The big decision : Here I am - yet... - Bone Health and O...

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The big decision

Here I am - yet another newly diagnosed dithering

A common story - referred for a DXA scan following a fractured wrist - said to be a fragility fracture but was it? (Knocked over with some force by a large, boisterous Labrador)

Scan results

head of femur-2.5

rest of hip readings in osteopenia range

spine -3

L1-4 all show osteoporosis

Needless to say, I have been strongly advised to start on Alendronic Acid straight away.

Like many of you, I am very reluctant to use medication. Even pain killers are only a last resort for me. Of course, the in depth research I’ve carried out recently has done nothing to reduce this reluctance.

The fragility Nurse Practitioner I saw yesterday said that my exercise regime and diet could not be improved (although she did not request a detailed analysis of what I eat) so in my case there is really no alternative to medication.

I don’t agree.

My preferred option is to watch and wait. This approach will require as much baseline information as I can get and a repeat scan in a year so that I can see whether the OP is progressing

All I know at present is what the scan results showed at two sites on a particular day. Have I had OP for many years with slow progression? Has it begun recently and is galloping away?

Have my scores in fact improved due to the increase in exercise over the last 4-5 years?

No one knows of course,

I would like to know if there is any evidence of vertebral fractures. I have had episodes of severe back pain and spasms in the past and still have recurrent back pain and fairly severe neck pain, especially associated with long periods of standing or with heavy lifting. My reading suggests that these symptoms could indicate vertebral fracture.

For this reason I asked the nurse practitioner about the advisability of a spinal X-ray. Her response was that as there was no clinical reason it would be inappropriate subject me to additional radiation. Does anyone have views?

Would a second opinion be advisable? My husband had suggested a referral to the Northern General in Sheffield, which is the International and is a short drive from our home in Derbyshire.

I cannot help but be disappointed about the casual way these potentially toxic drugs are prescribed.

No one suggested I should have blood tests for calcium and vitamin D deficiencies. (I have requested them and they have been carried out).

No one has advised me to have a dental check ( I have one scheduled)

Many of the side effects were trivialised by the nurse and others were not even mentioned.

It is only through my own online research that I have questioned the benefits of medication.

Is this a good thing?

Am I just over thinking the whole issue?

I have friends and acquaintances who have meekly obeyed “doctor’s orders “ and are happily taking Bisophonates, mostly (but not all) with no known side effects.

As you can tell by this long and rambling post, my head is full of queries, doubts and concerns. You’ve all been there - or are there now - I’m sure. Any ideas or comments would be very welcome.

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peaklander

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25 Replies

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HeronNS6 years ago

Do your research. Here is an account of my story, at least up to the last DXA scan a couple of years ago:

healthunlocked.com/pmrgcauk...

peaklander• in reply toHeronNS6 years ago

Thank you so much for that. Plenty to think about there and I certainly will do my research before making any big decisions.

HeronNS• in reply topeaklander6 years ago

rosw's reply reminded me of this:

americanbonehealth.org/bone...

peaklander• in reply toHeronNS6 years ago

Thank you - a few hours of homework ahead I think !

HeronNS• in reply topeaklander6 years ago

Looking for that link I discovered how much I've saved in my "osteoporosis" folder!

Congirl6 years ago

Hi peaklander, I had a wrist fracture last year and had a dexa scan at the Northern General. They also did blood tests. Very thorough.

My results went to my GP who said my results required me to take AA, my scores were similar to yours.

I was devastated by the news and did not want to take bone meds, but agreed to the calcium and d3.

I then asked if I could have a copy of my report. At the bottom of the report it said that my blood tests showed that I have primary hyperparathyroidism.

Last week I had a sestembibi scan to try and locate which parathyroid gland is causing me problems. The only cure for this is to have it removed.

My osteoporosis may not be caused totally by this condition, but hopefully my scores may recover slightly if I have it removed.

I have also asked to be prescribed HRT patches. Good luck with your research.

mollysuki6 years ago

You have a lot to think about. And as you say you can overthink these things. I’ve done both natural and meds. After several spinal fractures I’m now on Denosumab which will be for 10+ . For me it was a no brainer. I fear more fractures than possible side effects with the meds. I’m well aware of rebound fractures if I was to stop taking it-which I won’t. My consultant has applied to the CCG for me to go on Forsteo.

I think that you would find it helpful to talk to the nurses on the free helpline I think it would be helpful and useful to give the nurses a call on the free helpline at

theros.org.uk/

They’re so kind,caring and very knowledgeable about OP. I’ve found their advice to be invaluable. You have to make the decisions that are right for you and your life style. x

peaklander• in reply tomollysuki6 years ago

Thank you- yes, I think it would be useful to talk to the nurses. Although I’m very nervous about medication I haven’t ruled it out at this stage. Good luck with your medication - here’s to no more fractures! .

Maggie66 years ago

I can sympathise with you 100 per cent .I had nearly the exact same experience three years ago except I have never fractured anything. It was suggested I had a dexa scan because my mother had OP, but we presumed that was because of all the meds she had been on for many years. The first was Ok ,three years later my bones were thinning ( menopausal age ) then three years later I had osteoporosis in my spine and osteopenia in my hips.No advice, no blood tests suggested just meds prescribed..I actually had to go back and tell my GP that I shouldn't be given the meds until I had had blood tests) like you I wasn't happy about taking meds and looked for alternatives .My GPS reaction was to refer me to a rheumatologist.This took three months. In that time I went to see a nutritionist to see if I could improve my diet, started taking supliments , increased my weight bearing exercise, changed from using a handbag to a backpack and joined this forum.

At the hospital I found the consultant to be disinterested in what I had to say. Basically if I didn't want to take the meds in tablet form they could give me the same stuff in a transfusion. When I asked about my fracture risk I was told it was 10 per cent in the next ten years.Which means I have 90 per cent chance of no fractures.I should be going for my next dexa scan this year. I am going to see how I go. I will not say I will never take the meds but for me, at the moment it is too soon.

To finish with I have too older sisters. Both have fallen in the last ten years .... both have broken ankles and neither one of them has osteoporosis ?

peaklander• in reply toMaggie66 years ago

Thank you for taking the time to reply. Although I’m sorry to hear your experiences weren’t good it’s comforting to know there I’m not on my own. 90% chance of no fractures sounds pretty good to me. My odds aren’t quite as good but I’m still more likely not to fracture than to do so.

Nuthatch• in reply toMaggie65 years ago

Came across this just reading through the very interesting stuff on here. What is it with these consultants?! The one I saw (in Newcastle) the other day was the same. Zero interest in anything I wanted to say, wouldn’t give me a chance to ask about any of the medications offered and was just not very nice. The consultant I used to see at the same hospital for crohns (been in remission for years) couldn’t be more different. Asked about my family, always interested in what I was up to. Ah well. Nothing I can do about it!

veriterc6 years ago

You are right to ask questions. The problem is the NHS often doesn't have the funding to answer them properly. Forgive me asking, but would you be able to pay for a private consultation? If not, insist you are referred to an NHS consultant, and if possible ask for a double slot. It sounds as if your questions are sensible, but too involved for the nurse. Good luck, and if it is any help I had same problems - wrote about them on aftercancers.com

gerrirose6 years ago

Trust your instincts. And your own research.

sweetsusie6 years ago

I wouldn't take any of these bone meds...EVER! I tried Fosamax and the 2nd pill I took caused me to not be able to swallow...then my doctor wanted to put me on Reclast...research it..no thanks! All the rest are just as bad or worse, with Prolia being the worst, I believe. I'm on hormone replacement therapy to help build my bones and also for my hot flashes, etc. Please don't let them talk you into doing these drugs! You'll get much good advice on here as to diet, vitamins, exercises that will help your bones...

peaklander• in reply tosweetsusie6 years ago

Thank you for your reply. More food for thought. Your swallowing problem sounds horrible. The medics have assured me that this does not happen if the instructions for taking it are followed to the letter!?

I tend to agree with you about the medication but at this stage am trying to keep an open mind. I’m very well aware that there are people whose level of suffering from OP is horrendous and that the drug regime really is the only option open to them.

We are all different - I’m obviously a lot older than you (73) and apparently have a 40% chance of major osteoporotic fracture in the next 10 years. But hey, that means a 60% chance of NOT having one!

Who knows what my final decision will be? Certainly I have no wish to compromise the excellent health I’m lucky enough to have now, in order to avoid a statistical risk. Whatever decision I make I’ll be taking my time over it.

Here’s hoping you HRT will do the trick for you.

sweetsusie• in reply topeaklander6 years ago

peaklander - You're not much older than me as I am 71. I hope it goes well with you whatever you decide to do....

6 years ago

peaklander, may I ask, what if any specific, amount of calcium do you aim to have daily in your diet? You mention that Nurse Practitioner didn't ask you but said you couldn't improve your diet/exercise programme. How does she know that? I'm a similar age to you, I was prescribed and declined denosumab a year ago. My aim has been to improve my bdm through diet, making sure of 1000 calcium per day, oral spray vitamin D, Vitamin K2-4. My decision will be reviewed next week. I'm sure that I don't want to start Denosumab. I also have autoimmune conditions Secondary Sjogren's and PBC which predisposes to OP, and strong family history of OP. I had some spontaneous NOF fractures after chemoradiation 6 years ago, but no other for 4 years. I think I am in similar position to you with regard to OP treatment on offer "Not now, but maybe not ever". It's distressing, trying to reach the right decision. There's an element of gamble whatever I do and the potential loss, either way, is huge. I hope that we both can lose the anxiety and reach decisions that we are comfortable with

2019pro• in reply to6 years ago

May I inquire as to how your results were this time when you went? You are correct with the "gamble" … we appear to be in a spiral of decisions...

Best to you.

• in reply to2019pro6 years ago

2019pro - I haven't chased them up. I'm busy with improving my diet by introducing more fermented foods. I am s-l-o-w-l-y re-introducing fish, eggs, fermented dairy to my diet. It takes patience because I have some absorption and gut-transit issues that need careful management. I feel much stronger for having made a decision and I am completely invested in making it go as well as can be. The new understanding I reached in the process was that a doctor of medicine will prescribe medicine! It does sound obvious put that simply, but if I had a belief lurking round that a doctor would agree with me that it's a good idea to go against their advice, that belief is gone, and good job too! How are you doing with your dilemma?

Sunseaandsand6 years ago

Hi,

Can I ask how your 40% risk of fracture in the next 10 years was derived?

Sunseaandsand6 years ago

Hi,

I've been under the Northern General for 15 years. They are very good at diagnosis, which is not the case at my local hospital.

They do seem keen to promote medication and offer excellent support but ifyou do not want to go on treatment then you're on your own as after all it is there job to build bone and prevent fractures.

My experience of the nurses (and doctors) is that they do dismiss your side effects even if they are listed in the patient information leaflet.

The nurses at the ROS helpline however, are very knowledgeable and do not rush you when you call. Until I found this site, they were my lifeline.

You talk about back and neck pain with spasms,

I also suffer with these problems but in

addition to 4 spinal fractures I have oesteoarthritis of the spine and it effects the whole of the spine.

In my own personal experience fractures cause horrific pain and I have not been able to move a fraction of an inch with every one of them.

I am sure if you had a fracture you would certainly know about it.

You say your friends are having AA and doing well on it without side effects that is excellent news to hear.

What you decide to do is a very personal choice and made more difficult by reading others negative experiences.Please remember that no two people are the same and what works for one may not work for the other.

I have experienced both sides of the coin, I have not tolerated the treatments well and had numerous side effects, but I have also suffered 4 spinal fractures and know the pain and disability that comes with them.

If you take anything away from this it is that if you decide to go on the treatment then stay on it because in my experience bone loss is worse after stopping.

Please let me know your decision once you have made it and my best wishes go with you.

peaklander6 years ago

Thank you for replying. The 40% risk of fractures was derived from the FRAX assessment tool - but when I repeated it it came out at a more optimistic report so - 34% - so I guess I made a mistake with my responses. Gives me a bit of good news anyway!

Your comments are all helpful and I’ll certainly report back here once I’ve made up my mind. We’re going away next month to celebrate our Gokden Wedding Anniversary - so I don’t plan on making a final decision, and certainly on starting any medication, until after that.

xA-A-Ax6 years ago

These threads both comfort me and terrify me. I'm 26 and already have worse scores. Having read countless horror stories about the available meds and being highly cautious about the way they work, I am adamant I want to steer clear as long as possible. But it is terrifying, especially when you start experiencing pain. I wish I could offer something useful, but at least you know you're not alone.

peaklander• in reply toxA-A-Ax6 years ago

It is indeed of some comfort to know that we are most certainly not alone.

My heart goes out to you. To be facing this at your age is horrendous. The only good thing might be that you are likely to have time to benefit from future advances in medication. Surely a treatment will be developed that works in a safer and more effective way. . In the meantime. I send my good wishes. Are you trying the natural lifestyle approach? Do take care of yourself as much as you can.

xA-A-Ax• in reply topeaklander6 years ago

Thank you. I do hope there'll be advances in my lifetime... It seems normal – or at least standard – to lose bone density later in life, and the idea of that happening when I'm starting out this low is so frightening. Yes, I'm just taking the natural approach at the moment. Trying to make sure I'm getting everything I need nutrition wise and exploring different weight-bearing exercises. There are days I can forget about it and others it's all I can think about. It's horrible not being able to see if what you're doing each day is making a difference.