Just diagnosed with Osteoporosis - really upset

[Wishimaywishimight]

For context I am a 54 year old female with a strong family history of osteoporosis - mum, grandmother and sister, so this should not be a great shock but it has really upset me. Having a Dexa scan has been on my 'to do' list since before Covid (from when I turned 50 I suppose) but I only got around to it now and I am kicking myself - could I have prevented this?

The report shows Osteoporosis (-3.3) in my Spine L2 which is really bad numbers wise I think? Also osteopenia in other parts of the spine and in both hips. I am terrified of what this means.

I have a doctor's appointment this afternoon to discuss treatment.

Can anyone offer any advice or words of reassurance? Can I improve this or is it just a matter of trying to slow down the progress?

Hi @Cumbercat That's what I am telling myself over and over - I am really lucky to have the diagnosis before anything worse could happen so that I can (hopefully) do something about it.

Between drugs and injections it does seem, at least, that there are things that can be done and I am not condemned to a lifetime of falls, fractures, shrinking (I'm only 5ft 3ins to start with!!) and a hunch in my back - these are my 'panicking' fears right now but they are being lessened considerably by the very kind, and very welcome, responses here.

I am so grateful to you all this morning, you have helped a worried woman pull herself together.

I have osteoporosis and I'm 34, apart from my foot breaking sometimes when I step wrong it hasn't stopped me trying to keep active. I've had it for 5 years due to prolonged steroid use and since taking vitamin D over the last few years its slightly improved.
Your GP will probably prescribe you vitamin D or Alendronate.

My advice would be to keep active (swimming, yoga etc) and have a good diet for your bones (calcium, vitamin D rich foods).

Thank you @Alargeoneplease89 You were so so young, I am glad to hear you are (largely) living well with it despite the fractures.

Once I have spoken to the GP and have a plan in place I will absolutely be overhauling my diet and exercise plans so that I can manage things as well as possible.

A minor point perhaps but we are self building a new house and although we have room for a bungalow we are making it 2 storey so it's a bit of extra exercise in our old age! The slight impact on the bones coming downstairs is said to be beneficial.

@Wishimaywishimight problem is when people get diagnosed with an illness they are quick to give up on exercise. I have been through alot worse (multiple organ failure due to immune system disease) and exercise had been fundamental in clawing back some normality in my life.

I hope you get a good plan in place and your condition remains manageable for many years. If it runs through your family how have they been affected/treated?

@TeaAndStrumpets My reading this morning does say that walking up and downstairs is beneficial! Thankfully I already live in a house with stairs 😀

@Alargeoneplease89 I am so sorry to hear what you have been through, and at such a young age.

With regard to exercise, this has only strengthened (pardon the pun) my desire to stay fit and healthy. Once I know what exercise is best I promise I will be doing this! I am wondering is there any value in getting advice on an exercise programme with a physiotherapist perhaps? Has anyone done this?

My sister has osteopenia / borderline osteoporosis and takes something called Bonviva. My mother has had 2 breaks, her femur and her shoulder however she has recovered brilliantly from both (both within the last 3 - 4 years). She is currently taking some sort of injection every day but will be finished with this soon and will be going back on (I think) either a yearly or 6-monthly injection. She walks every day and does some other gentle exercises which the hospital have given her (she attends a "Falls" clinic) and is doing great thankfully.

I was diagnosed with osteoporosis in my lower spine at 40 & osteopenia everywhere else they scanned due to long term steroid use. I was given calcium and vitamin d to take and just get regular scans.

I was also recommended where possible to do some kind of weight/resistance training which I’m told can help improve strength and stability resulting in fewer breaks. There are
medications for bad osteoporosis and if your GP hasn’t suggested this then you’ll be ok with calcium and regular checks.

@Wishimaywishimight

I have only been diagnosed with osteopenia. My doctor said it's given us the chance to prevent it worsening which is why I mentioned prevention not cure.

Treatment for osteoporosis will be different & I have no experience of this.
As PPs have said, there are successful ways of both halting its progression & improving your condition.

Best of luck this afternoon.

DH was diagnosed at around 50. It was a shock to him, despite a strong family history - his mum, his gran and his uncle all have it too.

He's been taking the medication (weekly) very consistently and the rhuematologist is pleased with his stable figures.

I totally agree that while it's a distressing diagnosis, it's much better than finding out too late. DHs mum was never one to go to the Dr for anything - I think she believed she could keep illness at bay through sheer force of will. Sadly she was diagnosed far, far too late. We live overseas, and were horrified at the difference from one year to the next - FIL and SIL didn't seem to see it as for them it was gradual! By the time she was diagnosed, she was also struggling with memory problems, and wasn't able to take the medication correctly / FIL didn't prompt her as he didn't understand how important it was. And she was just too weak / unmotivated to do any of the exercises from the physio. It's a lost cause now, it was far too late to do anything about by the time it was taken seriously.

So yes, it's good that you know now.

@alpenguin Seeing the doc shortly. The Dexa report recommends "pharmacological treatment" so I'm assuming I will need either medication or injections.

@MenopauseSucks Thank you. I will update later for anyone in the same / similar boats!

@ForthegracegoI Yes, absolutely. Obviously I wish I didn't have it and that my bones were strong and healthy but at the same time it could be a lot worse so I will be doing everything I can to keep things stable.

Have you had your vitamin D level checked? I was diagnosed with osteopenia in 2019 and low vitamin D level. I think it was around around 25 nmol/l and I was advised to try and get it above 75 nmol/l. I started taking 20,000 iu per week (5 x 4,000 iu) which got my vit D up to over 75 nmol/l within about 3 months. At my next Dexa scan there had been significant improvement in my bone density at all sites.

As a nice side effect my nails are much, much stronger and rarely break these days. With hindsight I think I must have been vit D deficient for years.

For those on HRT can I ask whether you're on it solely for this reason? I'm fairly sure I'm perimenopausal but with few symptoms and my GP has said that protecting bone density isn't a good enough reason for starting HRT. I'm a bit dubious about that tbh.

Don't panic .... most people your age have a degree of osteoporosis. I have known about mine for years and have denosumab injection every 6 months and daily calcium and vit D. I have had fractures, but due to trauma that would have broken anyone's bones so not necessarily osteoporosis related. There is an Osteoporosis Society with lots of online info and a helpline.

@Reallybadidea I haven't had my vitamin D checked in about 4 or 5 years. I'm so glad you reaped the benefits of it, hopefully I will see the same sort of improvement.

@Mischance The doc today mentioned 6 monthly injections (see below update). I'm sorry to hear about your fractures though, I hope you are well now.

Well, update: I had a good chat with the doctor who was very reassuring. I guess she could see I was feeling a little upset and repeated several times that "it's really not bad" and that I shouldn't be so worried.

She is sending me for a blood test to check calcium and Vitamin D levels and has started me on Calcichew straightaway. Once the bloods are back we will have another chat and determine which of 2 options I want to go for - a drug (bi-something - some PPs mentioned this earlier) which I would take once a week or an injection every 6 months. She said she would likely be recommending the drug given that I am young (her words not mine!!), otherwise in good health and not on any medications. I will do some research before deciding.

I asked if the treatment is just to slow the progress of the disease and she said "not at all", that the aim is to improve things and then repeat the DEXA in a year or so.

I asked about exercise and if there is anything I should avoid and she said absolutely not, that exercise is very beneficial. I intend to up my walking and review my other exercises as I see from reading this morning that anything that involves bending at the waist or twisting at the waist, is to be avoided.

I did wonder (aloud) if a consultation with a physiotherapist would be a good idea and she laughed and said she had just been about to suggest this so I am going to do this also, just for advice on movement and exercise.

All in all, while still a bit upset, I am feeling much better about things. I told my mum who was a little upset but only because she could hear in my voice that I was but she is fantastically practical, told me it has never stopped her doing anything in her life, that she never gives it a second thought and reminded me that she didn't even have a diagnosis until late 60s so it's good that I have caught this now and can hopefully prevent it from getting worse.

Thanks to all of you for responding to my (slightly panicked) post, I am honestly very appreciative!

wishimay that sounds like a good consultation!

@TTeaAndStrumpets It was, I feel a lot better and my mum is taking me out for dinner later to cheer me up 😄

I had osteopenia picked up at an x-ray for something else (later confirmed by a dexa scan) so I do think it's probably more common than most people realise. I take the chewy vit D / calcium tablets - but I'm sure there's been a scare about those now being linked to blocking arteries. I know my mil has been told to now only take one per day.

Also just diagnosed . Back fracture, lost job and dexa scan at minus 3.5. Given alendronic acid. Calcium and vit d. Told will live a normal life. Stay physical but no heavy lifting. The society of osteoporosis spent an hour on the phone to me as was upset. They were incredible and examined all. Feeling much more positive now. You've got this , it's very common. We will be OK. ❤❤

I was diagnosed with osteopenia at the age of 50 after I requested a DEXA scan. I did this after researching the bad effects of not having any treatment for my early menopause at age 40. My GP would not prescribe HRT when I went into menopause so had no hormones for 10 years.

The initial scan showed mild osteopenia and I was given vitamin D and calcium supplements. Two years later my scan showed no improvement. At that point I started on HRT and two years later my bone density was normal.

If you are in menopause/ peri menopause the best thing you can do for your bone density is go on HRT.

I’m reviving this thread as just had my dexa scan results back showing osteoporosis and osteopenia. I’d fractured my wrist.
its reassuring to read that people have been told bad results can be improved.
Just wondering if there is any other advice / reassurance out there?

@IsawwhatIsaw Just seeing your post in my 'I'm on' posts!

I'm sorry to hear of your diagnosis, I know it's scary, particularly as you have had a fracture.

I can't offer any advice other that what is set out in the thread, only to say that, almost a year on, I am feeling much better about the diagnosis and rarely give it a thought these days.

I have been on Alendronic Acid (one tablet per week) since last September, absolutely no side effects. It was strongly recommended by my GP and I was happy to take her advice.

I exercise most mornings, varying weights with some cardio and pilates. I walk at lunchtime, do some skipping in the evenings and run up and downstairs regularly (5 times maybe 4 times a day). My GP tells me that 'shocking' or 'jarring' the bones is what is needed and is more useful than just walking. I also saw a physiotherapist a few times who showed me some exercises to help with balance as the aim is really to prevent falls. In this regard I also now have a balance board which I use daily for a few minutes at a time.

All in all I feel great and, other than avoiding some movements i.e. flexing of the spine, curving the spine to do sit ups, lifting heaving weights etc, it really does not impact my life at all.

I will be going back for a repeat DEXA at some stage in the next few months so hoping things have improved or at least remained stable!

I have it too. Broken back in 4 places. Back Dept at hospital fobbed me off telling me osteoporosis was making me unable to walk more than a few steps for more than a year.

Hi. Only just seen your post I was diagnosed with severe Osteoporosis Oct 23 . I had dexa scan and now just had a yearly infusion of zolendronic acid. Made me poorly for 2 weeks but its yearly. Also on calcium, vit D and magnesium and resistance bands training. I live a normal life where I can just need a job with no heavy lifting. They found from a back fracture from lifting a baby. Hope you are doing OK. Try not to be scared and I'm hoping the infusions will turn my t scores around. If the Dr prescribes you alendronic acid and you don't get on with it ask to be referred to a rheumatologist. The Royal Osteoporosis Society are amazing and have specialist nurse helplines. They've helped me so much ❤

Thank you so much for taking the time to respond. That all sounds positive, which is good to hear.
i think the issue is I wasn’t able to get an appointment to see a GP, but have an appointment now for Friday. Going online and reading a few depressing stories in the meantime didn’t help…

@Rainylou thanks for sharing your story , your advice about the Osteoporosis helpline and maybe talking to rheumatologists is helpful. Glad you are getting the support you need to get on with your life now

I’d heard other stories of people being fobbed off and given wrong advice… hope you found decent advice elsewhere?