Osteopenia

[Barberdiane]

So after being diagnosed with Osteoporosis after dr got my mri report, I was sent for a dexa scan, the scan was much better than expected and the dr says it’s not Osteoporosis but Osteopenia, so I have a better chance now of reversing it slightly and will have another dexa scan in 2 years. My dr has just rung me again (only 2 days since she rang with the above information) to say she decided to consult rheumatology who want me, because of the amount of fractures I have in my back, to start Alendronic Acid, I’m not sure what I think about this, I’m having more bloods & urine tests done just to check they’ve not missed anything. Any views either way on Alendronic Avid please??!! Thanks xx

[Met00]

Although your DEXA scan showed scores in the osteopenia range, the fact that you've had fractures in your back normally means that the diagnosis is still osteoporosis, with a high risk of further fractures. Osteoporosis is so common, it's beyond me why GPs don't even understand the basics! As far as Alendronic Acid is concerned, it has been shown to stop further fractures for some people who've already fractured, though it's not guaranteed. That's good that they're doing further tests, because they do need to check for underlying causes before starting any osteoporosis meds, as there may be something else treatable that's causing the low bone density. If the recommendation after that is that you should take the Alendronic Acid, the decision has to be yours. Lots of people get on fine with it, but like any medication, some people get side effects. According to the patient information leaflet, the most common side effects can affect more than 1 in 10 people, but that still means nearly 90% of people don't get them. At least with AA you can stop it if you don't get on with it. Just be aware that if you're ever offered Prolia, if you stop that, you need to go straight on to another osteoporosis med, usually AA, to reduce the risk of rebound fractures!

[Barberdiane in reply to Met00]

Thank you for that, yes I’m pleased they are doing more bloods to dog the i’s and cross the t’s

[PamJCam]

My experience of alendronic acid is not good I’m afraid... after taking it for just over a year it gave me a hiatus hernia which is now with me for life😢 I stuck rigidly to the directions for taking this medication but it still gave me the hernia. I’ve now been given the option of having it intravenously but I’m really not sure I want a year’s worth of drugs pumped into me all at once...🤔🤔🤔

[Barberdiane in reply to PamJCam]

You see this is what worries me as I always have gaviscon at the ready, I can go months and not use it but I’m now on omeprazole but I just don’t like the idea of more meds, I have a friend who’s a nurse and says her mum was offered it but flat out refused it which says a lot as her mum was a nurse and matron /sister all her working life!!!

[PamJCam in reply to Barberdiane]

Wow that says something... I already have PMR and osteoporosis as well as now having the hernia so I’m very reticent about more drugs😢 good luck👍

[Met00 in reply to Barberdiane]

Unfortunately gaviscon and omeprazole taken long-term can damage the bones, so it would be better if you could find out what's causing your digestive issues and treat the root cause (for example, through diet). As someone with IBS, I do fully understand how difficult that can be!

[AnnieW55 in reply to Barberdiane]

Gaviscon: are you taking that for “high” or low stomach acid? Only asking as I was taking ranatidine very intermittently for years as GP diagnosed too much stomach acid and repeated tests ruled out PyloriH. I found out a year or so ago that low acid is also a thing but not really well recognised. The “cure” for that can be Apple Cider Vinegar before each meal. I bought a bottle of the cloudy kind with the Mother in it and after a couple of days I was fine. Since having it on hand (tablets) in the cupboard ready I have only had to use it a couple of times.

I did take AA for a few weeks but had eye problems and so stopped. I am due my 2nd DEXA a week tomorrow and will view the results with both interest and a squint as I believe this scan is not totally accurate - to be used as a guide.

[Barberdiane in reply to AnnieW55]

I take omeprazole due to pain killers Naproxen and Tramadol, what kind of eye problems and were they caused by the AA?

[AnnieW55 in reply to Barberdiane]

Yes, caused by the AA. I had a DEXA which gave an osteopaenia result. Shortly afterwards I broke my hip whilst running a marathon (spontaneous, no fall) and had it pinned back together. The AA was in a bag with lots of other medications and not knowing any different I took everything as prescribed. It was only as I got home to recuperate I started to investigate osteopaenia/porosis and I think it was after the second or third week I realised my vision was deteriorating and my eyes hurt. Thankfully it returned to normal after stopping the AA.

The link below gives info on what and how to take along with the various side effects.

nhs.uk/medicines/alendronic...

[Barberdiane in reply to AnnieW55]

Oh my goodness , they don’t tell us these things do they?.

[AnnieW55 in reply to Barberdiane]

No they don’t which is why we have to do our research. Our GPs are often not experts in this field (General Practitioner is the clue) if we have one who is we are very lucky - I’m meaning no disrespect with that comment.

I am also on this forum which is an American one but there is lots of information on there plus one of the posters is a very experienced and highly qualified DEXA technician.

inspire.com/groups/national...

[Dogsandme]

No. Just no.

[Barberdiane in reply to Dogsandme]

No don’t take it?! And why, I’m so interested in everyone’s stories so I can make a decision

[Nuthatch]

Sorry to hear about your fractures though it sounds as though your bone density isn’t too bad overall. I have osteoporosis with 5 compression fractures. I think the fractures occurred because my GP insisted I just had mechanical low back pain for months..

I was referred to the metabolic bone clinic and after long discussion with the consultant and my own research I was prescribed Terrosa. The consultant agreed I should not take an oral bisphosphonate - I get heartburn quite badly and I also have crohns. Once I’ve had the 2 years of Terrosa I’ll have to take something else but I’ll wait and see what’s available then - not that anyone seems to be bothering researching or developing new drugs for OP 🙄

See what rheumatology say - they may be able to suggest alternatives. And definitely do your own research. I agree with all those who say GPs don’t know much about OP - mine have been useless. They just push the cheap option which is alendronate.

And maybe ask if you can see a physio who specialises in OP with existing fractures. I had an appointment to see the bone clinic physio on the day lockdown started - so that never happened. I’ve tried to work out my own exercise routine using the ROS fact sheets but I’d definitely benefit from seeing someone face to face. It’s expensive to go private and it’s very important to find someone who understands OP or they will give you inappropriate exercises to do!

The ROS is good and the nurses on the helpline are very helpful. They are very conventional so you might want to check out some of the many posts here about alternatives, though with existing fractures I am happy to take the prescribed medication.

Good luck!

[Barberdiane]

Thank you, I’m meant to collect my prescription today but thinking of ringing surgery to arrange a phone discussion with my gp to see if I really have to go on the Alendronic, my gp hadn’t mentioned going on it until rheumatology suggested it, i haven’t even got full blown osteoporosis yet!

[Nilsam]

I was diagnosed with Osteopenia 17 years ago and prescribed Alendronic Acid. I had no side effects and only this year had one more wrist break. I have had another bone scan and it has not got worse. It is now said that I should have a medication holiday of 2 years (apparently it is recommended now to only take for 10 years...I am trying to find out why.) So good luck. I hope you have the same good experience. Don't be too put off by the scare stories. 🤞👍🏼🙋🏻‍♀️

[Barberdiane in reply to Nilsam]

Thank you so much, you have made me feel so much better about taking it, I spoke to the nurse yesterday & she said it’s to strengthen the bones so why wouldn’t I take it? Thank you, you’ve done your good deed for the day!!! Xx

[Nilsam in reply to Barberdiane]

That is so kind. I wish you well. 🧘🏼‍♀️🙋🏻‍♀️