Alendronic Acid

[Booge_15]

I wondered if there is a suggestion on how long one should take Alendronic Acid. I started when i was about 64 ( I am now 79). I worked as a nurse in the interventional Radiology department and when the new dexa scan arrived all females working were able to have a scan to give a little more experience to the radiographers who had been trained in this work. I discoverd that I had osteopenia which went on to become osteoporosis . I carried on with the Alendronic acid when I first developed PMR . I was able to have another scan and it was no better. I have to admit that when Pmr 'disappeared' do did my taking of Alendronic acid.

PMRcame back during lockdown and I was started on pred again so I was a bit more diligent and then started again on Alendronic acid. As before I manage my PMR myself as my GP is not that interested ( I picked up all my advice and knowledge when helping with the admin at PMRGCA South West.)

I asked for a dexa scan to see what was 'going' on but was told no I was too old.( I was 78). So am I correct in thinking I can just go on taking it ad finitum. Many thanks for reading my ramblings.

[DorsetLady PMRGCAuk volunteer]

It should be reviewed every 5 years -and usual its advised to take a break for a while at that time. Then maybe return to it, or go on a different drug if necessary.

this is from ROS -

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Would suggest you speak to a ROS specialist nurse -have a look at this -

theros.org.uk/information-a...

[PMRpro Ambassador]

It was marketed that way I think - give it your elderly patients and they will never risk a broken hip again. In recent years studies have found that it isn't quite that simple, after a long period of use the type of bone created becomes more porous and develops cracks so the bone becomes weaker and susceptible to atypical fractures - exactly the opposite of the desired effect. It has been recommended there be drug holidays every few years, some say as often as every 3 years. How they regard long term use I don't know.

This is the work that found the evidence of the microcracks

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

ROS still supports their APPROPRIATE use with monitoring. But whether that covers use over 15+ years I don't know. You would have to ask them. I do know of one lady in her 80s who still played tennis who developed spinal fractures after several years of AA. There were repaired with vertebroplasty and she was back playing the following year. But she said to her surgeon, what about all those years of AA? He said - obviously didn't do what it was supposed to,

[Booge_15 in reply to PMRpro]

Thank you so much i will read through the links you have suggested. I am a bit lax with treating myself. - A bit of a nurse thing! I have to admit that I have broken my arm twice in the last two years. - Tripping over pavements, so a legitiment reason!

[PMRpro Ambassador in reply to Booge_15]

Maybe - but falling onto an outstretched arm is pretty likely to break anyone's arm!!!

[Suffererc in reply to PMRpro]

I read something in the last PMRGCAuk mag written by Sarah Mackie. Not verbatim ‘ why are so many patients wary of taking AA’

Is it perhaps because many GPS don’t bother much with PMR patients and never check out the concerns 😞

[PMRpro Ambassador in reply to Suffererc]

We think poor communication and assumption that because they say it, the patient will do it without understanding why. A lot of the public have realised GPs have tick boxes to earn bonuses with preventative/public health concerns from the government. That they rank alongside bankers and other fat cat bonuses - as opposed to funding for providing these services - and are suspicious. One GP handed it out to me on automatic. I did my research and saw a different GP who agreed with me. In fact, I haven't needed it. But the dexascan cover is rather patchy and never well explained. And patients really don't like going from nothing to 5 or more medications in the space of weeks, sometimes even days.

[piglette]

As DorsetLady says 5 years before having a rest. A friend had been on AA for 13 years so I suggested she talk to her GP who had not checked what she was taking it seems. Anyway they told her to stop.

[Animalover65]

Hi, what is the reasoning regarding being 'too old , for a dexa scan.? I s it funding? I looked up the cost of going private and if I remember rightly it around £200.

I am thinking about altenatives to AA after taking it for 18months for Osteopina of the hip. There seems to be lots of conflicting evidence about its effectiveness.

[PMRpro Ambassador in reply to Animalover65]

Funding and availability - shortage of scanners. It is assumed that everybody over whatever the cut off age is has osteopenia so that should be stopped from progressing to osteoporosis.

Private cost depends where you are - some are cheaper if NHS scanners also offer a self-pay service. Southampton charges £100 for example.

uhs.nhs.uk/departments/rheu...

Lot of politics. My husband needed a new scanner to replace a very elderly one in his department. A charity was ready to put up the capital cost - but the local Trust CEO said no unless they paid the maintenance and technical support which wasn't going to happen, It was also already covered in the annual departmental budget. Said CEO was later caught with his hand not only in the till but in the bank account!

Here where I live they are done by a private hospital that charges a whole 37 euros - not covered by the local healthcare system bit at that price, who cares! Oh - and you have to get there. Free if you have the Mobility Card which most over 65s do.

[Booge_15 in reply to PMRpro]

Thank you For your reply. Always words of wisdom . I have decided to see another GP in my practice who, when Pmr returned during covid, was very good . Even though I am managing on my own reducing at a baby snail pace it will be good to have a bit of reassurance. I cannot find the group I belonged to before which was PMRGCASouth West . I don’t think I need a dexa scan now though as st 79 what is it going to tell me. It was just that I was a bit taken aback when I asked last year that I was told “ oh you are too old” . There are more pressing things in the world that my PMR. I am pulling myself together - I am one of the lucky ones- when I was young 79 was ancient!!! I still look out on the world with my 35 yr old self

[PMRpro Ambassador in reply to Booge_15]

pmrgca.org.uk/get-support/g...

lists all the current support groups. None of the groups calls themselves that now - where did you meet?

Yes - my brain thinks I'm still in my 20s. Unfortunately the body hasn't received the memo ...

[DorsetLady PMRGCAuk volunteer in reply to Booge_15]

Try following for local groups -

[e-mail]

[e-mail]

[e-mail]

.. or ring main charity - 03009995090

[PMRpro Ambassador in reply to DorsetLady]

Why do they appear as links in the email but not here?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

See reply to Booge_15 . I use BT Mail -not iPhone one, so have to copy and paste as link doesn’t work for me anyway…

[PMRpro Ambassador in reply to DorsetLady]

How strange - that isn't on the phone, the email notifications are from my gmail account.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Another HU/IT quirk!!

[PMRpro Ambassador in reply to DorsetLady]

Probably ...

[Booge_15 in reply to DorsetLady]

Thank you - didnt think of that! I did the admin side oh things fir about 4/5yrs but of course left when my PMR abated as I had other committees that I was tied up with. Thank you

[DorsetLady PMRGCAuk volunteer]

As per PMRpro‘s comment-

Full details can be accessed if you scroll down through each group’s info on charity page -I just copied the initial info… listed alphabetically -

pmrgca.org.uk/get-support/g...

[Orange_2022]

As Dorset Lady suggests I really recommend a call to the Royal Osteoporosis Society. I called them about Alendronic Acid before starting to take it (my Dexa scan was at higher end of osteopenia) and the nurse was so helpful and reassuring. There seem to be a lot of factors involved.

They have some great advice on their site about exercise etc. for osteoporosis too.

[Sharitone]

I don't really rate Dexa scans anymore. My scores are only in the osteopaenia range, and yet I have 3 recent spinal fractures. The rheumatologist said it was osteoporosis, despite the Dexa result.

[HeronNS in reply to Sharitone]

I don't know if you've been investigated for "secondary causes of osteoporosis"? Here's an article:

osteoporosis.ca/medical-con...

[HeronNS]

So sorry this has happened to you. The reason longterm use of bone meds, specifially in your case bisphosphonates, is turning out to be counterproductive is because they inhibit the normal turnover of bone cells. Because old cells are no longer being removed the new ones are deposited on an increasingly aging matrix, which eventually, as PMRpro pointed out, becomes brittle.

Starting before we reach middle age we should all be told what to do to keep our bones healthy, much as we are taught about effects of smoking, how to avoid developing type 2 diabetes, the signs of stroke or heart attack, the benefits of exercise. Do we learn about our skeleton, on which everything else hangs? No. In fact I bet few of us spare it a thought unless we develop arthritis or find out we have already got significant bone thinning.

I don't think it's ever too late to do some of the so-called natural things which can improve our bone health. E.g. healthunlocked.com/pmrgcauk...

Of course you mustn't do any new-to-you exercises except what a knowledgeable physiotherapist who understands osteoporosis prescribes for you.

[powerwalk in reply to HeronNS]

HeronNS, are your markings still good for osteoporosis? Did your bones stay good? Ive just tipped into osteoporosis in the lumbar region and im up the walls as they say, rheumy wants me to start Prolia but im not at all happy.

[HeronNS in reply to powerwalk]

I haven't had another DXA scan since my second one. However, given what a klutz I am, it's a good sign I'm still in one piece! I still take my K2, do my exercises, walk a fair amount, etc. Probably I'd have had one a few years ago, but pandemic got in the way, and as I would likely not agree to medication unless I started to break bones it seems pointless for me to use limited medical resources, but that is my decision. I'm sure my doctor would, based on my age, agree to a DXA scan if I asked. Otoh I've been on a wait lists to have a stress trest and see a cardiologist since June '22 so have little interest in getting onto any other wait list! (One of the heart investigations, almost exactly a year ago, revealed aortic regurgitation 🤷)

[powerwalk in reply to HeronNS]

Oh thats a long wait. Hope its all ok. I know simetimes ignorance is bliss... til it isnt!!! The joys.

[HeronNS in reply to powerwalk]

In the context of the modern world I think a rapid departure via failed heart is second only to passing away quietly in one's sleep! But I'd like to have a better idea where I stand and what to expect.

[powerwalk in reply to HeronNS]

Absolutely. All the best with this. X