Strong Bones Support Group (2)

https://patient.info/forums/discuss/osteoporosis-and-supplements-515345?page=0&order=Oldest

https://patient.info/forums/discuss/how-is-everyone-going-with-their-osteoporosis--491779

https://patient.info/forums/discuss/does-osteoporosis-cause-pain--514974?page=0#2131208

https://patient.info/forums/discuss/are-some-people-being-prescribed-drugs-for-osteoporosis-but-never-had-a-bone-density-scan--515679?page=0&order=Oldest

https://patient.info/forums/discuss/bonviva-ibandronic-acid-506991?page=0&order=Oldest#2093953

https://patient.info/forums/discuss/people-diagnosed-with-severe-osteoporosis-around-tscore-of-3-5-or-worse-519079?page=0&order=Oldest

https://patient.info/forums/discuss/people-diagnosed-with-severe-osteoporosis-around-tscore-of-3-5-or-worse-519079?page=0#2177353

​kindest regards Carrie

Hi Carrie

I stumbled across this discussion and thought that you might find it interesting:

https://patient.info/forums/discuss/exercise-for-osteoporosis-523748?page=0#2214895

Kindest Regards

Colin.

​Thank you, will check it out.  Been a tiring day today.  I concur with what you said to Respecthealth, it really is such a difficult decision especially when the professionals think they are so right.

Spk soon.

​Kindest regards

​Carrie

Hi,

Sorry to hear of your mum's problems which sound to be quite serious. I assume that the osteoporosis seriousness was assessed after a dexascan and there would be some T-scores available for the areas where there are problems. Were there any fractures?

The fact of her age should have no bearing on the way that she is treated by the GP. If you are not happy with his treatment of your mother, either take him to task over it or make a formal complaint. Every patient has a right to proper consideration and appropriate treatment. I suggest that you ask him to tell you about other treatments which are available although it sounds as though your mum would probably only be invited to take Bisphosphonates which may be even worse than Teriparatide. Because of the said severity of the osteoporosis there is less likelihood that it can be totally stopped and reversed but even with the treatment you mentioned, it is still necessary to take calcium, magnesium, zinc, vitamins A, B complex, D3, K2-7 and possible other minerals and supplements. Exercise is also a good idea to help rebuild the bones but this needs to be at an attainable level and not too intense.

Teriparatide is not commonly mentioned on this paticular forum but a quick look on the search engines shows that there are concerns about cancer and tumors associated with the administration of the drug.

I suggest that in the absence of any other information, you do your own search so that you become more familiar with the drug and its side effects.

Sorry can't think of any sensible way to help at the moment.

Regards

Aristotle.

Wow, so kind! Thank you. It's very comforting to talk to genuinely interested people who are so willing to help.

Mum had some sort of scan in the early noughties, when diagnosed by the Royal Free hospital, but not sure which type.

She was put on the biphosphonate Fosamax by the GP. In 2012, her upper femur broke, and I later found out from my own research that it was probably linked to the drug. It's only supposed to be taken for 10 years, but Mum was on it for much longer as no doctor told her to stop. Even a rheumologist failed to ask about this when I once accompanied Mum who, by then, had been taking it for over 10 years! I've learnt that you really have to get serious about being your own health ambassador and not rely totally on professionals each and every time.

I try to make sure Mum eats and exercises properly, but it's very hard due to her bent posture, which has also affected her stomach area. 

I shall look into the topic of Teriparatide further, and would love to hear from anyone who has had any experience of it or any knowledge.

This is a long thread and so just saw all the articles you have posted here. I can't thank you enough for these Aristotle13. 

Kindest regards

respecthealth

Hi Respecthealth,

?I concur with what Aristotle has said.  And this thread is full of very helpful, supportive ppl, we all help each other as best we can

?It is such a worry.  I, myself, recently saw a Rheumatologist, having been diagnosed with OP in Feb/March after breaking both my wrists last December.  I have found so much help and advice on here and am so grateful to everyone. 

?Aristotle is excellent at forwarding links and information, so any problems do ask!

?I was offered bisphosphonates and do not want to go near them, especially having suffered on the Alendronic Acid   Forsteo was another option but like you have discovered, it really has other nasty effects on the body.  I have been trying to find out more on Evista in case I am pushed futher along the drug line, which from what I can discover is still not good but if my OP deteriorates I might have to succomb too if offered.  At the moment it has been suggested I stick with HRT which should offer me some protection, and of course I am taking the necessary supplements and have increased my exercises as best I can, and improved my diet.  With your Mum in her 70's it is much harder.  Strontium was something else mentioned that you may like to look into as that may suit her better.

Good luck!

Kind Regards

?Carrie

HI to everyone, I'm back from my lovely holiday in Rhodes and I must say it has been so beneficial,lots of swimming in the warm salty sea,lovely walks and I think the hardest decision for me to make was what lovely choice of food items served should I eat today fantastic?? So I would highly recommend an adventure to you all?? X

i also had my appointment with the rheumatologist! ( like you Carrie I was dreading it!.) but he was really great. I was with him for an hour ...I blurted out ( as we do haha) my reasons for not taking biphosphonates and decision to try the natural route ?? After looking at my blood work, DXA results and he even showed me my X-rays he agreed to support my decisiion the only caveat is if I need to start the prednisolone again for the  polymyalgia that I then reconsider a short 4 month course of treatment.Apparently the biggest bone loss happens in the first 3mnths of steroid treatment.He also told me to come off calcium supplements ( to protect my heart ) instead focusing on dietary calcium but to continue with vit D supplements. My DXA scan will be repeated in 3years or sooner if the polymyalgia returns and I just have to call him for a repeat appointment in that instance so I'm really happy with all of that.

Glad your holiday was so good; it sounds lovely!

Hi Kathleen

My daughter also takes K2-7 and recently had significant water retention which she thought might be something to do with the capsule that the vitamin came in. Anyway she went to her GP yesterday, explained the problem and her thoughts on it and would you believe that he had never heard of vitamin K2 at all. And he's supposed to be treating her for osteoporosis!!! There's not really a lot of hope for the majority of the population if this is the knowledge level of the professionals. I suppose she should be thankful that he didn't pooh-pooh her comments.

Hi Patty,

Welcome home and so glad that you've had a lovely time.

It seems that your rheumatologist at least has an open mind and ears. You will have to make sure that you get sufficient calcium or your body will rob your bones for other essential needs. As Kathleen says, the K2-7 will keep your arteries clear of plaque and atheroma - been there, done that and had no problems since I started the K2. Also, dietary calcium is usually easier to ingest than the calcium carbonate. I suppose we should all use the citrate variety that needs very little in the way of stomach acid to be absorbed. I'm probably teaching you to suck eggs!! Sorry about that but I really have serious doubts about the medical profession, there is so much to learn and remember and it really isn't feasible for them to have all the answers at their fingertips (unless they use search engines).

I have memory problems, were you on this conversation/thread when Eileen (Hileena) was still active? I was corresponding with her via email and she wasn't sure that she remembered you but she was very fraught and not functioning at her best back then. Just thought that I would check my memory, too many posts to check back easily.

Take Care of your bones

Kindest Regards

Colin

My GP knows this and admits she does know everything and is time poor with two young children as well as working.

To keep up, they need to be studying and researching daily, and they do not have the time.

If they listen to us it is a bonus because some are too egotistical to believe patients know anything!

HI Colin et al,

I agree that the gps have a routine knowledge on many things and rely on the specialists to advise them on more in depth treatment options however few of them consider alternative therapies as part of treatment ( mainly due to lack of strong evidence).It all depends on them keeping up to date and listening to us patients who have researched our own conditions to a greater degree.We have all found that everything seems to be interdependent ...He told me that non of the treatments currently available were ideal but there is work in progress. Also the most expensive treatments ( £5000 per pop were limited to those in most need on the NHS so they were trying to put pressure on the drug companies to reduce costs. Rheumatologist here were working with cardiologists on the calcium issue so will look forward to hearing more on that one!

im not quite sure what to do about the k2-mk7 ( have been taking with calcium supplement) now that I am not taking the calcium supplement. So if anyone has any research information on the need to take it for dietary calcium please let me know. 

So sorry to hear about Eileen being poorly so sending her big Hugz ?? 

Take care and have a lovely day x I've just dusted my cycle off so heading out for a bike ride ....not great for bones I know but great for building my muscles and as we all know strong muscles build healthy bones?? ..loving being out in the fresh air!????

Welcome back!   Ooh sounds like a fabulous well earned holiday

?I am so glad you got on so well with your Rheumatologist - unlike my own experience.  Interesting that the biggest bone loss happens in the first 3 months of steroid treatment.  AND interesting re coming off calcium supplements.....I wasn' aware that they could have a detrimental effect on the heart.  Yay you on a successful visit and result though   Really pleased for you!!  So.....would it be the bisphosphonates if you needed to restart prednisalone?  Or some other option?

Onwards and upwards

Kind Regards

Carrie

Frax score?  New one on me....what does that mean?   It sounds hopeful whatever for you

Kind Regards

?Carrie

Hi Kathleen,

?You are so right....what I have been trying to say, but been hitting brick walls with doctors   But we know our bodies and what works, and they really should take more time to listen to us.

?Wish I had your GP!!!!!! lol

Have a good day!

Hugs

?Carrie

Thanks Carrie, yes lovely holiday and feel so much better for it ?? Frax score is a research based online tool that the Drs use to calculate your risk of fracture in the next ten years.they enter your personal details ( age,height ,weight, lifestyle habits etc) and your medical results .DXA and medication and the programme calculates % risk. As your risk increases the more they recommend the current treatment options available to them however as we know little consideration is given to the lifestyle factors that we are trying ( diet and exercise) when prescribing treatments. Yes the heart Drs are concerned about the calcium deposits and effect of calcium on heart rhythms following long term use of calcium supplements,so hope someone does some credible research on K2-mk7 soon ! Trouble is these long term studies take years to complete! In the meantime we've all taken a pragmatic approach so it will be interesting when we all share our repeat DXA results. ?? Have a great day x

Hi Patty

?Ahhh.  That has never been mentioned to me, so thanks for explaining about Frax scores.  Is that similar to T Scores?  I had a copy letter from the Rheumatologist through today where he is recommending that I go onto a higher dose of HRT, 1mg Estradiol, repeat Dexa scan in 3 years, and consider taking Raloxifene (Evista) which is a Selective Oestrogen Receptor Modulator.  However he feels that because of my age he feels could be too close to the menopause at the moment so to hold off on that for now.  I'm not sure how I will get on with a higher dose of HRT, or even if my GP would prescribe it, and won't know until after I see her on 9th August. 

?It does seem strange from hearing the benefits of K2 MK7 why this has not been suggested to us all sooner. 

?Absolutely hopefully what we are all trying to do will benefit us   You take care and have a good day!

Kind Regards

?Carrie

hi Carrie & Jill,

The author of the vitamin K2 book does explain all the benefits obtained from taking even small doses of K2-7 and one of the major ones for me, apart from getting the bone in the correct place, is the clearing out of your arteries from such things as plaque and atheroma, not to mention the effects on cancers, dementia and altzheimers. Am I repeating myself or have I just said this to people at the gym a lot???? It also has beneficial effects on teeth and for men, the prostate. The varicose vein on my right leg is no longer visible and the significantly larger one on the left leg is a lot smaller and less noticeable than it was. The crows feet around my eyes are now only visible because they were sun-tanned. If I keep going I shall become a young lad again like I've been feeling for years. The exercise really does help and I think that is why I sleep better. There hadn't better be much more, I keep running out of time and i have important emails and posts to write. Pauline finds all this quite amusing but in reality, it is deadly serious and it is sad that we can't turn the clock back to recover the 70 years that K2 was missing and just known as factor X. I do need to speed-read the book and pick out all the calcium interactions with the other vitamins. One of the big ones is calcium - magnesium and you need a good time between the two. With two calcium tablets to chew, one at breakfast and one at evening meal, that really only leaves lunch for the magnesium if you're having it with a meal. I need to check on the rest soon. I do feel that my program is settling into something that could cure me.

Best wishes to you both and take care of your bones

Kindest Regrads

Colin.

Hi young Colin?? I have to agree with you  on the K2, I've certainly noticed a difference in my ability to exercise, my skin,nails and noticeable difference according to my dentist in my teeth! The fact that I can get out and about a lot more now has certainly improved my mood and I feel much more positive about the future.

love and big HUGZ to all you lovely people who are struggling at the moment wishing you a brighter day xx

Hi Patty (You look young Too)

I'm really only 18 in my head, the rest is just an illusion!.

It's nice to have some visible indication that we are at least on the right lines with one of our decisions. I still fail to understand why the doctors don't at least advise on things like K2 even if they can't prescribe it. It doesn't do the reputation of our NHS any good when the supplements and other 'medications' are denied to us by a bunch of powerful plonkers who don't really know or care how things work. That was today's rant. It probably explains why I rarely visit the GP who wouldn't ask for a dexascan for me for seven years.

I am still convinced that we can beat this thing and it would be easier if we didin't meet unneccessary obstacles at every turn. My next battle will be when I go in in September and ask for and then demand a dexascan to determine my progress. It does seem that there are very view GPs that adopt the 'If it works then it's ok' attitude. Often, instilling a belief that things work is enough to make them work. I don't have that luxury, I tend to look too deeply into things.

Going off now to see if I can concoct sensible lists of foodstuffs that have Phosphorus and another that lists those that have Potassium. This is relatively easy but just means searching through my library.

Really pleased to read that you are visibly improving, that is a very good thing to happen.

Keep up the good work and take good care of those bones.

Best Wishes and Kindest Regards.

Colin "the young".

Hi Patty,

?So glad you're noticing a difference   My mobility is easier I think, but my nails and skin not so.....but I guess that could be hormone related.  Plus I was wondering if in taking the strontium has affected the calcium in some way.  I finish the bottle soon so won't buy any more...it is the strontium citrate the supplement I hasten to add! lol...or maybe it is just me!!!! lol 

?Hope you stay positive and improved and enjoy the rest of your day

Kind Regards

?Carrie

Hi Colin, (the young!)

?I love your turn of phrase! :D  Totally agree with you about doctors.....their conveyor money led belt is not helping us patients at all.  I seem to have been back and forth to mine quite a bit....but am hoping that I will be able to soon leave a loooooooong period of time before I have to go again! lol  They depress me!!! lol 

Well done on your charts and lists....invaluable, and thank you so much!

You take care!

Kindest Regards

?Carrie

Hi Patty

I just did a re-read of your post of two days ago where you comment that your rheumatologist wanted you to give up calcium, supposedly to protect your heart - almost certainly the cardiac arteries.

I am not a doctor but I am reasonably well read about the workings of calcium and K2-7 and I believe that I should diplomatically advise you of the following. Many of the current medical staff are not fully aware of the workings of K2-7 and its role with calcium because the K2-7 has been hidden for the last 70 years

If you cut out your calcium supplement and don't get enough dietary calcium, your body will recognise this as a calcium deficiency and will begin to rob your bones to make up any shortfall. This will almost certainly aggravate any osteoporosis that you currently have. If you are able to make up the shortfall of calcium by using dietary calcium then all should be well without the supplementary calcium.

If you do not cut out the calcium and continue to take your Vitamin K2-7, your bones will be protected and your arteries should be kept clear by the K2-7 since this is one of the many things that this vitamin does.

There is a very good description of this in the calcium paradox book.

Really, all that I am trying to do is advise you to be very careful and make sure that you get sufficient dietary calcium if you do cut out the supplement.

Just concerned for you

Kindest Regards

Colin.

Hi Carrie. I see what Aristotle means by being blocked by the moderator! Just rewriting to say a big Thank You to you too for the great info. I'm sorry to hear about your wrists. But we must remember our body is a marvellous creation that will fight anything to no end, and there are awesome caring health teams out there. The National Orthopaedic Society can help you too.

Hi Respecthealth,

?No worries....I think we have all been 'modulated!' lol 

?Thank you re my wrists....I am much improved and gradually regaining strength, still seeing physio and building my my arm and shoulder muscles, but all good things take time. 

?Thank you for your note re the national orthopaedic society too.

?Hope you have a good day.

Kind Regards

?Carrie