To take or not to take!!: I have now... - Bone Health and O...

Bone Health and Osteoporosis UK

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To take or not to take!!

netball7 profile image
89 Replies

I have now completed many hours of research from Journals, websites and blog's and found the following information.

T Scores are compared to a 30 year old healthy person so not realistic as I'm in my 50's and we loss BMD as we get older naturally as its part of the ageing process. Spine is 2.9 (L1-L5) and hip 2.5 (on the line)

Z Scores compares me to same sex/age scores come down to Spine 1.9 and hip 1.6 however I have also gone through the change and maybe my comparison had not! (10% difference also allowed). So in Osteopenia markings.

Risk factors to take into account I have gone through the menopause and have RA which I am told is added to the T score so because of this I went into Red instead of Amber.

I have never had a Vit D blood test - I have just requested one.

Another factor is losing Calcium again can be detected with a 24 hour urine collection but doctor says NO.

Parathyroid ok but again you should get it tested as it contributes.

The AA meds might increase bone density but they interfere with the osteoclast/osteblast which look after healthy bone...research now suggests that this can cause fractures!

Only my view point and not intended to sway anyone in any direction as we are all different but thinking now of increasing WB activities, Calcium and Vit D through diet or seeing a nutritionist for help.

Any comments greatly received I am just not happy to take a pill that can have negative outcomes! Are you - or have you followed a different route ??

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netball7
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89 Replies
fmkkm profile image
fmkkm

Hi netball,

I’m pretty much in line with all that. I’m 66 and I have been on prednisone for a couple years but it is down to a low level now. Prednisone is the only thing I take besides supplements. I have decided against any of the bisphosphonates, too many side effects for me. I have added a weighted walking vest and trying to increase protein a bit.

sweetsusie profile image
sweetsusie in reply to fmkkm

Totally agree with you forwardmotion! Maybe if enough people (including men!) will stop listening to the doctors that are prescribing these perverted, awful bone meds., they'll finally take them all off the market.

LynneH-19 profile image
LynneH-19

You are certainly correct to get your vit D level checked and continue to have it checked at least twice a year.

I try to keep my D at an optimal level around 150 nmol/L. You are unlikely to improve an ‘adequate’ D blood level of say 50 nmol/L by diet alone. I take either 2000 or 5000 IU of D3 for general all around health, depending on blood level and season.

I usually manage to get my Ca RDA of 1000 to1200 mg from diet, by including dairy, especially yogurt.

Best wishes

Bemoresquirrel profile image
Bemoresquirrel

Hi netball7,

MiaLee has also done a lot of research, it might be worth searching for her posts on here.

Interestingly, research has showen that our endocannabolid system has a role in bone density.

cannabinoids

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

Research has also shown that Curcumin, the active component of turmeric can increase bone density by 7%.

If you’re interested, I can send you tips on getting started with CBD and the type of curcumin to buy. Choosing the right product can be tricky, as there is some confusion over turmeric strengths.

fmkkm profile image
fmkkm in reply to Bemoresquirrel

Hi Rosey,

Thanks for the research article. I have been taking CBD for a month and I use Curcumin 95 in my smoothie. I am happy to hear about the possible added benefit of CBD and bone health. That is not why I started taking it but I am thrilled with this additional benefit 😎

Bemoresquirrel profile image
Bemoresquirrel in reply to fmkkm

Hi forwardmotion,

I’m so pleased, I was thrilled too, when I came across it. 😊 Would you like the sheet of hints and tips for getting the best out of your CBD, that I’ve collected over the last few years? I send via HealthUnlocked, so no email needed. Rosey

fmkkm profile image
fmkkm in reply to Bemoresquirrel

Yes please😎

Bemoresquirrel profile image
Bemoresquirrel in reply to fmkkm

It will be on it’s way shortly. 🙂

Met00 profile image
Met00 in reply to Bemoresquirrel

Rosey, would it be possible to send it to me too please? Thanks very much.

Bemoresquirrel profile image
Bemoresquirrel in reply to Met00

Yes of course, it’s on it’s way! 🦉

Met00 profile image
Met00 in reply to Bemoresquirrel

Rosie,I can't find it. I've checked my messages, am I looking in the wrong place?

Bemoresquirrel profile image
Bemoresquirrel in reply to Met00

That’s strange! I’ve definitely sent it, I can only image it has been held by the admin team for some reason, though I’ve not had a problem before. I’ll try again, please let me know if you still don’t receive it.

Bemoresquirrel profile image
Bemoresquirrel in reply to Bemoresquirrel

I’ve done that! Try looking under Chat, the 3rd icon from the left at the top of the page, or Messages, if you’re using the app. If that doesn’t work, I can try sending you a download link.

fmkkm profile image
fmkkm in reply to Bemoresquirrel

I don’t have it either. Maybe it will come through tomorrow.

Bemoresquirrel profile image
Bemoresquirrel in reply to fmkkm

How strange. I’ve been merrily sending it out on the FMA UK forum. Are you on Twitter or Instagram? I have the makings of a plan.

Met00 profile image
Met00 in reply to Bemoresquirrel

Yes, I looked under chat before, still nothing there.

Bemoresquirrel profile image
Bemoresquirrel in reply to Met00

Very strange, I’ve not had this problem before. 🤔 I’ve tried sending you a download link as well.

Bemoresquirrel profile image
Bemoresquirrel in reply to Bemoresquirrel

Are you on Twitter or Instagram? I’m trying to come up with a plan.

fmkkm profile image
fmkkm in reply to Bemoresquirrel

Just found out there is a lot of trouble with the HU site right now. Maybe, wait a day or two and repost. I had your PM this morning and now it is gone again 😞

Bemoresquirrel profile image
Bemoresquirrel in reply to fmkkm

Ah that explains it! So pleased you’ve got it now. 😊

TNM46 profile image
TNM46 in reply to Bemoresquirrel

Please could you send to me too Thanks x

Bemoresquirrel profile image
Bemoresquirrel in reply to TNM46

I’ll do that now! 🙂

Met00 profile image
Met00 in reply to Bemoresquirrel

Thanks Rosey, I've got it now. I had to "Follow" you and send you a message, then suddenly all your messages appeared! Wow, amazing amount of info, thank you so much, so generous of you to share all you've learnt!

Bemoresquirrel profile image
Bemoresquirrel in reply to Met00

Thank you for your lovely comments. It seemed a bit unfair, not to share. 😊 I have also learnt things from the questions people ask, or the comments they make, so it’s a win, win situation. Having a memory like a sieve at times (it’s a fibro fog thing), I’ve even been known to refer to it myself at times! 😂

wordwarrior55 profile image
wordwarrior55 in reply to Bemoresquirrel

I am not good with understanding how these forums work and how to find the info you shared. I take pure foods to get my vitamin C, calcium from plant sources, vit. K, lots of D, magnesium, etc. Also calcium from cheese. i do weight lifting and take turmeric, fish oils, and other good supplements. Anything I am missing?

Bemoresquirrel profile image
Bemoresquirrel in reply to wordwarrior55

Hi Wordwarrior55, I’ll send you a link to the information. Rosey

Happines profile image
Happines in reply to Bemoresquirrel

I also would appreciate the information sheet on CBD oil, as I’m sure many would as well.

Bemoresquirrel profile image
Bemoresquirrel in reply to Happines

Good point! I’ll put a post on the forum tomorrow. I used to post it in the thread, but it’s a bit big now and I don’t want to annoy people who aren’t interested. I’ll send your copy now. 🙂

antiP2219 profile image
antiP2219 in reply to Bemoresquirrel

I'd like a copy of that sheet, too.

Bemoresquirrel profile image
Bemoresquirrel in reply to antiP2219

I’ll send it to you now. 🙂 Due to the problems HealthUnlocked are having today, if it doesn’t arrive try following me, as that’s worked for other people today. I won’t be offended if you unfollow me afterwards!

angie26 profile image
angie26 in reply to Bemoresquirrel

Hi I would love your hints and tips, I am thinking about cbd, I did buy a bottle from Holland and Barratt some time ago but the taste was so awful I did not continue with it, also I'm not sure where to buy as there is so much out there about how pure it is. I believe you can get it on prescription im the USA!!

Bemoresquirrel profile image
Bemoresquirrel in reply to angie26

Hi, I’ll send it now. Unfortunately, it’s going to take time here, as the government and NICE want more evidence before prescribing it for chronic pain and other conditions. The good news is that they government paper included medical cannabis and any products derived from it, so in theory that includes CBD. I guess we just have to be patient and remain hopeful! 🙂🤞

mathruler49 profile image
mathruler49 in reply to Bemoresquirrel

I would very much like to receive your sheet of hints and tips to mathruler49, thank you in advance, Linda

Bemoresquirrel profile image
Bemoresquirrel in reply to mathruler49

Sending it now Linda. 😊

netball7 profile image
netball7 in reply to Bemoresquirrel

Hi Yes please that would be great. I have just read the research paper on cannabinoids - quite a heavy read! CBD info would be great along with curcumin.

Many thanks

Bemoresquirrel profile image
Bemoresquirrel in reply to netball7

Your wish is my command! 💫 I thought it was a really good idea, so I’ve added a section to the bottom of the CBD tips! It will be with you soon! 🙂

annelii profile image
annelii in reply to Bemoresquirrel

Thanks Rosey, will also look out for it.

GMOI profile image
GMOI in reply to Bemoresquirrel

Hello Roseyinthegarden, Very interesting that the link to research also mentioned Amgen as contributors to information. Amgen is the American manufacturer of Prolia. So here we have pharmaceutical companies collaborating in government funding. Please message me anymore info with the CBD bone health ! Thank you

Bemoresquirrel profile image
Bemoresquirrel in reply to GMOI

I’m lost for words!!! I’ll have a look and see what else I have. 🙂 GreenMedInfo is a wonderful resource.

I’ve just sent you the CBD/turmeric info. x

CliCli profile image
CliCli in reply to Bemoresquirrel

Hi Rosie, I'd love that info too please. Thanks! :-)

Bemoresquirrel profile image
Bemoresquirrel in reply to CliCli

Sending it now! 😊

CliCli profile image
CliCli in reply to Bemoresquirrel

Thanks so much Rosie :-)

in reply to Bemoresquirrel

Hello from Australia, Rosey. My husband is keen as to get off the dreaded Prolia - due for his 5th dose this week! We feel his doc is just another smiling assassin in Amgen's generous circle of friends. Could you kindly forward to me your interesting info please. We may just PULL OUT, although he's had no side effects (yet.) Thanks, in anticipation, Sal

Bemoresquirrel profile image
Bemoresquirrel in reply to

Hi Sal, I’m so sorry to hear that, I’m sending it now.

Bemoresquirrel profile image
Bemoresquirrel in reply to

I meant to say, I love your description of Amgen, it’s spot on!! 😁

netball7 profile image
netball7 in reply to GMOI

Oh...wow..speechless

Viazoy profile image
Viazoy

I wish to goodness I had carefully done your research before agreeing to Prolia. I trusted my doctor and will suffer the rest of my life because of this. Take-home message: Do your research carefully before taking any drug for osteoporosis.

antiP2219 profile image
antiP2219 in reply to Viazoy

I'm afraid I'll be suffering the rest of my life from just one shot of Prolia! Grrrrrr!

sweetsusie profile image
sweetsusie

I'm with you, netball77! I try taking Fosamax with disasterous results...never will I take/use any of these awful bone meds. They all should be taken off the market...the side effects are insane!

Savbing profile image
Savbing

Lifestyle is up to you to research, however there is a place for the medication. A good Dr is not out there to harm you, again do your research and be informed.

Viazoy profile image
Viazoy in reply to Savbing

Easier said than done. Some docs don’t like to be questioned or haven’t the time to do their own research and rely on what drug company retailers tell them, and drug company warnings may not be adequate. Many drugs are helpful but people need clearer information about risks involved and safer options, and this information is often not easy for patients to find.

Bemoresquirrel profile image
Bemoresquirrel in reply to Viazoy

You’re right Viazoy. When I suffered a rare adverse reaction, the information available was very vague and understated, compared with the information available in other countries.

In addition, risk factors that would have alerted the doctor, weren’t available to them. Having said that, I’m not bitter about the impact it has had on my life, but given an informed choice, I’d have certainly asked for a different drug.

Congirl profile image
Congirl in reply to Bemoresquirrel

Hi Rosey

Would you mind sending me the hints and tips? I have recently been diagnosed with Osteoporosis and have refused the bisophonates and calcium my GP prescribed.

When I asked for my report of the scan it showed that I may have primary hyperparathyroidism and having researched this condition it says that bone meds won't work. I have managed to get an endo appointment but this is more because the GP was alarmed that my TSH is only 0.05. I have an underactive thyroid so have been self medicating.

Thank you

Bemoresquirrel profile image
Bemoresquirrel in reply to Congirl

Hi rosw, I’m so sorry to hear about your TSH levels and your osteoporosis diagnosis. 🙁 The combination sounds difficult to manage.

I don’t know if you’ve come across it, there is some, admittedly conflicting evidence, that oscillating power plates may prevent further bone loss. The original vibrating platforms were developed by the Russians I think, to prevent bone loss in astronauts.

Oscillating is supposed to be kinder on your joints, than just vibrating. I have a Vibrapower Slim and can’t wait to be well enough to use it again. A good tip is to use a garden kneeling pad if you do the kneeling exercises. I couldn’t initially, but managed a couple of minutes each time, after a few months of using it 5 x a week.

It increased my mobility, flexibility and muscle mass - though that wasn’t hard!!

The CBD hints and tips now include info and links on turmeric/curcumin research.

I’ll send it to you now. 🙂

Congirl profile image
Congirl in reply to Bemoresquirrel

Hi Roseyinthegarden, thank you for the information regarding the Vibrapower Slim, sounds very interesting.

Bemoresquirrel profile image
Bemoresquirrel in reply to Congirl

I’ve sent you a link to some research, but whether you get it is another matter! 😂

Mitziecat profile image
Mitziecat

Hi netball7

I agree with your thinking. I took AA for a year while on an 18 month course of steroid treatment for PMR. Bone density scan at the end showed osteopenia in the lumber spine and osteoporosis in one hip. I was advised to go back on AA for 5 years but declined.

I am trying to manage it with more exercise and diet and have been given Adcal. I had a Vitamin D test and it was slightly low so have bought additional Vit D supplements. At the moment I am worrying about the need for Vitamin K2 but decided to buy some yesterday (50ug). Does anyone know what is the right daily dose? I am seriously thinking of seeing a nutritionist who knows about Osteoporosis. I take turmeric supplements and wonder how it would interact with Vitamin k2.

Good luck with the decision planning.

Bemoresquirrel profile image
Bemoresquirrel

Hi Angel2811, I’ve been taking CBD for three years now and have been able to come off my fibro meds completely.

In the last 18 months, I’ve had a couple of freak accidents, which include fracturing a lumbar vertebrae and worsening a degenerating disc and crushing my leg which has lead to pretty awful complications. It’s fair to say that CBD has played a part in my mental well-being during all this. I wouldn’t want to be without it now. All I take med wise, apart from for asthma, is low dose codeine at night for my back.

I’ve put together some hints and tips to help people get the best from CBD. Let me know if you would like them and HealthUnlocked will send them to you.

It includes info on low dose CBD for chronic pain and a link to an article about taking turmeric for pain.

I buy mine from Simply CBD and speed around £20 a month, plus postage. Rosey 🙂

annelii profile image
annelii in reply to Bemoresquirrel

Thanks again Rosey, have just followed you, are you posting the CBD/ curcumin info or messaging it? Spend loads of time doing research myself but so much seems conflicting, always good to see someone else’s take on it. Thanks again.

Bemoresquirrel profile image
Bemoresquirrel in reply to annelii

I’ve added it to the bottom of the CBD information. I’ll send out a post to let people know, when I’m sure HealthUnlocked has fixed the messaging problems.

Unfortunately, one of the link is to a medical journal with adverts, so to comply with HU rules, I can’t openly post it, which is fair enough. 🙂

Janjos profile image
Janjos

I insisted on a referral to a endocrinologist who carried out all the blood tests and 24 hour calcium tests. Doctors cannot refuse you a referral when requested. It put my mind at rest that my own treatment was correct. The only item he was unhappy with was calcium as I had enough and so not to supplement it. He also booked my next dexa scan for a year's time. I feel much happier knowing that he is monitoring my self medication. Doctors are general practitioners not experts. Mine was pretty clueless and would have me on adcal even though taking calcium could have caused me other health problems. I had to be pretty firm with him about the referral.

annelii profile image
annelii in reply to Janjos

Good to know thanks!

Bemoresquirrel profile image
Bemoresquirrel

Has everyone who wanted the CBD and turmeric information, now received it? Please let me know if you haven’t and I’ll send you a link to an automatic download. Rosey 🙂

Congirl profile image
Congirl in reply to Bemoresquirrel

Hi Rosey

Checked my messages but not arrived yet.

Thanks

Rosw

Bemoresquirrel profile image
Bemoresquirrel in reply to Congirl

Hi Rose, I’ll send you the link now, this has been getting through, so fingers crossed! 🤞 Rosey

fmkkm profile image
fmkkm in reply to Congirl

Still have not received it☹️

Meganisi profile image
Meganisi in reply to Bemoresquirrel

Hi Rosy I would love a copy too please if you don’t mind sending it? Thank you for sharing all your research. Very kind.

Bemoresquirrel profile image
Bemoresquirrel in reply to Meganisi

That’s very kind, I’m happy to share. 😊 Sending it now.

Justme13 profile image
Justme13 in reply to Bemoresquirrel

Hi Roseyinthegarden

I have just come across this thread.

Would it be possible for you to send me the CBD and turmeric information too? I already take turmeric in my anti cancer recurrence strategy, but not sure if enough.

Thanks a lot.

Bemoresquirrel profile image
Bemoresquirrel in reply to Justme13

Hi Justme13, I’m so sorry to hear you have cancer. Here’s the link: bit.ly/Roseyinthegarden

It will automatically open as a pdf file, no email address or name needed. I’ve made the link open to everyone now, as I couldn’t cope with the number of requests. I’ll post a link to any future updated versions here on the forum. You’re welcome to message me if you have any questions after reading it. Rosey

Justme13 profile image
Justme13 in reply to Bemoresquirrel

Thank you for that link. Just had a quick skim, but will study it in more depth over the next few days.

Jessie1234 profile image
Jessie1234

Rosie, I feel that I'm troubling you, adding to all the requests for info on CBD oil but I would love it too. If it's being posted somewhere on the site I'd try to access it. You are an angel.

lm1925 profile image
lm1925 in reply to Jessie1234

Sorry to add to the list but Please may I have a copy too . I have been advised to take AA and I really don’t want to , would like to try other routes first , thank you

netball7 profile image
netball7 in reply to lm1925

Hi Have they given you your scores? I am still looking at research papers with regards to AA like you I do not want to take it! I actually took 1 and was very ill.

lm1925 profile image
lm1925 in reply to netball7

I had my first dexa in 2012. My T score was L4. - 3.1 L3 - 2.5, 2016 L4 - 3.2 L3 - 2.5. The combined 2.8

My gp recently referred me

for another , my T score was L4 - 3.3 , L3 - 3.2 combined 3.5. I am rather concerned as there has been a considerable jump from 2.8 to 3.5.

I am very surprised as the first 2 scans were 4 years apart with little change , then this scan after 2 years hadsuch a big drop .

The first 2 scans were done at one hospital, latest another and they were different machines.

I am having another scan in 2 weeks and seeing a consultant for a second opinion .

I really don’t want to take AA and am hoping that the latest scan and large drop was due to a different machine 😕

Bemoresquirrel profile image
Bemoresquirrel in reply to Jessie1234

Hi Jessie, No trouble at all, apologies for the delay, I missed seeing your post. 🙂 If feel so bad for Netball7, the original poster, it’s got a bit out of hand. 🤭

Jessie1234 profile image
Jessie1234 in reply to Bemoresquirrel

Rosey I the garden, I didn’t receive the information re CBD oil and turmeric. Is it posted somewhere I could access it ?

Bemoresquirrel profile image
Bemoresquirrel in reply to Jessie1234

Hi Jessie, Someone told yesterday that in order to receive it, you will need to first. Try that and see if it makes a difference. I won’t be offended if you unfollow me afterwards! 🙂 Sending again now. Rosey x

Jessie1234 profile image
Jessie1234 in reply to Bemoresquirrel

Rosey, could you clarify that please? Try what?

Bemoresquirrel profile image
Bemoresquirrel in reply to Jessie1234

Sorry Jessie, you need to follow me, before you can see the message apparently. You will then see two messages, as I managed to delete the first file. Rosey

Jessie1234 profile image
Jessie1234 in reply to Bemoresquirrel

Thanks very much Rosey. I'll do that. You are very kind.

Bemoresquirrel profile image
Bemoresquirrel in reply to Jessie1234

Let me know Jessie, if you have still have a problem seeing the link. 🙂

Jessie1234 profile image
Jessie1234 in reply to Bemoresquirrel

Rosey, maybe it's me being a bit useless with technology!! I followed your post on CBD oil and Tumeric but nothing. Maybe I just need to follow you! Sorry for being a nuisance 😣

Bemoresquirrel profile image
Bemoresquirrel in reply to Jessie1234

I deleted one file by mistake, sorry Jessie. The other message has the new link and should work, I’ll send it again. You’re not a nuisance, we will get there eventually!

Jessie1234 profile image
Jessie1234

If it’s any consolation Rosieinthegarden it’s 10 years since I was given a dexa scan result of -2.5 in my spine and I refused medication. No breakages in the meantime, well bar a slight fracture in the palm of my hand where I stepped out of a car not knowing there was a 6 inch drop to the footpath and went down with a clatter! The hand saved me. I also slipped on a wet manhole going down a hill, fell on my hip and was fine. My dancing, walking and Pilates keeps me right plus some weights which I need to get back to and of course supplements which I’ve only taken seriously in the last year or so. Mind you now nearing mid 60’s I’m a bit more anxious.

Jessie1234 profile image
Jessie1234

And hopefully some consolation to Netball too! It’s not a disease......it’s the natural process of aging. Low dexa scores does not equate to the testile strength of bones.

Collywobbles64 profile image
Collywobbles64

Hi Netball7,

I have been taking viridian bone complex as well as vitamin D3 and vitamin K2 on a regular basis over the last 3 years but my osteoporosis has got worse. I've privately had my thyroid tested but this is normal. I did have very low vitamin d levels about 8 years ago and got these up to an optimal level but have not had it tested for a couple of years now.

There is information that suggests a link between celiac disease and osteoporosis and I am awaiting the results. You would think as a matter of course that they would test you for all these things but instead they want you to take some very nasty drugs, again there is info that AA can cause fractures of the femur bone. I think Harvard University did some research concluding that AA's whilst increasing bone density because they interfere with the bone modelling process, leave old bone that is brittle.

My conundrum is that I developed this disease before the menopause and whilst I was still a very active person who eats a very good diet. I believe in cause and effect - there is a cause but the doctors don't seem interested.

netball7 profile image
netball7

Hi

I feel your pain. I have done a lot of research and have decided that I am not going to go on the medication as the studies completed are not in favour of any bone medication and question there long term effects.

We lose bone density as we get older as it is a normal ageing cycle and I have lots of friends that are probably the same (low bone density) but have never needed any test as they are healthy!

I have spoken to a few specialists and they are of the opinion that meds are given out too quickly with no real discussions. I have a good diet, but due to arthritis not as active as I would like to be. My calcium levels and Vit D are good so I am going to try and increase activities. This is not a disease but a natural process and strength of bone needs to be taken into account which it is not.

Not for everyone and perhaps if I start to suffer fractures I will think again - good luck on your journey and wish you all the best

Siamang profile image
Siamang

Great information.I keep thinking back to grandparents and great grandparents who never had bone scans and osteoporosis meds. Yes they may have been stooped over in old age but aged happily with their aches and pains. Why aren’t we being allowed to age naturally also!?

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