.Most days I hit the 10,000 steps.

Best wishes and grateful thanks to you.

Dewdrop456

HeronNS
HeronNS in reply to Dewdrop456

Nice to have your update. Sounds like you are doing well - sorry you caught the dreaded virus, but on the other hand if you're making a good recovery you've got it over with, at least for a while!

I have had a lot of trouble with my knees, one seized up during lockdown because I wasn't exercising through the day, just one long walk and then sedentary, and this is apparently not the right way for an old person to live. Then I stupidly tripped over something in my home (a temporary tripping hazard of which I was quite aware but apparently have the attention span of a gnat) and hurt the other knee, so I'm definitely not getting my 10,000 steps these days. But hopefully the physio exercises will strengthen these disused muscles effectively. I'm not quite ready to try tai chi again although I'd faithfully been doing it for some months again.

And I could be wearing my weighted vest around my home couldn't I? Thanks for the reminder!

Take care, Jean

Dewdrop456
Dewdrop456 in reply to HeronNS

So sorry about your knees.My really swollen stiff knee gradually got better over a seven month period. So it was almost better by the time I had my first appointment with a Rheumatologist . I did actually say to him “ Your plan has worked, I got better whilst waiting for my appointment “!

Sometimes I too see tripping hazards and like you think “yes I know it’s there”, next minute opps!

Certainly you could wear your vest at home, that’s where I thought I would wear mine.I sometimes wear my wrist and ankle weights indoors .Do you think that might have the same affect?

Best wishes for a speedy knee recovery .

HeronNS
HeronNS in reply to Dewdrop456

I suppose anything which is adding to the weight you carry would have an effect. Only thing is once your bones are used to the weight they won't be stimulated to get denser, so you might want to stop wearing them for a while and then start over again.

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.

Just what I needed!!

Thank you,

Diane

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

HeronNS
HeronNS in reply to Jackoh

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

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?

HeronNS
HeronNS in reply to Ciar

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.

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 😉

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

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

PMRpro
PMRproAmbassador in reply to Daisychain12

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!

piglette
piglette in reply to PMRpro

I was quite amused last week to see in the telegraph that brocolli was a good source of B12! They did get some letters pointing out NO!

PMRpro
PMRproAmbassador in reply to piglette

You'd think the resident vegan would have noticed that! Would save needing Marmite ...

piglette
piglette in reply to PMRpro

It just goes to show.....

Daisychain12
Daisychain12 in reply to PMRpro

Brilliant link. Thank you. Have sent it to everyone I know. Bless you PMRpro xxxxx

Thanks for the timely information and links HeronNS. I have done quite a bit of reading so far here online I'm in the US since my results. I don't think I am inclined to go on Fosamax. When I reordered magnesium last night I added the K2 supplement. Well attempt to do all that I can without medication. Janet

What a fantastic detailed list of resources and of your personal experience. I have taken Vit D faithfully for years and potassium for about a year. I have started back on magnesium as I had been deficient in the past. I was on prednisone from about 9/13-6/16 tapering as quickly as I could. It took a long while to get from 6 to 0. Then in January of 2018 I realized it was back. I started back at 15 and decreased to zero over the next 8 months. I have been without any prednisone since then except for 5 days when my rheumatologist insisted that I go back on it for five days in February. Since then I have been dealing with PMR without drugs. I gain weight on prednisone and can't afford to do so. I'm also in a walker or a wheelchair because I need a hip replacement. I have restarted Physical Therapy to be ready for rehabilitation after my hip replacement which won't happen until at least the end of the year. I am also doing light arm weights.

Again thank you!

PMRpro
PMRproAmbassador in reply to Jazzys

Most people who cut carbs drastically don't gain weight with pred - and many are able to lose weight. I lost 35+lbs while still on over 10mg pred. I did PMR without drugs for 5 years - nothing, absolutely nothing would persuade me to do it again. It wasn't out of choice - I wasn't diagnosed.

Thank you for all the information. You say "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)" I too have sarcoidosis and may I point out the Royal Brompton Hospital webpage rbht.nhs.uk/our-services/sa... (it has a sarcoidosis clinic) which says half way down the page:

Can I take vitamins and supplements?

You should avoid taking vitamin D, as this vitamin is produced in excess by sarcoid granulomas. Unless osteoporosis is present, we normally recommend also avoiding calcium supplements, although this can be discussed on a case-by-case basis.

My vitamin D measure in normal blood test is very low but I have found that there are two different types of Vitamin D - 25 Hydroxyl (mine is very low because of sarcoidosis) and

1 25 Dihydroxy Vitamin D (has to be specially tested - mine is high).

HeronNS
HeronNS in reply to sarcoid123

My Vitamin D level went high after I started taking supplements when I was diagnosed with polymyalgia. I reduced the dose and had a couple of follow up tests and last time it was tested it was at an optimal level. When I discontinued the supplements completely the level plunged. I think in general it's a mistake to deprive people with sarcoidosis of Vitamin D completely, especially those of us who live at a latitude where we get no warm and helpful sunshine for at least half the year. Have to say I'd completely forgotten about the advice to limit calcium supplementation as well. ;)

I appreciate you comments but I find it quite enough to deal with PMR and the potential for developing osteoporosis without having to pay much attention to sarcoidosis, which I must have had since I was a young adult but largely non symptomatic. I suppose if it was affecting organs and seriously impacting my health I'd be more concerned. If it weren't for a lymph node biopsy when I was in my early thirties I'd still not even know I had it!

sarcoid123
sarcoid123 in reply to HeronNS

It could be that your sarcoidosis is no longer active as the majority of people have acute sarcoidosis and it lasts only two or three years. I have a friend in that category. I have chronic sarcoidosis which lasts for a long time!

HeronNS
HeronNS in reply to sarcoid123

I know most people with sarcoidosis are like me and don't even know. That's one reason why it's a good idea for everyone to have a Vitamin D test if they are advised to take more than the minimum daily recommendation. I was only taking 2000 IU, double my former dose on advice of my doctor when I started taking prednisone. Cutting that back to my former 1000 IU seems to have been all I needed to do. I had only asked to be tested because I had a definite diagnosis (through biopsy) of the sarcoidosis. When I was in my late teens I developed a few little cysts or bumps on my back, and these were removed. I remember the doctor who did it saying there were "changes" and my parents, medical people, being concerned and questioning him, but then everything was okay and no one ever told me what he meant. In retrospect, I wonder if that was the beginning? I later found out through a throwaway line in a report on x-ray of my spine that there was "evidence of old granulomatous disease". That was long after the lymph node biopsy. But I don't know when, if ever, this disease would have been "acute". Shouldn't I have felt unwell, or something?

Heron...thank you so much for your prompt reply and thank you for sharing your vast knowledge. As a full time carer for my ill husband I do tend to neglect my own health issues and do not find time for daily walks. I try to get a walk in but have been finding it harder to do so. I will ponder and read your references before I decide whether to accept GP's recommendation re Prolia or go my own way. I certainly will discuss issues arising with G.P...

I am curious if you’re a bone strengthening supplement that you mentioned in the text above includes strontium? I am also trying to avoid drugs and I’m tempted to take the strontium. Citrate, not ranelate. I have also made quite a few lifestyle changes. Including the supplements you mentioned as well as exercise. I am going to look into the weighted vest. My osteoporosis is all in my spine. My hips are OK.

HeronNS
HeronNS in reply to Gatorgirl385

Sounds like you are doing a lot of good things to improve your bone health. I think Vitamin K2, as well as D3 of course, and exercise are what have helped me most.

I am only taking a calcium supplement which includes other micronutrients. There is no strontium in the formula. This:

newrootsherbal.com/product/...

I currently take two doses of two capsules a day, and another dose of a calcium citrate formula. Sometimes I change the balance, or take only two doses of calcium total.

Thank you for sharing all this! Are you comfortable sharing which bone strengthening supplement you are taking?

HeronNS
HeronNS in reply to Fiddle4

Above, in my reply to Gatorgirl385.

Hidden
Hidden

Gosh this is great! I cant thank you enough. When i started on prednisone the doc asked when was last bone density scan. It was previous year and no osteoporosis. He never mentioned this could happen,but pharmacist told me to eat food richnin calcium. Im on Bone up, eat all foods rich in calcium, i had been walking everyday until hip pain started. Had one hip replaced 3 years ago due to arthritis. Maybe this one was just on its way to doing this and pred sped it up. It was just a shock. Dealing with so many health issues, this news just took me down. Oh well, just have to suck it up and accept it. Ive printed your post out and am going to do ALL of it! Cant thank you enough!

By the way, how about extreme dry eyes? Are you bothered by that?

PMRpro
PMRproAmbassador in reply to Hidden

Lots of people are - but asking a separate question will get you more responses.

HeronNS
HeronNS in reply to Hidden

I have a tendency to dry eyes, but not extreme. When I need it I use preservative-free artificial tears. Certainly better these days than in years before either PMR or pred!

pugrescue
pugrescue in reply to HeronNS

I was dx about 18 months ago with severe dry eye. Put on restasis plus needed other lubricant multiple times per day. Then developed dry mouth etc and was most of the way down the road to Sjogrens dx when GCA sideswiped it all. Shortly after starting the 50mg daily pred dry eyes improved dramatically, as did the dry mouth....such a relief there for sure. Can hardly remember to do the restasis (cyclosporin) drops 2X daily now. So since Sjogrens is autoimmune, guess the pred helps all of it. See how it goes as I taper, now at 25mg.

Wow, so much good info. Thank you!

Many thanks for recommending the Calcium paradox. Less than £2 on amazon kindle. Certainly opened my eyes. A very easy read

Hello.... I've just checked to see your latest post ....you certainly are very knowledgeable and I am sure you are helping a lot of people...we are all so confused with all this..I have agreed to take AA for a while out of fear of those vertebral fractures threatened after my four years on Prolia..I just want to add that a friend here in Greece has improved her DEXA scan results and believes that she has achieved this in part by eating two egg whites every day ..I only like the whites if I can have the yolks as well and am going now add two whole eggs five days a week.

....But if I see an improvement the endocrinologist will say it's the AA of course.... Keep up the good work for us all ..greetings from a scorching Athens.x

HeronNS
HeronNS in reply to Jennifer7

Yes, of course you must take a bridging medication if you have discontinued Prolia. No point risking the possible rebound osteoporosis. And you are also wise to be making sure you get plenty of protein. The bones need building blocks with which to strengthen themselves and protein is an important part of that picture. All the best!

PMRpro
PMRproAmbassador in reply to Jennifer7

I fail to understand how anyone could credit 2 egg whites with improving bone density! They have very little nutritional value - 22g of protein and a bit of potassium and magnesium.

HeronNS
HeronNS in reply to PMRpro

At least she said she was eating the yolks as, understandably, she doesn't like the whites without the yolks ;)

PMRpro
PMRproAmbassador in reply to HeronNS

Only one way to eat egg whites without yolks - meringues ;)

piglette
piglette in reply to PMRpro

Yum yum, with a little bit of vinegar to make them slightly chewy.

PMRpro
PMRproAmbassador in reply to piglette

Pavlova - with raspberries ...

piglette
piglette in reply to PMRpro

Yuk, I hate raspberries.

PMRpro
PMRproAmbassador in reply to piglette

All the more for me ;)

piglette
piglette in reply to PMRpro

I like strawberries though!

HeronNS
HeronNS in reply to PMRpro

My father's cousin had a neighbour with a cat who was fed egg yolks. Said cousin used to get many of the leftover whites and made little meringues she called "kleenex" 😆 They were good! I didn't get them often as she lived in New York.

This is great information. Thank you for sharing.

WOW! Thanks! This is more help than I could have hoped for. I just took pictures of my weighted vest and ankle weights to try and sell on Craigslist. Think I will scrap that idea and start using them myself. Lots of good information in your words. I'll print them out to follow up with. What a treasure!

thanks so much, lots of information

Heron, I’ve been reading your posts for years since I broke my ankle 12 years ago and instinct prompted me to drive past the pharmacy and ignore the drug prescription! I’ve been following the natural route since, albeit at times supplementing periodically, and I’ve always loved physical exercise so walking, dancing, aqua aerobics, hill walking and Pilates are “my thing” and I’ve had no fractures since. As you would know many times over those early years I worried if I was doing the right thing as there was so little support. Now in my mid 60’s I’m taking it a bit more seriously and supplementing in a similar way to yourself. I feel now I’d like to add in a calcium supplement in a natural form and am considering a seaweed supplement being natural and which includes, in small amounts, lots of the necessary minerals for bone health including trace amounts of strontium. (We don’t access your calcium supplement in the UK/Ireland). I’m not talking Algaecal here but there are similar organic supplements available now. I’d love to know if you or anyone else has thought about this or supplemented with it although at this stage I’ve decided to go this route but I’d be grateful for comments. It’s been great to find this run of posts. Thank you all very much.

PMRpro
PMRproAmbassador in reply to Jessie1234

Heron will reply to you later - Canada starts the day a bit later! But I'd suggest you repost your comment as a new thread because very few people will see it here - it is an old thread and only people who followed then will see your reply now.

It is too interesting to be missed,

Jessie1234
Jessie1234 in reply to PMRpro

Thank you PMR. I've searched this section of Health Unlocked for any posts on this topic but didn't find any so I'll take your advice and do it shortly.

HeronNS
HeronNS in reply to Jessie1234

I'm afraid I don't know anything about the algaecal family of supplements. For a while I did take a supplement which was being produced locally and claimed to have been studied by the university and had all kinds of good things in it, but it became inconveneint for me to obtain it, plus I never found the research the seller referred to, so gave it up. But I'm thinking it probably is a very good source of some nutrients. However I've also read that along with good things it can have a higher level of lead than we should get, so it's worth doing a bit of reading before taking anything which hasn't been given the seal of approval by the relevant health agency.

Jessie1234
Jessie1234 in reply to HeronNS

Algaecal has published recent, reputable scientific research on their products (at least I think it is) which is worth reading as their products give a good boost to bone improvement. Of course the one which is recommended to be taken alongside a separate strontium supplement would do so but I'm impressed by the results of the stand alone seaweed Supplement. There are now a few much better value European Organic Seaweed supplements available. They are not from the same type of seaweed but I compared the nutrients in 3 different products and they were very similar. I have read about the worry about the amount of lead but there was an assurance somewhere that it was minimal. I'll check it out again. I'm a bit wary of naming products so please correct me if necessary!!

HeronNS
HeronNS in reply to Jessie1234

Thanks for info!

PMRpro
PMRproAmbassador in reply to Jessie1234

Hmmm - WHO says it is reputable? They aren't going to publish the other stuff are they? Not saying it isn't useful - but it is impossible to say how independent that work is. Research has found that studies are more likely to find a positive result when funded by the company involved.

"This study was funded by a grant from AlgaeCal Inc., Vancouver, British Columbia, Canada."

HeronNS
HeronNS in reply to Jessie1234

I knew I'd read something recently:

consumerlab.com/answers/are...

Then it struck me.....sure you could just add seaweed to your diet (bit hard to incorporate daily!) Anyway, a warning on some sites was to be wary of heavy metals in seaweed but also claimed that organic seaweed limited this. I sometimes put kombu in when making stock for bone broth and I’ve started to shake seaweed flakes on top of mashed advocado on toast. It’s tasty.

HeronNS
HeronNS in reply to Jessie1234

Is there any seaweed which isn't organic? I'd suspect wild sourced sea plants might even be worse because you have no idea what's washing around in the local ocean. Like anything, be careful. Years ago the swordfish market was wrecked because a woman ate swordfish every day for a couple of years and gave herself mercury poisoning. No one was going to suffer from eating swordfish a couple of times a year, but I have seldom seen swordfish since. Same with seaweed. A daily supplement containing too much lead wouldn't be a great idea, but the occasional salad with seaweed as an ingredient or garnish would be fine.

What's in the seaweed used in sushi? Is that a farmed seaweed?

PMRpro
PMRproAmbassador in reply to HeronNS

Swordfish is all here! Didn't lose its popularity in Italy ...

HeronNS
HeronNS in reply to PMRpro

Never see it here any more. Maybe we're shipping it all to Europe!

piglette
piglette in reply to HeronNS

Laverbread is still alive and kicking in Wales, made from seaweed. You can have it for breakfast, lunch or dinner.

HeronNS
HeronNS in reply to piglette

I've never heard of it. Long way to go! I've enjoyed hana tsunomata and samphire in my time. In the Canadian Maritimes there is a disgusting snack called dulse.

piglette
piglette in reply to HeronNS

Laverbread is moist and you can get it canned. People fry it for breakfast with bacon and you can even use it to stuff ravioli. This us what Wikipedia says:

Laverbread (/ˈlɑːvərbrɛd/) is a food product, made from an edible seaweed (littoral alga), consumed mainly in Wales as part of local traditional cuisine. The seaweed is commonly found around the west coast of Great Britain and east coast of Ireland along the Irish Sea, where it is known as slake. It is smooth in texture and forms delicate, sheetlike thalli, often clinging to rocks. The principal variety is Porphyra umbilicalis. Porphyra (laver seaweed) is classified as red algae; it tends to be a brownish colour, but boils down to a dark green pulp when prepared. Laver seaweed has a high content of dietary minerals, particularly iodine and iron. The high iodine content gives the seaweed a distinctive flavour in common with olives and oysters.

Laver seaweed has been cultivated as a food since at least the 17th century. It is prepared by washing repeatedly and then boiled until it becomes a soft mush when it is known as laverbread. The gelatinous paste that results can then be sold as it is, or rolled in oatmeal; it is sometimes coated with oatmeal prior to frying. Laverbread is traditionally eaten fried with bacon and cockles as part of a Welsh breakfast, or with hog's pudding in the south west of England.

HeronNS
HeronNS in reply to piglette

I have to say reading the word gelatinous made me cringe....

piglette
piglette in reply to HeronNS

I don’t know why they used gelatinous as I don’t think I would have said that. Oh well, perhaps one day you can try it.

HeronNS
HeronNS in reply to piglette

I wouldn't mind visiting Wales again. It's been a very long time.

piglette
piglette in reply to HeronNS

croeso i cymru!!

PMRpro
PMRproAmbassador in reply to piglette

It'll be the texture of the paste - some are dry, some are sticky, some jelly-like. It is seaweed that is used to produce vegan/veggie gelatin.

HeronNS
HeronNS in reply to PMRpro

Agar?

PMRpro
PMRproAmbassador in reply to HeronNS

Carageen I think

HeronNS
HeronNS in reply to PMRpro

Carageenan from red algae. The things you learn from the forum :D

PMRpro
PMRproAmbassador in reply to HeronNS

Hehe - I often sit wondering "Why do I even KNOW that???????"

Hidden
Hidden in reply to PMRpro

For some reason it make me think of Ireland. Is it Irish seaweed. 🤔🙄

PMRpro
PMRproAmbassador in reply to Hidden

Another name is Irish moss - but carageen obviously comes from the Gaelic Carraigin

Hidden
Hidden in reply to PMRpro

IT must have stuck I my brain at some point. Ta

PMRpro
PMRproAmbassador in reply to Hidden

"This particular type of seaweed is

common in the Atlantic Ocean near Britain, Europe

and North America. When used in food products,

carrageenan has the EU additive E-number E407

or E407a. E407a has a slightly different composition; moreover, it contains a considerable amount

of cellulose. Carrageenan has no nutritional value

and is used in food preparation for its gelling, thickening, and emulsifying properties (Van de Velde

et al. 2002) and in pharmaceutical applications,,,"

piglette
piglette in reply to PMRpro

Having eaten it, it is rather like cooked spinach whatever texture that is!

HeronNS
HeronNS in reply to piglette

Totally off topic but on this ancient thread I doubt it matters: a true story from my early childhood. My mother told me, as she gave me some spinach, that I probably wouldn't like it as most children don't. Being the contrary individual that I am I promptly decided I would like it. I would have been three at the time. Later, when I was living with my aunt, I told her I liked spinach. For some reason there used to be babyfood spinach (no wonder small children hated spinach if that was their first intro). And there was a baby in the household so she had some, and put some on my plate. All I can remember is it was so thoroughly disgusting I could not eat it. Because I had claimed to like spinach I was told that I had to eat it and could do nothing else until I had. I was shut in a bedroom with my dinner plate. After some time had elapsed a lighbulb switched on and I scraped the offending slimy muck out the window and called my aunt to say it was gone. She came in, praised me, and I was set free. Guilt about the lie still remained until some years ago when during a visit I confessed. But of course she had no memory of the incident! 😀

And, yes, I do like spinach, just not the revolting slime which was presented to babies in the 1950s!

piglette
piglette in reply to HeronNS

I love spinach, but I did not have it forced on me as a child thank goodness, it was beetroot in my case. I would have thought that experience could have harmed you for life. Lucky no one found the evidence thrown out of the window!

HeronNS
HeronNS in reply to piglette

Probably got eaten by some critter or other right away. This was in Kenya. :D

And I totally loved beetroot, but not the pickled kind I was given when I came to Canada.

piglette
piglette in reply to HeronNS

I love the pickled kind it was the ordinary boiled kind. We used to have it with white sauce at school and I used to swallow it whole as we had to eat it. Yughhh. I still have not got over the trauma.

HeronNS
HeronNS in reply to piglette

Beets with white sauce? Bleah. For some reason that puts me in mind of the evening my father put milk into my Ribena. Fortunately he saw his error and threw it out!

piglette
piglette in reply to HeronNS

I don’t know which is worse beetroot and white sauce or milk in Ribena!

HeronNS
HeronNS in reply to piglette

I didn't actually get to taste it. It curdled nastily and was taken away from me before I drank any.

piglette
piglette in reply to HeronNS

The thought is bad enough!

PMRpro
PMRproAmbassador in reply to piglette

I love spinach - very popular in the Germanic countries, with a dollop of cream, yum! But the texture is important - some are like UK baby spinach but some have enough texture to enjoy.

Surely beetroot and white sauce doesn't work - must be pink sauce ...

Constance13
Constance13 in reply to PMRpro

Ha ha (Heringsalat)?

PMRpro
PMRproAmbassador in reply to Constance13

Of course! Yum - hate Hering as the fish but do like Heringssalat. Can be VERY pink

chefkoch.de/rs/s0/heringssa...

Constance13
Constance13 in reply to PMRpro

Missed an 's'!!

piglette
piglette in reply to PMRpro

I love Gurkensalat yum yum. My school put me off beetroot for life though. The beetroot was very woody as well as the lumpy white sauce. My great aunt when she was living in East Germany was allowed out when she was 65 and she would come to Berlin and sit and stuff herself full of Gurkensalat and tangerines.

Hi, can you share the name of the bone strengthening supplement from your local organic foods store ?

Thank you for all of the other information

HeronNS
HeronNS in reply to KeithMoon

I live in Canada. It's called Strong Bones by New Roots based in Vancouver. But it's really just a fancy multivitamin. Capsules, not tablets.

Thank you very much. I am looking at everything and anything that will help to keep me from going back on Prolia. I have osteoporosis caused by too many years of prednisone for Crohn's disease. My latest t score is -3.4 and that kind of scares me a little. To say the least.

I need to read through your original post again and check out the links you posted

HeronNS
HeronNS in reply to KeithMoon

If you find "dead" links, please let me know. I'm afraid I've been a bit lazy and not checked for a long time.

Also, are you taking bone medication to prevent the rebound osteoporosis from discontinuing prolia?

KeithMoon
KeithMoon in reply to HeronNS

I am not. I am supposed to start on Fortreo as soon as the insurance nonsense gets worked out. I was on Prolia for several years, but had to stop the injections over a year ago.

HeronNS
HeronNS in reply to KeithMoon

Oh not good. But the thing is, if you've been okay so far you may not be in as much danger as someone who hadn't been on Prolia for so long. I wish I knew more about it. In the meantime you are very wise to be proactive about the natural stuff - everyone should do that anyway, meds or no meds.

PMRpro
PMRproAmbassador in reply to KeithMoon

It may not have been the pred alone that caused the problem - Crohn's itself affects BMD in young people so they start at a low level anyway,

KeithMoon
KeithMoon in reply to PMRpro

I wish I could say I was "young people", but I'm quite a bit older than that

PMRpro
PMRproAmbassador in reply to KeithMoon

No, not now, but you had Crohns as a young person, the bone density didn't develop to the level it should have - at the age of 30 you should achieve the peak bone density.

KeithMoon
KeithMoon in reply to PMRpro

Okay, got it.

Thank you, I have found it today and copied the content into a word document. Thank you for taking time to do such an exhaustive report on your experience. Vx

I love this! Such positivity and hope.

NB. Calcium just should be avoided at the same time of day as Prednisalone not altogether whilst on Pred.

Thanks Heron NS!

Thanks for clarifying that!

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