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.
Adding June 2024: Importance of Vitamin C in collagen formation. Here is an article which outlines importance of various nutrients in bone healing: healthunlocked.com/boneheal...
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. (editing belatedly in 2022: I haven't taken cod liver oil for a long time as I discovered I tend to run a high D level - an effect of (asymptomatic) sarcoidosis. Also it isn't necessary to add Vitamin A supplements if your diet contains good sources of A - by far the healthiest way to get Vitamin A.) 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!
A YOUTUBE VIDEO DESCRIBING VERY MUCH THE PROTOCOL I'VE OUTLINED, WITH ADDITION OF FACTS FROM THE PRESENTING PHYSICIAN, SUCH AS MEDICATIONS AND OTHER RISK FACTORS WHICH CAN LEAD TO BONE THINNING. HIGHLY RECOMMENDED:
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...This article is encouraging because it shows we don't always need drugs, but they do mention taking strontium citrate. Although this is probably safer than strontium ranelate (which is a manmade version so it could be patented) I personally would not recommend it. Strontium is heavier than calcium, replaces calcium in the bones. DXA readings become inaccurate. I don't know if it makes bones stronger, but I do know we need calcium for a lot of processes in our bodies.
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!
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
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:
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.
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.
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.
Prolia is a horrible drug to recommend! To say few people have problems on it is so incorrect. Although your post is from 6 yrs ago. I have been on it since 2015 and it’s a terrible drug. I wouldn’t recommend anyone get stuck on this! For anyone needing bone meds, whatever you do, steer clear of this one. IT DOES NOT BUILD BONE either! Do lots of research.
If you can find a Dr that will switch you?! I have been to several in the past year because of the side effects alone but because of the severity of my osteoporosis they will not switch me. So it’s NOT always easy to switch! Too many Drs are all about this poison and are not on board with listening to the side effects people are experiencing. I just recently have found a Rheumatologist who is willing to try me on Forteo and/or Zoledronic Acid but Medicare is refusing to pay. So now that I have found someone, I know am dealing with the appeal procedure (as of this past Friday) which my Dr stated to me that it’s not looking favorable with insurance! So yes….i may very well be stuck on Prolia!
That is different - and you are on it because you have severe osteoporosis so you need something but your medical system is less interested in medicine than their power. You can't stop Prolia or you run the risk of rebound loss of bone density with more spinal fractures unless you go on something else which is what is recommended - but the insurance is blocking that. It doesn't make Prolia a bad drug in general though. What it does show is the major flaws in your medical insurance system.
And as HeronNS says - there may be something different underlying the problem that your doctors aren't seeing.
I think one of the problems people encounter is the effect on the immune system. It must be so difficult to deal with that on top of everything else in this time when so many illnesses are running rampant.
If the medication has not been improving your bone density, has anyone run tests to find out why this is the case? It would seem to me that to be on a drug for nine years without improvement is not a good thing,
I don't know if you've joined the bone health communities on HealthUnlocked, but there has been a lot of sharing experiences with various medications there.
This is true! I have many other medical issues, prior to being diagnosed with osteo. I also have had a few spinal fractures while on Prolia. The side effects have been terrible as well but any of my drs (and those I have sought out who specialize with osteo) have told me that I will be on Prolia for life. As I stated in another post, I finally after over a year found a Rheumatologist who is willing to take me off and place me on bisphosphonates but now we have to appeal Medicare. They have denied paying for the 2 my Rheumatologist wants me to do! It’s very disheartening.
I had trouble finding your comments a few days ago. I'm so sorry to hear about the problems with insurance. It seems a bit odd because isn't Prolia one of the more expensive ones?
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 !!!
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.
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.
Everything you are doing sounds like a good idea from what I have read...everyone is different and has varying health issues...I am tiny at 66 yes old, 100 Ibs...I try to get as many vitamins as possible from the foods I eat...but these days it's not easy....I think the walking and other exercise is great...it's getting cool enough here for me to get out more and walk with my dogPattycake...
Excellent. I've been doing pretty well the past few years. No third DXA scan yet. I suppose I should have one sometime but covid and a change of GP have kind of put hold on that. I hurt my knee quite badly last year and spent many months unable to exercise as before, but getting back on track now, so hopefully not too much of a setback!
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!
My mother gave me cod liver oil and castor oil as a child...she believed they could cure most anything, I keep them in my cabinet now.
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!🌻
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.
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
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.
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.”
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.
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?
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. 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!
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'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.
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.
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!
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?
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.
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?
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.
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
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!
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.
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).
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!
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!
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.
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:
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.
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?
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!
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.
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
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!
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.
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.
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!
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.
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.
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.
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.
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!!
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."
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.
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?
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.
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.
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!
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!
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.
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!
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 ...
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.
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
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.
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.
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.
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
Well I can see where you are coming from, thanks for thinking about it. But. No, I do not take an excess of calcium, never have, and am taking less now than I did when I wrote this now rather dated post. I also have been taking Vitamin K2 which has been shown to prevent calcium deposits in places where it doesn't belong, like walls of blood vessels and in soft tissue. I do not take an excess of any supplement, in fact I take very few supplements, preferring to eat a big salad than swallow pills! I actually can't even take the recommended amount of Vitamin D because my blood level tends to run high (sarcoidosis).Everyone needs to remember that I hurt my right knee when I was running down a slope in April 2020, and that knee has never been the same since then. Prior to that moment both knees were fine. First the doctors and my physiotherapist look at my x-ray report indicating severe osteoarthritis and say the pain could be caused by OA. The same report says the arthritis in the left knee is more severe. Then in a telephone appointment with a doctor who has never seen me there is the suggestion that it could be PMR or gout (he didn't say pseudogout). It's like no one, even my usually miracle physiotherapist, is hearing me tell them, I HURT MY KNEE. And I must have caused more damage by not knowing how serious that first injury was. I acknowledged to this last doctor that the steroid treatment for PMR has definitely made my muscles weaker, and that could have contributed to my HURTING MY KNEE! So he, somewhat reluctantly, along with all the blood tests to prove gout, has also agreed to send me for an MRI and refer me to an orthopod.
When I suffered for over a year with undiagnosed PMR both my doctor and I thought my pain was caused by osteoarthritis getting much worse. And it wasn't that at all.
I know this is really long, I didn't intend to be argumentative with you, and I thought about deleting most of it, but then it occurred to me it's a pretty clear description of where I stand now so for benefit of my future self I'll leave it!
For my archives: Good suggestions all, though I think for the most part I'm ahead of you there. Ice pack every night for a few minutes before I sleep (it was more frequent earlier). Sleeping with knee elevated the appropriate amount. Walking poles especially designed to enable me to transfer weight to my arms (relatively recent acquisition). Tried a brace, no help at all. Really did myself in when my knee was much better, I got the brace and thought it would give me support I needed and had a long walk which involved on my return home a walk down a very long slope (wearing the brace, using my poles, although they were regular Nordic poles I used them for the off-loading anyway, and only carrying a light backpack) which became quite painful and I have never recovered from that trip. This must have been about a month or six weeks ago. I stupidly thought the brace was designed to stop that sort of thing from happening. Why else would I have wanted it? The knee was not noticeably swollen at that point as I'd waited for residual swelling to disappear before going for the brace fitting.
Until then every time I felt better I would start trying to walk some distance again, although I'd never tried that particular expedition (and only did it that day because my husband didn't want to drive me) and would always regret it afterwards. But I would recover in about three days. Since then I hardly walk at all, never down a slope, only the three steps I have to navigate to go in and out the back door of our building where I find a stretch of reasonably level sidewalk, use the pedal exerciser, although thinking of cutting that out for a bit, despite the need for some cardio exercise, and do my physio exercises twice a day. I will have a really good discussion with the physio when I see her on the 11th and on my list is whether I should be using some sort of pressure bandage, so thanks for the reminder. I don't want to take it on myself to do anything as I have no idea whether I might be putting something into the wrong place. I do feel there is something which is not in the right place which may be why it's not getting better this time. I felt something, like a big rubber band, slip under the skin when I was (as I was told to do) moving the knee cap back and forth, and it has been generally more painful since then. Physio may find her magic wand and fix that.
It can't take seven years to get better! I may not have that many years left in my lifespan - and definitely won't if I can never walk again!
That's great information Heron, I really don't want to have to take the drugthat will protect my bones, but at the same time afraid not to. I'll check out some of the books you've listed.
I am new on this forum. I found it very informative and valuable to read about people's experiences. I'm on the same path as you have been two years ago. I have severe osteoporosis. My rheumy insists on taking infusion one a year but I don't want to. But I am scared of not taking it. I would be very grateful if you could update us on how you are doing now. Thank you. I wish a good health 🙏
Dear HeronS thank you so much for your encouragement. I read your article last year and started to take action. I read half of my way through Lara Pizzarno's book and intend to finish one day but life has overtaken me. I do have a pedometer and try to walk a fair amount- most holidays are walking holidays etc. And I did a bit of research on Amazon of Bone supplements and based on the benefit of your own discoveries bought a bone supplement called "BoneUp" which has all of the vitamins you suggest and the calcium hydroxyapatite etc excluding vitamin A. I read reviews of this product and some were amazing. I have tailed off taking it of late because I worried about having too much calcium ( been particularly anxious this year as have been through a significant amount of trauma with my family and am by nature fairly anxious) but wondered whether it was worth going to see a bone specialist in the NHS to get some advice. Once I get things on an even keel with my parents I'd love to have the time to build a more permanent regime to ensure more consistency with the exercise. I also bought a mini trampoline to help as part of the exercise routine - to build resistance in the bones but again - of late, everything has gone out the window since Christmas with lurching from one crisis to another with my elderly parents!I would love to have the opportunity to connect more personally with you and have a chat over the phone. It is so inspiring to hear of others who are finding alternative ways to harsh drugs to defy the odds. Like you I'm in the high risk category - of slight build etc.
PS I mentioned the research in Pizzarno's book to my rheumy. You can guess what reaction I got!!!!!!
Let me know if you're up for being in touch. No pressure - completely understand if you don't want to be. Thank you. Judith x
Wow! As a newbie to osteoporosis who, following 2 weeks of Risedronate have started to feel bone pain in her femur, this is an amazing help. I never questioned the advice to start medication but now I do not intend to contine with it. Thank you so much for your advice.Frances
Hi, welcome to the site. It does depend a lot on where you are starting from. I would feel really terrible if you need medication for a while and I discouraged you from taking it. Can't remember, did you give your t-scores in your other post? I seem to remember you said osteopenia in the femur, but osteoporosis in the spine?
The most important thing for me I really believe has been taking Vitamin K2, not discounting the importance of exercise as well. Because I have arthritis in my spine I have been doing physio-prescribed exercises to strengthen muscles to support my spine for years, and I am sure that this is good for people with bone thinning too.
I'm not sure how good the links in my post are any more, but there are two books you may find really interesting: Vitamin K2 and the Calcium Paradox by Kate Rheaume-Bleue, and Strong Bones By Lara Pizzorno.
I read this post when I first came to this site a few weeks ago and I’d just like to say I found it so inspiring. I’ve been on Prolia (denosumab) for quite a few years so that can’t presently be helped 🤷♀️. However, I have followed your plan as far as I can and am now on Vits D and K2, calcium and magnesium daily, as well as eating as much fish, eggs, cheese, fruit, veg and nuts as are reasonable! Exercise is more problematic due to osteoarthritis and PMR.
But if my bone density isn’t good, it won’t be for lack of trying! Thank you again 😊
Absolutely! Just been looking up old records and in March 2013 I had severe Vitamin D deficiency - serum result 13.3 😳 At the time I knew little about it but the doc sent me for a DEXA scan which showed osteoporosis - hence I was put on Prolia as I guess an early adopter! Started on VitD and calcium then and soon scored 100+ in blood tests. Happy that I have now boosted the regime with K2 and magnesium 😊x
Thank you so much for your informative post ❤️ I'm also a sufferer of PMR and I have severe osteoporosis. My rheumy wants me off of steroids asap and she wants to put me on the infusion which is done once a year. She even didn't bother to explain what medication exactly I'm going to have and she didn't offer nor discuss with me any other treatment options.
I wonder when it will sink in to them that we do all actually want to be off pred "as soon as possible" but the PMR has the whip hand. They want to try living with untreated PMR - it isn't any fun! How severe is your otseoporosis?
If you want to know any more about management of osteoporosis go to the ROS website - they also have a very good free helpline who will talk you through all your options.
I was thinking as I read it that the jury is now out on whether Vitamin D helps or not. According to some research there is no proof either way that it does or doesn't according to Tim Spector. Low Vit D can indicate a problem eg many people with Ovarian cancer have low Vit D but prescribing Vit D doesn't necessarily solve the root cause if that makes sense. I have started taking it again because there doesn't seem to be any harm in taking it. I had a good T score on a DEXA scan less than 2 years ago but now it seems I may have have osteopenia so the DEXA isn't a foolproof test. I suspect like any health issues, especially those particularly affecting women, the answers just aren't there yet as not enough research has been done. I shall work my way through the ROS Youtube videos as they look like they give practical advice and are mainly the voices of patients. Thanks for sharing your knowledge and experience I'm so glad you had success with your regime. As I'm a bit overweight I don't need to add in a weighted vest yet. I wonder if skinny people are more likely to get osteoporosis?
Vitamin D3 is necessary for anyone who lives at latitudes where our skin can't make D year round. It works best in conjunction with other nutrients, like magnesium which, like calcium, is quite plentiful in a balanced diet, and Vitamin K2, which I bang on about all the time because the modern diet now available to most of us is depleted in that vitamin.
Of course no single nutrient is a silver bullet. Ortho advised me to add Vitamin C to the vitamins I indicated I was already taking to help with healing after recent (2024) traumatic fracture.
Here's a reply. I see on this thread that I had JUST started prednisone... 7 years ago. and here I am still on it. at 2mg. BUT I have done HEEL DROPS and tried to take the calcium VitK2 7 and d regularly..but the only Think I have been regular with is the prednisone... AND heel drops and 1 Time a week adult beginning tap classes AND my spine has improved a whopping 5 % ON THE SAME DEXA machine! hips improved maybe .05... so ALMOST back to osteopenia for spine.... Doc was very surprised. Now to add some weights. I do yoga 2x a week also. (and ice plunge..but I dont think that did anything for bones..only for my happiness and doc says for my cholesterol!!back to normal without statins. ) I am 78 years old. only prescription drug is prednisone. but take tylenol for arthritis. This site is the best!! (so glad..since it looks like I am on it forever! haha. ) cross your fingers for our election!
I remember after my second DXA scan and them dropping the recommendation for medication (which I never took) because of the improvement in bone density, my doctor exclaiming, "How did you do it!"
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