Strong Bones Support Group (2)

Hi Jill,yes I think finding out the cause of each persons OP or at least identifying risk factors is pretty crucial to finding the correct plan of action for improvement or at least slowing the process instead of just handing out Alendronate. Perhaps the information wasn't available 20 years ago .. At least they are looking for things now...

Hello Jill,

I have a book from 2008 which defines Primary Osteoporosis as Ideopathic and is believed to be cause by no specific identifiable cause or simply by age-related bone loss.

I believe that it's just that they don't know the reason for it.

Any other reason for Osteoporosis is referred to as Secondary and I really don't think that any of this serves any useful purpose at all!

By these definitions, if your Dr. didn't really know what caused it, it probably should have been labrlled Primary.

Just my opinion.

Health to your bones

Colin

Hi Jill

​I too have been told they do not know what caused my OP but are assuming it was the high doses of steroids I was given as a child for my asthma (which apparently is not done these days as they now know!), but that is why I have been asked to be referred to a Rheumatologist as I agree, it helps to know the cause.  I might have a long wait as had a letter thru on Sat saying it could be 3 months before I get an appointment thru, which I must admit I kind of figured would probably be the case, hence me doing what I can to help myself prior.  

​My thyroid was also tested and I was not it was normal and was not the cause lol

​kind regards Carrie

Hi Colin

​What is the difference between primary and secondary please?

Thanks! :D

​kind regards Carrie

Hello Patty, It's me again. Just read your post and totally agree. If you read my previous post to Jean you will see that I believe that I have now identified the basic cause of my osteopenia / osteoporosis combination and sorting that out is "crucial etc as you have said. I think my involvement with AA is really at an end and unfortunately I ought to go see the GP regarding doing something about it. I don't trust them though and they are likely to go off at a tangent and act like total plonkers. I do have an interim plan which whilst not perfect will possibly work. The hrt gel that I use is a fixed size 5ml application but I can use two applications one day and then leave two days of normal level and then do double again. This will give me a 33% increase on average. I will have to watch that my butch agression doesn't increase at the same time.(lol) The application is easy, just one in the morning and another at bedtime on the double day. Unfortunately I shall have difficulty telling if it works without a blood test some way down the line. I need to talk to my friendly locum. If the cause is removed then the proposed solution is much more likeky to succeed. Hope is burning brighter than ever.

Reading furiously.

Take care

Kindest regards

Colin.

Hi Carrie

As far as I can tell there is no real difference - It's Osteo-whatever and as I mentioned in my previous post, it seems only to be a way of categorizing things for future statistical analysis. I shall do a little more research to confirm what this book says (I have three more books on the way, I don't actually fully trust any of them).

Those instances categorized as secondary possibly have more chance of having the cause sorted out because if it's ideopathic or just age related then it's difficult to remove the cause, all you can do is neutralise and overcome this cause, whereas if you have a definite cause then that can usually be worked upon unless it was in the past and is no longer being the cause. I think that makes sense but I'll check up on it.

Take Care

Kindest regards

Colin.

Try pages 52 - 54, they seem to confirm in more detail what I have written above.

Bye

Colin

It was labeled idiopathic.  Today I got word that all of the blood results for thryoid have come back in the normal range.  

I ought to be glad that they were within normal range, but somehow I'm also desiring a cause so we can treat it (apart from OP meds!)!!!  I did have the ultrasound for the Thyroid today also.....so that will show if there are any nodules or whatever..... .

This dr is wanting me to start Prolia, and I was hoping to have a good argument as to why NOT to do that....  treating thryoid problems.....  At any rate, now I will say, "lets give a chance for the HRT therapy to support my bones as well as getting to the root of stomach issues which should help absorption."  AND, another reason being that even though my bones are going backwards, I'm still in Osteopenia stage......    

Oh hum.........

 

It was labeled idiopathic... meaning 24 years ago.  This new dr. called it "secondary".....  just clarifying what I meant when I through that idiopathic word out there.  I think i'm talking in circles tonight.  SORRY!  

Hello Jill,

I believe that the medical profession refers to anything about which they know nothing, as idiopathic, it's just another name that sounds good!

Please do check up on the prolia, it seems to have many of the same side effects as AA and is not recommended for osteopenia but is recommended if you are in the high risk of fracture category. Also watch out for the necrosis of the jaw, that's another of the things that put me off AA.

Sorry to be a bit negative but I really believe that the last resort things are now being used far too early in an attempt to get people off the books. The long term effects don't seem to bother the Drs any more.

That was today's rant.

The HRT route is significantly safer and is quite probably nearer to the true cause of the OP than any of the other suggested causes since it is not the easiest of things to diagnose reliably. The choice is obviously in your hands and really all that I would suggest is that unlike me, you don't rush into taking medication that you may later regret. But in the meantime it's a good thing to be extremely wary and careful of falling or taking part in activities that put undue stress on bones that could break.

I have chosen the diet and exercise route and had my first go at soaked Chia seeds with my bowl of nuts, seeds and puffed oats this morning. I am assured by Pauline (my wife) that these are miracle seeds so here's hoping.

Take good care of your bones

Kindest regards

Colin.

Hi Colin Carrie et al, 

my thinking thus far is ;in a ' normal'  healthy body environment bone is a living tissue that constantly repairs itself and this process is believed to slows down as we age. 

Our dexa scan t scores measures the variance between our bones and that of a young adult baseline scores of -1-2.5 suggest ostopenia and Below -2.5 osteoporosis for each -1 in t score there is a 3 times risk of  increased fracture of the hip and 2.5 times increased risk of fracture in the spine. The risk is measured against that of a young adult remember.

 Z score on the dexa scan is the variance  between your score and those of the same size,age, and gender.An unusually high or low score indicates the need for further investigation to see what is causing your bones to age faster than would be expected for your age.

on this basis ageing is the main cause or Primary cause and other variables are the secondary cause.Treatments be they healthy choices or medication choices are then targeted to each individual to reduce the effects on bone health as we age.

For example under normal circumstances calcium and vit D ( and as we've found out K2) ensures absorption and retention of calcium into the bones however if you are deficient in the above your body will absorb calcium from your bone tissue to keep other organs in the body working. It's a constant interplay ! other secondary causes that effect our bone tissue  include thyroid problems, bowel problems, menapause and diabeties (or long term sugar rich diet) to name but a few. By keeping these other factors under control there is every reason to be hopeful that you can build bone that constantly repairs itself.🤗🤗🤗😃

Hi Patty et al

That is very succinctly put and it seems to be the current thinking, certainly by me and many others.

Because of my previous encounter with calcium as an artery blocker if it isn't properly deseminated in the body, I didn't take the two a day calcium tablets prescribed but cut it down to one. I also didn't get enough vitamin D2 just to compound things. This exacerbated my bone problems of which I was only a little aware at that time. I also didn't know about how essential zinc, copper and particularly, vitamin K2 are, to name but a few other essentials. Apparently there is a list of 20 of these essential items but finding the list is not easy. It seems to be buried inside a lot of other discussion and I only have the list of eighteen at the moment. There is a video which shows the list but it's gone in a flash so I'll have to rerun and pause and compare. Meant to do this previously but gardening and exercise intervened and distracted me and I forgot. Have just made a note to self!

The balance thing is incredibly important and I believe that the Acid / Alkaline balance is equally important, maybe not on an instant by instant measure but certainly on an average basis. I haven't seen any evidence to the contrary other than the ravings of an entertainer who had just picked on controvercial bits to portray a warped picture.

Taking your last paragraph literally, I believe that I am now on the way down that rebuilding bone pathway. Unfortunately I still don't have a very clear idea of how 5 months on AA will make a difference as I'm sure it will. Can't change that and will just put it dowm to experience and hope that it doesn't interfere with the bone rebuilding too much and also hope that I can outlive the AA half-life.

Apologies for going on a bit but you hit the nail dead square on its round head several times and the rest just pours out of me!

It's just a little odd that rarely do we find anyone who just has a simple thing like OP wrong with them. I've taken to looking for links nowadays and it's quite surprising how many there are.

Shopping time!

Kindest regards, have a good day

Colin.

Thanks Colin, It's amazing how our body tries to  balance everything out and there we are having to read everything first before we can correct our unknowingly bad habits! The skeleton is like a parent, constantly working in the background trying to keep the peace between organs, doesn't interfere too much with petty squabbles and gives unconditionally when needed. Well time to give this parent a little love back haha😍 

It is interesting that my husband has the bones of a 30 year old at nearly 74.

Nothing can explain it. I have a sister with osteoporosis as well as diabetes like me. Her osteoporosis is not as bad although she is four years older. 

Genetics may explain it somewhat.

 

Necrosis of the jaw is not an issue until three years after commencement of the drugs. 

I think if you know you will need teeth out at some point the risk is real but three years away.

You can check the safety of it too via a blood test but if you need a tooth out it would be of little comfort once past the three year mark.

I would definitely come off the drugs at three years if I needed teeth extracted.

 

Hi Kathleen

At least somewhere along the route, the links eventually worked. I did post them in various places where I thought that you may get notifications and I noticed that others were trying to help as well.

Welcome to the continuation, at least, I hope that it will be a continuation. I enjoy reading the posts and participating in some of the discussions although with so much information to be digested I'm tending to almost use the discussions as a relaxation and to get my misconceptions put right.

Your husband is obviously doing everything right and whilst I envy his bones, I also realise that if I had been like that I would not have come across so many interesting people and I still like helping whenever I can.

Take good care of your bones

Kindest Regards

Colin.

I think Bill has just been lucky. There are many others who are more active and diet was better all their lives who have had the misfortune to find themselves with osteoporosis. Men do not get it anywhere near as much as women so that is a big factor as well. He is dairy free now too because of an intolerance but his soy milk is fortified with calcium.

Bovine Dairy is one of my intolerances along with various others but I soon got used to managing without. I use a rice or coconut milk, also fortified and I now mix some with Chia seeds which are an incredible superfood, so I'm trying to turn the clock back a bit after many years of food abuse. It's a sort of half-hearted better late than never.

Bill must have some good genes, I'm hoping that I have some of my mothers, she was days off being 103 when she gave up, mainly through becoming immobile and having to be in a care home. At that rate I should still have 32 years to go!

If information had been as plentiful years ago, I also might have escaped the problem. Whether that would have good remains a mystery.

Got to go and pick up wife and daughter from shopping.

Will chat again soon

Bye for now

Colin

Look into strontium citrate as a possible adjunct to other nutritional supplementaton and appropriate exercise.  Strontium citrate is a natural form of the element, unlike ranelate, which should also be steered clear of.  I'm sure there are contraindications, there always are, but so far to me it looks like a much safer treatment than any of the patented medicines for OP.  Bio-identical HRT is also supposed to be safe, unlike the HRT derived from pregnant mares!

Hi Handbrake, Colin, Jean and everyone,

​Really interesting reading above and summarised well.  I will respond more fully tomorow when I am able, but makes me even more determined to fight on !

​kind regards Carrie

Hi Jean

​What you have listed I have on my list to ask my Rheumatologist whom I see in July (first available appt! lol) ie the strontium.

​kind regards Carrie

Hi Colin,

​Unfortunately my GP reckons it was all the steroids (prednisalone) I was given as a child   but that is why I want to see the Rheumatologist for more information and to see if that is indeed the possible cause.  I don't think I can do much more right now apart from trying to improve my diet and exercise and of course gaining as much information as possible from everyone here, and reading the book

​kindest regards Carrie

It will be interesting to hear what he/she has to say.  I understand that strontium is among the essential minerals we should consume.  I just don't know how much becomes too much, because strontium could actually displace calcium in the bones.  But I read something recently that sounds like strontium citrate can be taken and it's like a lot of the other micronutrients and improves healthy bone remodelling.  So who knows?

Hi Jean,

​Yes indeed it will.  Interesting that strontium is among one of the essential minerals we should be taking, I must add that to my notes to take along. 

Shame there is no magic wand to wave for us all huh

​Have a good eve

​kind regards Carrie

Hello Carrie

Nice to hear from you. I guess you must be rather disappointed to get that diagnosis. It's sometimes easier to get non-committal diagnoses and then you can manipulate the words to suit yourself. Any information I can help you with and you only have to let me know and I'll try to get an answer for you.

I've had quite a busy day sorting links out for Kathleen and answering questions here and there. I think that I must be extremely nosey (have a very enquiring mind), I do seem to poke my oar in all over the place. I need to pull in my horns so that I can get on with the reading.

Tried the chia seeds, 2 tblsp coconut milk, 1 tblsp seeds & soak overnight in cereal bowl, then add rest of cereals, nuts, seeds & milk. The seeds are a bit like small grey frogspawn but smaller and tasteless and extremely good for you. It's probably better not observed while you're eating it. It didn't bother me, I've had much worse looking things.

It was a fairly quiet day today, couldn't go far cos acting as taxi man for wife & daughter. Found time to watch the first Deep Space 9 intro DVD which I only just found out I hadn't watched. I've only had it 10 years!.

I'm burbling again, You see, I can distract myself easily. I sleep a lot better after I've unloaded my brain a little. Sorry about that. Hope that tomorrow is a better day for you. Tomorrow will be a better day for Eileen.

Thinking of you

Good Reading.

Kindest Regards

Colin

Colin,

Is it necessary to soak the seeds??  I have some and have been adding them here and there to salads and smoothies.  I don't have any plans of taking the Prolia, although I am curious to see if the dr's office calls me to come in to do that.  I really want to see the dr. again, and tell her "no" in person, before I get that call that they are ready for me to come do that.  I don't see her again for another month.  

I've been known recently to run from doctors when they tell me something I don't want to hear....  It seems the medicine route is ALL they do!!!!  I have been on the AA's YEARS ago... and have jaw problems already.  I have no idea if those drugs caused it all or not.  I don't have necrosis, but I have TMJ and have spent thousands on my jaw.  

I am HAPPY with all the other things the dr. has set up for me to do, and the path she has me on.  She's the one who has set me up with nutritionists who have a "functional medicine" mindset.  All I read about functional medicine, I like.  I'm anxious to see them... in two weeks.  I have already adjusted a lot in my eating habits over the last few years...  getting more narrowed down all the time....  

I have a bone supplement I just started that has several of those nutrients mentioned above.  I've been on D3 for many years now.  

that's all for now!

Jill

Hi Colin,

​That is why I wanted further information; I wanted to see if the steroids were indeed to blame, or whether it was my diet or lack of important exercise or what.  Hopefully as things become clearer in my mind I will know what to concentrate on

​Thank you with regards to information - all will be appreciated, you are very kind, thank you 

​:D re the chia seeds; I have still not obtained any yet!!  I am uncertain with coconut oil/milk as it is high in salicylic acid so am sticking with the turmeric mixture for now - to help with pain even though my youngest nephew thinks it looks absolutely vile!!!  I know coconuts are supposed to be SO good for one, and I will probably reintroduce at some point into my diet.

​With regards to answering ppl's queries, it is fab you have the time to do so, please dont't stop!  An enquiring mind is a learning mind ...think one of my late parents gave me that advice! lol  I try to take it on board myself as much as I can.

Well done on being the taxi service   Very important!!

​I have a few bits I need to catch up with today but hopefully will get back on here tomorrow

​kindest regards Carrie

 

Sorry to put my oar in here - I find I am intolerant to a lot of dairy and have switched to soya milk which is really nice  

Will have to try some rice milk sometime as don't think ever tasted

​kind regards Carrie

My husband has Vitasoy which is also calcium enriched and he likes this brand the best.

Hi Kathleen

​Not tried that make; will have to look out for it to try

I have been using Alpro which seems fairly easy to get hold of!

​kind regards Carrie

We are in Australia so I guess different brands are sold in different countries. 

Hi Colin,

You will be a font of knowledge with all those books :D 

What you say makes sense, thanks

kind regards Carrie

Hi Carrie,

Hope that the links were useful, I have also posted the strontium paper. It may take a while to process all that information.

The coconut milk from a well known supermaket has never seen a coconut, it is just flavoured to taste like coconut and is just another non-dairy milk substitue that I can use without problems. I dont know about the salicylic acid, probably best to be very cautious. Mentioned to Pauline about turmeric and she commented like your nephew! the soaked chia seeds fall into the same category: look awful, slimy jelly, but taste of nothing and are easily stirred into the rest of the cereal without any problems. If they do all that's claimed - High in omega-3 fatty acids so good for cholesterol; high in calcium and magnesium which promote healthy bones and teeth, also high in iron, folate and soluble fibre and promote a healthy gut. Can also be used as a thickening agent in soups and stews. Various other things as well.

If I keep on with all these super-foods, how long before I become Superman? ( lol).

Pauline bought me another book yesterday - Healing Foods, Eat your way to a healthier life. I like the sentiments but shall be verrry careful.

Been to the gym this morning and more of the same but it's getting easier except that I regularly lose count and end up doing more than I intended. I've still got the skipping to do this afternoon. It's cold here so I think a little wood chopping and fire-lighting is in order.

Talk again sometime.

Take good care of yourself

Kindest Regards

Colin.

Jill, my feeling is that if you have pre-existing jaw issues you would not be offered drugs that could affect the jaw.  If a doctor did, assuming they know your problem, I would consider them incompetent.  Please note it's not just the bisphosphonates that can cause problems.  I believe denosumab is also suspect and the longer it is on the market the more reports there are. 

Hi Jill, thanks for the information.

My mother would have commented about you having your head screwed on the right way. You need as much information on prolia as you can handle. That makes it difficult for the medical profession to browbeat you into submission. My experience is that they don't like knowledge being forced on them and they have been known to write nasty little notes to each other about who does he think he is? (That was about me and statins).

Regarding the seeds, it isn't necessary to soak them but it just maximises the amount of nutrient that you can get out of them and stops them passing through undigested. They tend to be a bit jellified when soaked but still tasteless and can still be easily stirred into things. Some attributes are listed in my post to Carrie.

Can you message me the details of the supplement that you are using. Most of my nutrients are individual and it's reaching the silly stage - A plate of pills for breakfast. Tried to get the ones mentioned in 'The Book' but they couldn't guarantee that they were ok for males because they aim at a female market. It's time that they widened their outlook!

The functional medicine mindset is not something that I have encountered before, even in the healthfood shops. I feel a research urge coming on after a quick note to self. It's like being back at school only better because the teachers never knew very much. (1950s).

Have run out of steam and have a fire to light before Pauline gets home

Talk again soon

Kindest Regards

Colin.

The moderators have got my reply, possibly because I mentioned the 'S' word.

We'll see how long it takes them to release it if at all!

Hi Colin,

​Yes thank you for the links, and I have messaged you re the strontium which I will add to my file

​Chia seeds are still on my shopping list to obtain, but from the sounds of it are going to be something good to get hold of if they are so nutritional.

​Ahh I see re the coconut milk   Again, worth my while looking into though I am enjoying the soya milk I use.  It is nice to have an alternative though

​:D re Pauline's reaction to the turmeric!  However, I will say this, it does indeed seem to be helping the pain.  I stopped it, to see, and my pain increased.  I restarted 1/4 teaspoon of the mixture twice a day (swallowed with copious amounts of soya milk to take away the taste!!), and my pain has decreased.  So interestingly I do think it does indeed have a natural property for easing pain and inflammation   I can message you the golden paste recipe if Pauline would like to try! lol  Else just sprinkling some natural turmeric into food (the taste not so noticeable then) is also supposed to be beneficial.

​:D re Superman!   lol.....be interesting what the book Pauline bought you imparts, but as you say, you need to be careful weighing it up with everything else you are taking.

Well done on the exercise

I have been a little lax today but blame tiredness and it being so much chillier!!!  Will try and do better tomorrow lol

You and Pauline take care too,

​kindest regards Carrie

​

Meant to add I have started trying to include green lentils and pearl barley in cooking some casseroles etc as supposed to be beneficial

Hi Kathleen,

Yes of course

​kind regards Carrie

I do use pearl barley as it cooks well and is lovely in soups.

I cannot have seeds though because I have diverticula. 

I think just trying to add some of the things on some days has to be a big plus.

Same with the vitamins and minerals otherwise we would be eating and swallowing all day lol.

Anything we do to improve our bones must be a plus.

Same with exercise.

Colin,

YES, read up on functional medicine!!!  I'm IMPRESSED.  Only problem is they are few and far inbetween.  And other problem is...  $$$$$$$$$.  Well, maybe not $$$$$$$, but $$$.  Smiles.  

Jill

 

Hi Jill

I found an institue that runs free courses and have begun reading some quite useful pages. It seems that one of my moans is embedded within the ideology of functional medicine, and that is that a systems approach is the only sensible way to look at most ailments that are not actually caused by a virus, bacterium or microbe.. There is a free course which introduces some of the concepts embodied in functional medicine and I've signed up to have a look. I'm not certain where I'll find the time!

Thanks for the info Jill.

Kindest Regards

Colin

 

Hi Kathleen,

​It is a useful storecupboard addition indeed, the pearl barley

​Seeds can be an issue.  Get between my teeth!!!! lol

​Absolutely, it is trying to find a balance with everything.  What suits one may not suit another.  It is a bit of trial and error.  I am happy to try something; if it doesn't suit, that is fine, at least I know. 

Totally concur with the bones, anything we can do has to be a plus; it is just trying to balance that and what is good for our bones, with what the rest of our body can put up with.  Back to the balancing act!

​take care, kind regards Carrie

Hi  Carrie, Kathleen et al

I initially thought that the barley was a good idea, I've had in soups and stews over the years, and then I checked and found that it is a no-no because of the gluten which causes me to have water-retention. Also having a job finding dried sticky prunes, the local stores have stopped stocking them. We do have some crosses to bear  At a pinch I can probably use tinned prunes but they do tend to have a lot of additives.

I need to check on these.

Regards

Colin.

Try raisins Colin until you find some 🤗. 

From dr google - Food sources of boron include apples, bananas, cherries, grapes, oranges, pears, plums, peaches, dates, prunes, raisins, green beans, broccoli, lettuce, carrots, almonds, beef, chicken, turkey, cheese, and milk.

Thanks for that but I already have some of those, I actually have quite a mixture for my breakfast along with some gluten free cereal and have always had dried prunes which I enjoyed until the last couple of days. i can get them from  a well known book seller but the price is at least twice that of the supermarkets, even buying in bulk.

I'll just keep looking or change my breakfast!

Colin

Hi Colin et al,

​What a shame with the barley   I try to have gluten free a bit but it has fallen by the wayside at the moment as gluten free bread one buys is disgusting! lol  My youngest nephew gets his on prescription as he is a Coeliac, but even that doesn't taste very nice the few times I pinched a bit to try!! lol

​Have you tried Amazon re the dried sticky prunes?  They seem to do most things - or maybe another online company?

​I have been trying to look into the nutrients link you sent me; seems I am woefully low on some of them so will have to recheck and 'think it out again' - only ones I am defo covered on is the Vit C, Magnesium, Vit D and Calcium, Zinc, Manganese, K2 and B6.

​Take care all, kind regards Carrie

Hi Jean,

Am having far more bananas and apples, broccoli, lettuc, chicken, turkey, so getting there!

​kind regards Carrie

It's sometimes surprisingly hard to get that 5 fruit and veggies a day, isn't it?

🍎🍌🍒🍲

I like the whole grain barley.  Also sometimes have whole grain oats, called "prairie rice"!

Hi Jean,

​Yup!  More often or not I fail....had my banana today and some veg, had the barley et al for supper, will have an apple later!!

​kind regards Carrie

Hi Carrie, Jean et al

Just poking my oar in:

Had 6 dried prunes before breakfast

Mixed Salad for lunch (accompanying gammon steak)

Pineapple chunks after lunch

Apple and pear mid afternoon

Banana after tea

Kiwifruit 10 minutes ago.

But it is sometimes not quite as easy.

Got to fuel my fingers!

Regards and best wishes

Colin

Colin,

HA.... so you are like me, you add things to your list of things to do, when your list is already wayyyy too long?!?!?!  

Jill

 

Hi Jill,

Me too! lol

​kind regards Carrie

Hi Colin,

You put me to shame!!! lol

:D......I have good intentions but then something else tends to happen my end which throws my schedule out lol

​kindest regards Carrie

Hi Jill

Hope that you are well and looking after your bones.

I seem to remember a saying that went something like 'If you want something doing, ask the busiest person you know'. It seems to be very true.

Found some 500gm bags of dried prunes and bought three to gain a little time to look for some more. In days gone buy, grocers were quite happy to order a box full, but supermarkets don't care and we seem not to have any proper grocers any more.

Burbling again - got things that I should be doing!

Kindest regards

Colin

Oh boy... that's me!!!  Good intentions and then something else happens....  er... uh... like checking emails, and the like!!!  UGH!

Thanks Colin.....  I'm attempting to care for my bones......  

This past year I was experiencing quite a bit of depression (that's another story), so I sat WAYYYYYYY too much....  now trying to get my body moving more again, and keep it moving........  

:D lol

Re the good intentions bit - with you there!!