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

PMRGCAuk
9,280 members16,271 posts

My "Osteoporosis" Journey

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Books:

Kate Rheaume-Bleue, Vitamin K2 and the Calcium Paradox

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

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

Dean, Carolyn, The Magnesium Miracle (2014 edition)

Websites:

authoritynutrition.com/vita...

australianprescriber.com/ma...

betterbones.com/osteoporosis/

osteopenia3.com/Natural-Ost...

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

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

metadocs.com/pdf/pp_stronti...

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

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

79 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!

9 likes
Reply

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.

Reply

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.

1 like
Reply

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

Reply

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.

Reply

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.

Reply

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.

1 like
Reply

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

Reply

Good to know.

Reply

Not sure I fancy it though ...

1 like
Reply

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

Has your T score improved?

Thank you for the information.

1 like
Reply

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.

Reply

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

1 like
Reply

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!

4 likes
Reply

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!🌻

2 likes
Reply

What a wealth of information! Thank you.

2 likes
Reply

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

Edward

1 like
Reply

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.

2 likes
Reply

Thank you for this HeronNS .

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

1 like
Reply

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

Thanks

Reply

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

1 like
Reply

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

Hips are nearly normal.

Thanks

Best Wishes

1 like
Reply

Thank you!

2 likes
Reply

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.

1 like
Reply

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.”

1 like
Reply

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.

Reply

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?

1 like
Reply

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

1 like
Reply

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

1 like
Reply

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.

1 like
Reply

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

1 like
Reply

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.

3 likes
Reply

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!

1 like
Reply

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

2 likes
Reply

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.

1 like
Reply

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.

Reply

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.

2 likes
Reply

Just what I needed!!

Thank you,

Diane

1 like
Reply

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

1 like
Reply

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

1 like
Reply

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?

Reply

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.

1 like
Reply

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 😉

2 likes
Reply

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

1 like
Reply

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

Reply

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!

2 likes
Reply

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!

Reply

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

1 like
Reply

It just goes to show.....

Reply

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

1 like
Reply

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

1 like
Reply

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!

1 like
Reply

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.

Reply

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).

Reply

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!

Reply

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!

Reply

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?

Reply

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...

Reply

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.

Reply

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.

Reply

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

Reply

Above, in my reply to Gatorgirl385.

Reply

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?

Reply

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

Reply

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!

Reply

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.

1 like
Reply

Wow, so much good info. Thank you!

1 like
Reply

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

1 like
Reply

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

Reply

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!

1 like
Reply

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.

1 like
Reply

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

Reply

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

Reply

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

Reply

Pavlova - with raspberries ...

Reply

Yuk, I hate raspberries.

Reply

All the more for me ;)

1 like
Reply

I like strawberries though!

2 likes
Reply

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.

1 like
Reply

You may also like...