Osteoporosis : Hi Have had a bone scan this morning... - PMRGCAuk

PMRGCAuk
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Osteoporosis

Mitziecat
Mitziecat

Hi

Have had a bone scan this morning and it showed osteoporosis in my right femur and osteopenia in the left and spine. Completely gobsmacked as I have been on AA and only stoped in June as now on a low dose of Prednisolone. Spoke to GP and first suggestion was to go back on meds but I have said that I would rather try more exercise and diet.

Seeing GP on Monday as she wants to work out my risk factor. Suggestion of referral to a bone clinic was mentioned. She said that I might have had it before going on AA and steroids but I am not convinced. Has anyone Managed to improve osteoporosis without medication?

T-scores:

AP spine -1.3

Left neck of femur -2.3

Right neck of femur -3.2

Total left -2.0

I read about someone that wrote a book about how to improve the result but can’t remember the name. Any advice appreciated & best wishes to you all

33 Replies
oldestnewest

Have your scores improved since taking AA? People on this forum have managed to improve their bone density without bisphosphonates.

Mitziecat
Mitziecat
in reply to piglette

Hi

I only had the scan done today and never had one before so it will be used as a baseline. Difficult to insist that it was caused by Prednisolone or if if AA helped in any way.

Thanks for your reply.

piglette
piglette
in reply to Mitziecat

That’s a pity, so you can’t really knock the AA I suppose.

Yes. But I had a diagnosis of low bone mass, aka osteopenia. Within on year, over half that year still at a dose above 5 mg of pred.

healthunlocked.com/pmrgcauk...

Ronnie101
Ronnie101
in reply to HeronNS

I have to admit to being confused by all the advice. The National Osteoporosis Society, which in the UK must be the definitive source of advice (?), recommends using bisphosphonates, as does my GP and consultant (Rheumy). Yet they are roundly condemned by alternative practitioners, and, it would seem, on this forum.

The calcium supplement prescribed by my GP is calcium carbonate, but this is not popular among the alternative fraternity (which seems to suggest calcium hydroxyapatite or citrate). The National Osteoporosis Society says "Research has been unable to prove that one type (of calcium supplement) is

better for your bones than another".

Who are we to believe? I know the ultimate choice is ours, but we are mere, relatively uneducated, mortals looking for guidance!

I also know that natural is probably best - ie more exercise, better food choices - but when you're faced with aching limbs due to PMR, 10,000 steps suddenly become like climbing Everest ( and adding a weighted vest like a masochistic implement of torture), and it's so difficult to monitor calcium in foods when you're also juggling carbs and blood sugar etc.

Sorry to sound so negative and grumpy (going through various pred induced side effects including osteoporosis, high blood sugar, blood clotting, torn shoulder muscle and can't seem to get my pred dose down). That's my excuse!

PMRpro
PMRproModerator
in reply to Ronnie101

It is unfair to say this forum roundly condemns the use of bisphosphonates. We do say it is wrong for them to be handed out like sweeties as a PREVENTATIVE. The first step should be a dexascan to see if they are required at the outset.

My own dexascan after less than 3 months of pred was fine so I took no bisphosphonates (which another GP had handed out together with the pred) - and after well over 7 years on pred my bone density has barely changed and all I have taken is calcium carbonate and vit D. Loss of bone density is NOT inevitable just because you are on steroids - and the only way you can tell is by having dexascan at regular intervals, usually 2 years. As to which calcium supplement you use - calcium carbonate is the cheapest so that is what is covered by healthcare systems - not jsut in the UK, the rest of Europe too. You can have anything you like if you pay yourself.

Bisphosphonates were marketed as a miracle by the company that developed Fosamax, a drug that had been used for many years already, no side effects, perfectly safe and there would never be another fractured hip ever. But they had only been used previously for patients with Paget's disease which is rare so not many people had been on the version used previously anyway. It is over 20 years since Fosamax was launched onto the market in 1995 and since then new facts have emerged with the widespread use in millions of patients and for long periods - which is a common occurrence with new drugs, it needs a very large population to get true figures.

This

health.harvard.edu/diseases...

is a good and fair article from a reliable source explaining what may happen. As long as these facts were unknown it was fair enough to recommend taking bisphosphonates as the evidence had been they DID improve bone density. But the truth is that high bone density doesn't automatically confer a resistance to breaking - people with low bone density don't break legs, the majority of broken bones occur in people with so-called normal bone density. And the bone formed eventually develops cracks that lead to what are called atypical fractures - especially of the femur (thigh bone) which can break without doing more than just twisting with your foot in position. In the last couple of years we have a had a couple of people on the forum who have suffered such fractures which now won't heal.

People who have already developed osteoporosis or who are close to doing so SHOULD consider using alendronic acid or one of the other options. But they must be aware of the potential problems which are associated with all of them. Unfortunately the average GP or rheumatologist may be a few years behind and not be entirely aware of it. Or think it is scaremongering. Since the latest recommendations are not to take bisphosphonates of any sort for more than about 3 years - surely it makes sense to see if you need them?

Prolia/denosumab has also been hailed as a game-changer - but recently they have found that you can't just take it for a couple of years until the bone density is increased and then stop. If you do there is a rebound effect where bone density is lost far more rapidly than under normal conditions and the result may be multiple spinal fractures - one of the things it was to prevent. If you start on Prolia you won't be on it for just a couple of years - you will be on it for life or you will have to switch to bisphosphonates when you stop Prolia.

Ronnie101
Ronnie101
in reply to PMRpro

I apologise for my poor choice of words (I did say I was grumpy) - perhaps I should have said bisphosphonates are often criticised on this forum, which they are, and perhaps rightly so. My point was that the "experts" in the UK continue to recommend and prescribe them, which leaves many of us in a dilemma about what to do. Similarly, the NOS states there is no discernable difference in the different types of calcium.

My GP is aware of the latest findings (this year?) about micro cracking of bone but she said it was a small study and more research is required. To me it beggars belief that this is the same message in the Harvard article to which you refer, dated 10 years ago! I can only assume and hope that suitable long term studies are currently ongoing, and we'll know the results at some point.

In my own case, I've had a dexascan (21 months ago) which showed osteoporosis of the spine and osteopenia of the hip, and my consultant says I have to wait for 15 months for another (I'm tempted to get one in the meantime privately) . In the meantime I've developed a spinal compression fracture. I was on Alendronic Acid for 21 months from starting pred in February 2015 (stopped AA due to reflux issues). I was persuaded by my rheumy to try Risondrate, which I have been taking since June of this year, with no issues. I'm now wondering whether I've been taking bisphosphonates for long enough, given the risks.

Anyway, thank you for your detailed reply, and apologies to Mitziecat for hijacking the thread.

PMRpro
PMRproModerator
in reply to Ronnie101

If you have had a spinal compression fracture then the evidence is that you are someone who needs something more than exercise and supplements and that is a situation where even I would support taking something. But I think that you may possibly need Forteo - which actively builds bone unlike the other stuff.

Yes, more research is required - but the mounting evidence over several years now is that they aren't the blue eyed boys the manufacturer would have you believe. And in view of the various findings, they should be kept for when really required, not used "just in case" - until the current evidence is discredited. Which I suspect it won't...

Mitziecat
Mitziecat
in reply to PMRpro

I cannot prove that pred contributed to the Osteoporosis as they are other risk factors. Just have to try and manage it now I know. Like pmr, I tell myself that it is not life threatening. Other people dealing with much more and without options. Just have to get motivated andstop feeling sorry for my self. Good advice to myself but not easy. Was feeling pleased that I had stopped the AA and Omeprazole and tapered to low pred and s comes along.

HeronNS
HeronNS
in reply to Ronnie101

The weighted vest should be designed such that the hardest part is lifting it to put it on - once on it should feel like a hug, mine does. I read that calcium hydroxyapatite is better absorbed by people on pred. The issue with calcium carbonate is some people find it hard on the stomach, I did, and prefer calcium citrate. So there are reasons for the choices. Personally I would prefer to work hard on the natural way as the only side effect is going to be general overall better health, hopefully including the bones, rather than relying on medications which have so many strikes against them.

As for pred, I've found it has been very hard on me in subtle ways. I know it has aged me. But I had no "natural" alternative. With the bone medications I feel I do have a viable and effective alternative. 😊

Ronnie101
Ronnie101
in reply to HeronNS

Thanks HeronNS. To be clear, I'm all for the natural means of recovery, but as I said to PMRpro it is all very confusing and disturbing that the experts advise as they do. It's always easier to reach for a pill, but your experience is inspirational and gives us hope that there is an alternative and - when we can muster it - the drive to realise it.

HeronNS
HeronNS
in reply to Ronnie101

It's the modern way medicine is practised. I was at a medical appointment many years ago, in retrospect it was when I was plunging into an abyss of a midlife crisis, and I happened to mention how I was feeling. He promptly reached for his prescription pad and muttered something about how these days one didn't have to feel like that. Thankfully I had the sense to say no. I knew all I needed was something to abate loneliness, something to give me a sense of purpose now that my children were all in school, not a chemical fix for a perfectly normal although deeply distressing emotion.

So we go to the doctor with a diagnosis of thinning or fragile bones and they say we need a drug. Their first reaction is to reach for the prescription pad. But we are what we eat. If we eat to strengthen our bones (in the absence of any disease other than normal aging of course) then it's inevitable that our bones will become healthier. In the past it was reckoned we couldn't do anything about osteoporosis. Now we know better. But medical schools haven't caught up. They are still in the thrall of pharmaceuticals.

Here's another example, very recent. I've been suffering for several months with stiff painful shoulders, even restricted range of motion, and I know if I went to see my doctor without any suggestions of my own she would either say "I'm not worried about that" - her favourite remark to me if I ever raise a symptom - or a suggestion to take a painkiller. But I merely asked for a referral to a physiotherapist (so insurance will cover part of the cost) which she willingly gave me. I couldn't believe how much better I felt a couple of days after the first appointment. Would pills have done me as much good? No, instead they would eventually have done me harm, masking a symptom without dealing with the root cause.

I have no qualms about rejecting "authority" if I know from experience there is a better way.

Mitziecat
Mitziecat
in reply to HeronNS

I agree with HeronNS. I prefer to try alternative measures first and try to improve my overall health. Since pmr diagnosis I have not done as much as I could do due the symptoms, working and some fatigue. However, I know there has been times lately when I could have done more exercise and ate less junk like foods. All the things that are good for you always seem less enjoyable but will have to get use to it.

Mitziecat
Mitziecat
in reply to HeronNS

Hi. I have replied to another thread but I am in total agreement. Where do you obtain the weighted vests from and how long do you wear it for.? Presuming only while walking.

HeronNS
HeronNS
in reply to Mitziecat

hyperwear.com/blog/weight-v...

I ordered it directly from the company in Texas as, at least back in 2015, there were no Canadian suppliers. You can do a google search to see if it's distributed by anyone nearer where you live. It seems to be $200 US, On the other hand it will never wear out as I think some of the cheaper ones will, inevitably, because their weight packs will be bulkier and probably not be as immovable in the pouches as with the hypervest. The hypervest was developed for bodybuilders, hence its very comfortable and durable design, and then discovered by the osteoporosis crowd!

I have to confess I haven't worn mine this summer. I forget when I'm in the house, and it's been too hot to wear it outside - besides I'm self conscious and will only wear it under something else, like a sweater or jacket! It believe it's recommended to start with a short period of time and then work up to wearing it for hours each day, whether walking or just normal activity indoors or out. I wouldn't wear it if I also had to carry something else, groceries, for instance, or a picnic lunch and water in a backpack.

After you are used to the first weight you start with you can add a few ounces and wear it at that weight for a while, days, weeks, whatever, depends on your own situation. Then add a few more ounces, and so on. I started with five pounds because I was used to lugging that around in my backpack and have worked up to eight, but I could have got further along if I'd been more dedicated the last year. Must knuckle down and be more diligent this fall!

Mitziecat
Mitziecat
in reply to HeronNS

Thank you. Will google it to see if it can be obtained locally.

Mitziecat
Mitziecat
in reply to Ronnie101

It is very hard and difficult to know what would be best. Obviously doctors always go for medication first but instinct is to try natural measures. I agree that it is hard when you are in any pain or feeling tired. I am going to refuse AA due to jaw side effects. Just completed a course of antibiotics for an infection under a dental crown but pretty sure that it might need to be extracted in the future. If on AA I would stress about it and be anxious. This in turn is not good for my pmr so it becomes a vicious circle.

HeronNS is the person you are looking for, she is the person who vastly improved her scores with diet and some supplements. If you look at the top right of the screen you can put in a search or you could PM her.

Mitziecat
Mitziecat
in reply to CT-5012

Hi Thank you. Heron NS has given some good advice to my post.

CT-5012
CT-5012
in reply to Mitziecat

Good, there appears to be a lot of information out there, all good wishes.

Perhaps get in touch with the National Osteoporosis Society? Friends say they are extremely helpful x

Thank you Maisie1958. I will have a look at their website. Hope all is going well with you.

I managed to reverse a diagnosis of osteoporosis a few years ago before my PMR diagnosis. As an undiagnosed coeliac I wasn’t absorbing nutrients especially calcium. Rather than take bisohosphonates I took action myself by doing lots of exercise, especially walking and calcium supplements and importantly vitamin D to help with calcium absorption. I subscribe to a very good website saveourbones.com which gives lots of good tips and advice on food and exercise as well as the latest research. Now that I’m on pred I am a bit anxious about osteoporosis but keeping up with the exercise as much as possible. I can’t remember my T scores so can’t advise on yours. Best wishes and good luck

Mitziecat
Mitziecat
in reply to Casia

Thanks for your reply Casia. I will certainly look up the website. I am only on a minimal pred dose so unless It flares up, will try to improve my osteoporosis through natural methods. I was never prescribed calcium or vit D as my calcium level was high initially. I was taking my own supplements but told to stop. Ongoing blood tests was normal so no supplements advised. Now prescribed Adcal.

Hello. I would say the overall message I’ve picked up on this forum is that these drugs should not be given just in case and definitely not without a DEXA scan first. It also questions the prescribing of them as if they are a benign medication with very basic risk benefit analysis.

Mitziecat
Mitziecat
in reply to SnazzyD

Hi SnazzyD.

Thanks for your reply. I wish I had a scan in the beginning but was told it would be done later. In hindsight, I should have had one done privately but you never know how things will turn out.

My GP indicated that I could have had osteoporosis before pred as I am post menopausal and didn’t take HRT which is given to help protect the bones in menopause. However, I couldn’t take it and weathered the menopausal symptoms

I had Osteoporosis for 15 years before my PMR/ GCA diagnosis 9 months ago, I refused to take AA mainly because of the potential hidden side effect of osteonecrosis of the jaw after a tooth extraction. I instead opted for a drug deemed not to be as effective, started walking 25 to 40 km per week & started vibration training that was developed for the astronauts who lost bone density in space. And something worked as my bone density started to increase!

However it has now started to decrease ( that was pre prednisone) & I have decided to take the drugs (I take AA weekly rather than the infusion).

I too am against taking drugs, & consider myself lucky that I avoided the strong AA drug for so long.

You can buy the vibration machines to use at home, but I find the big commercial machines in gyms are better - if only because someone is there supervising - and makes me do it.

Berylholley
Berylholley
in reply to Janstr

Hi Janstr what do the vibration scans do?

Janstr
Janstr
in reply to Berylholley

Have a look at ncbi.nlm.nih.gov/pmc/articl...

There's quite a lot of other information on the net, some positive & some negative. All I can say us that something or the combination of things worked for me. I forgot to say that I also increased the amount of calcium in my diet.

Mitziecat
Mitziecat
in reply to Janstr

Thank you Janstr. There is so much information on the net it all becomes overwhelming. I have a good knowledge about Osteoporosis but just want to improve it without medication. My thinking would be different if I was on a high dose of pred but have been lucky with tapering to date. I am going to look at dietary measures. I use to do a lot of exercise pre pmr but not so during the 18 months of having the condition.

Janstr
Janstr
in reply to Mitziecat

Here is some information that you may be interested in that I copied off an earlier post on this forum.

...

I've just seen your question about vibration plates and bone health and I'd like to provide you with the answers you are after.

My name is Michael Smith and I was the Clinical and Regulatory officer for Power Plate, the largest fitness vibration company in the world for many years. I've since left them and am now the director of LivMD UK LTD which produces the medically focused "Marodyne" vibration platform. The only Low Intensity Vibration (LIV) in the world that is medically approved to treat low bone mineral density and osteoporosis, with no contra-indications.

A little bit on some questions you had:

** Astronauts - In a weightless environment astronauts experience around 15% - 20% loss of bone mass or bone mineral density a year, equivalent to 10 times that in a case of pronounced, untreated osteoporosis on earth. To put this in context, women affected by osteoporosis who remain untreated, can lose about 1.5% of their bone mass in the lumbar spinal region, in the hips or femoral neck within one year. An astronaut, by comparison, could lose this amount in a single month. Nasa was the primary contributor to Professor Clint Rubin’s (the world’s foremost expert on LIV and bone) research on LIV and helped developed the finished Marodyne device.

** Whole Body Vibration (WBV), Power Plates etc – WBV is primarily associated with fitness equipment (Power Plates etc) that you find in your gym, such as Bannatynes or Virgin Active. WBV main focus is activating and building muscle, something they do very well. However due to the very strong/aggressive nature of their vibration they are suited for people that are already in a reasonable state of health and fitness. They have a rather long list of contra-indications, the most relevant to you is that osteoporosis is a contra-indication of WBV.

** Low Intensity Vibration (LIV), Marodyne – LIV is targeted at bone health and bone growth. It’s focus is on stimulation of the Stem cells responsible for producing bone and re-activating them at the same time also increasing the activity of osteoblasts (bone building cells) and reducing the function of osteoclasts (bone removing cells). It does this with absolutely no contra-indications and is the only LIV device in the world medically approved to treat osteoporosis.

We launched Marodyne at the National Osteoporosis Conference last year to the medical market and are currently finalising our media launch to the consumer market later this month.

I am more than happy to answer any questions you may have, provide you with literature and give you a call for a chat. Please feel free to email me at

msmith@livmd.co.uk

Our primary website will be launched in 2 weeks, however our interim site is:

livdmd.co.uk

If anyone else on this thread also has questions please feel free to email me.

Best Regards,

MICHAEL SMITH

MANAGING DIRECTOR

LivMD UK & Éire

Email: msmith@livmd.co.uk

Website: livmd.co.uk

Hi Mitziecat I didn't want to take bisphonate and have persuaded my doctor to let me have Raloxifene. It is a Selective Estrogen Modulator. (SERMs) also called Evista. I had a bone scan and couldn't understand it and your T-scores have helped. Beryl

Hi

Glad you now understand your score as it can be confusing. I have a GP appointment tomorrow so will see what the recommendAtion is after looking at my risk factors. Thanks for your reply

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