Alendronic Acid - needed or not?

[pal-o-mine]

Hi to all you lovely, helpful people,

Wonder if someone can advise me. I am currently on 10mg of Prednisolone which I take after Omeprasol every morning. My doctor has also prescribed Alendronic Acid 70mg for me as a previous DEXA scan (2 years ago and no figures given to me at the time) showed my bones needed to be stronger - especially my lumber had got worse. From my latest DEXA, earlier this month, my doctor actually said that I have "strong bones" and gave me scores of T. -1.6, (I think this was lumber) and hip -1.5.

When I queried with him whether I still need to take the AA (as a lot of people are against taking it) he said he'd recommend me to take it for 2 years.

My question is; do you think I should ignore the doctor's advice and not take the AA any more (I haven't had any issues with it so far, but then I've only been taking it a month. I have taken it before, for 2 years, which ended in 2012) or should I continue with it as it's only for 2 years?

Also, are the DEXA scores he gave me a sign of strong bones, as he says, or do I need more help for them - as I really don't know?

Any advice would be gratefully received. Thanks.

[PMRpro Ambassador]

Whether you should or shouldn't take it isn't up to me to say - but those are dexascan t-scores that normally would be said to not require further treatment other than calcium and vit D. I would want a lot of discussion to justify it if it were me,

[pal-o-mine in reply to PMRpro]

Thank you for your reply PMRpro. I have been taking Evacal D3 1500mg/400 iu chewable tablets for ages now (2 a day). These combine calcium and vitamin D and I try to do a few weight-bearing exercises in the evenings, but having broken a bone in my hand 6 years ago, I'm not keen for that to happen again. I will have to think long and hard about this. I appreciate your advice.

[DorsetLady PMRGCAuk volunteer]

Do you have a copy of the DEXA scan report from the hospital…..that usually gives a recommendation. If not, ask for it.

I had taken AA for 4 years whilst on Pred, and latest DEXA was performed almost 4 years after I stopped …the recommendation was no treatment (ie. AA) required but to continue with the Calcium & VitaminD supplement.

[pal-o-mine in reply to DorsetLady]

Hi DorsetLady, thank you for your reply. I wasn't aware you can ask for a DEXA scan report from the hospital. I assume I would have to contact them direct for that?

[DorsetLady PMRGCAuk volunteer in reply to pal-o-mine]

They should send a copy to GP….ask the surgery for a copy… or if you have access to your records through SystmOnline, AirmidUK or NHS App you may be able to access it yourself…..depends on what your surgery allows you to see.

But you are entitled to see it.

[pal-o-mine in reply to DorsetLady]

I will have to go in and ask for it then. The doc (on the phone) did offer me the scores without being asked, but then seemed to not be too sure about what he was telling me. He sounded a bit distracted at the time, so not even sure he got them right. Will request them. Thanks for your help.

[DorsetLady PMRGCAuk volunteer in reply to pal-o-mine]

Forgot to say, this is what NHS says about AA -

“Once you stop taking alendronic acid, the effects of the medicine will gradually wear off. Your bones may continue to benefit for up to 5 years afterwards. The longer you take the medicine, the longer the effects will last.”…

So you may not be getting the benefits any more…

[pal-o-mine in reply to DorsetLady]

So, are you saying that I might need to keep taking them for the next 2 years in order to top up again?

[DorsetLady PMRGCAuk volunteer in reply to pal-o-mine]

Not necessarily….the Adcal-D3 may well be enough with your readings….

I was on GCA doses, so much higher than you are on, had an hysterectomy at 37, and was therefore more susceptible to osteoporosis than some, which is why I took it….in hindsight looking at readings at last DEXA I may not have need to take AA at all, but at the time of diagnosis and in my circumstances it seemed prudent, and it caused me no issues.

But as we always say, why take a medication if it’s not required, so as PMRpro says…check if you actually need it.

[pal-o-mine in reply to DorsetLady]

Sorry to hear about your problems - really puts mine into perspective. Thanks for the advice - will take it on board and speak to my gp again and will ask for a copy of the hospital DEXA scan. Whether I understand it or not is another issue

[PMRpro Ambassador in reply to pal-o-mine]

Mmmm - but we do!

[DorsetLady PMRGCAuk volunteer in reply to pal-o-mine]

Just ask!

[PMRpro Ambassador in reply to DorsetLady]

"The longer you take the medicine, the longer the effects will last."

Not after you stop taking it they won't - which is what is implied.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not my words guv ….from nhs site. 🤨

[PMRpro Ambassador in reply to DorsetLady]

Ah well - lot of strange comments on there if truth were told!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very true!

[Woodly]

I have taken AA for 6 years and it has never been suggested that I should stop. Actually taking it is the worst thing about it but it has caused no ill effects and was assured that it is beneficial.

[PMRpro Ambassador in reply to Woodly]

It is now recommended that it be taken for no more than 5 years at most before taking a "drug holiday" since long term use may lead to the formation of more porous bone with micocracks and therefore more brittle bone tissue.

Some authorities suggest 3 years maximum. It certainly shouldn't be taken indefinitely in view of research done and published in the last 5 years.

pubmed.ncbi.nlm.nih.gov/282...

I'm struggling to find references - all I have found are pre-2017 when it was still thought long term use of bisphosphonates was OK as the manufacturer claimed. It was already known that long term use could result in spontaneous atypical fractures but they were thought to be rare, Research at Imperial in London identified the microcracks - and changed the thoughts about how long to use the bisphosphonates. It is a different problem to the one now identified with Prolia/denosumab - where it is the discontinuation of the Prolia that results in problems unless bisphosphonates are started to maintain the bone density for the next couple of years.

[Woodly in reply to PMRpro]

I have just read this " If you're having long-term treatment with steroids, you'll usually take alendronic acid until your steroid treatment stops - maybe longer. "However, I will ask and thank you for raising the issue.

[PMRpro Ambassador in reply to Woodly]

Is that on the NHS site? The NHS is very tardy about updating information on their sites - Tim Spector was commenting that that on a recent video since they still list the three main symptoms for Covid which applied with the original version and is very out of date for the delta mutant. Temperature is in 7th place for reported symptoms with no mention of the primary symptoms now being found.

I have taken a total of 4 tablets of AA, rght at the start, After nearly 12 years on pred my dexascan readings have actually hardly changed and are still in the "satisfactory, no drug treatment required" range.

[pal-o-mine in reply to Woodly]

Thank you for that - it is reassuring to know that you have been on it for so long and not had any issues with it. Long may that be the case. I know what you mean tho, sitting or standing up for half an hour (I leave for about an hour; just in case) is a bit of a pain.

[Pixix]

There’s an excellentFAQ on this forum about Alendronic Acid which explains it really well. Um...you’ve had great replies here, but I still suggest checking the FAQs first! It will help the great people who help this forum! Thanks!

[pal-o-mine in reply to Pixix]

Point taken, thank you Pixix.

[Mistydawn]

Hi, your scores indicate your bones are in the osteopenia range. Have you had any fractures? Had you fractured before you started taking the AA? What were your scores before you started AA which you took for two years? How old are you? Just some questions to think about.

I would not take AA if my scores were in the Osteopenic range and I had not fractured but would review my exercise, lifestyle and diet ensuring a good balance of bone healthy nutrients are being consumed. What are your blood vitamin D levels like?

However, as you have already taken AA for two years and you are on steroid medication I am afraid I can’t help you with your decision as to whether to take AA or not.

You could still incorporate weight bearing exercises and bone healthily nutrient rich foods into your diet if you don’t already.

There are some bone healthy recipes on ushasveryown.com that may be of interest.

Good luck with whatever you decide

[pal-o-mine in reply to Mistydawn]

Thank you Mistydawn (I like your choice of name). I did break my 5th metacarpal by hitting a wall (didn't hit it hard by the way, just to steady myself from falling from a crouching position) This was 4 years after taking the first AA tabs. Don't know what my previous scores were I'm afraid (didn't think it would matter way back then). Thank you for the recipes link. Will be sure to check it out.

[Hidden]

With my doctor’s permission I am now taking calcium supplements 1200mg with Vitamin D3 as I didn’t want to take alendronic acid. I’m adding K2 to help absorption.

[pal-o-mine in reply to Hidden]

You're lucky your doctor gave you permission - mine seemed addament I needed AA and I didn't want to alienate him! Will have to look into K2 - is that on prescription only or can I get it over the counter?

[cycli in reply to pal-o-mine]

Here we go again. Why should we NOT alienate them if they are presumptuous enough to think they have control of our bodies. We process the drugs and feel the effects. They don't. What goes in my body I worry about. If they proscribed junk food I wouldn't take it. Same principle. The more we understand how what we consume affects us the more power we have to argue rationally. The problem is that all being different it isn't always possible to know ahead how we will react. However, once we do know and it isn't what should be then that is when the specialist comes in. About time they were told.

[pal-o-mine in reply to cycli]

Thanks for your reply. I know I should not let the doctor dictate what I take, which is why I have asked my question of the forum; to determine the opinion of the forum.

I don't want to alienate the person who is in charge of my medication, the same as I wouldn't want to upset my dentist just before she starts poking around in my mouth

with a drill 😲

[cycli in reply to pal-o-mine]

understand. Did the same with the rheumy I met this week. They would have to be off the scale but if so I would give them a proper talking to. The trouble is we allow them to continue this way because they aren't brought up short often enough and their approach therefore is self re-enforcing. Catch 22.

[Hidden in reply to pal-o-mine]

I didn't want to take alendronic acid because of the possible side effects. (It's worth reading these). I think my doctor was just anxious for me to compensate for the depletion of calcium and was happy to know I was doing this by taking supplements. I'm always very wary about what I put in my body, as if there are any worrying side effects I'm bound to get some of them 😀 Re: K2 it has been recommended on this forum and can be obtained over the counter.

[pal-o-mine in reply to Hidden]

Thanks, that's good to know. Will look into getting some.

[Hidden]

Well I'm afraid the side effects of alendronic acid dissuaded me from accepting my doctor's original offer and she luckily considered the calcium tablets to be an alternative.

[Nextoneplease]

Just as an aside….. I was diagnosed with osteoporosis about 12 years ago (well before PMR struck) and found it very difficult to take alendronic acid or similar things - my stomach just wouldn’t settle. In the end I was put on an injection of denosumab every six months, which I find much better. I don’t know what the criteria are for getting this but thought I’d put the info out there 😊

You do have to have blood tests to check various levels before the injection, and I do continue to take vit D, but have never needed the calcium or the AA🤞

[PMRpro Ambassador in reply to Nextoneplease]

Are you still on it? There is a problem with rebound loss of bone density leading to spinal fractures after discontinuing it unless the patient is switched to a bisphosphonate to stop that happening.

[Nextoneplease in reply to PMRpro]

Oh dear!! So I’m not clear of bisphosphonates forever! 😞But yes, I am still on denosumab, thank you 😊

[PMRpro Ambassador in reply to Nextoneplease]

The alternative is to leave you on the denosumab - which I think would be my preference.

[Nextoneplease in reply to PMRpro]

Mine too - I just read the drug safety update on gov.ukThanks for alerting me x

[pal-o-mine in reply to Nextoneplease]

Thanks Nextone, I hadn't heard of getting an injection instead of the AA. Sounds like a better deal, if you don't mind the needle (still only twice a year is an incentive to take it if offered). I'm fortunate that the AA does not upset my stomach. Just read PMRpro's reply to you and am thinking that every medication someone takes causes as many problems as solutions.

[HeronNS in reply to pal-o-mine]

You absolutely must read up on denosumab before considering taking it. I tend to agree with those who say you are still in a position to manage without the use of any of the drugs. Personally I think denosumab should only be used in cases where the patient has serious issues with bone thinning, possibly also other health conditions which contribute to frailty, and is prepared to stay on it indefinitely, for life probably. There are definitely people who need a medication like that, but most of us do not.

I've probably already recommended you read my story; in case I didn't, here is the link:

healthunlocked.com/pmrgcauk...

[pal-o-mine in reply to HeronNS]

Thanks Heron for your advice. I will read your story and take heed!

Short while later - Have read your story now and am impressed with the amount of work you have put into it. Will be looking into taking K2 and other supplements as suggested - will soon be rattling like a good-un walking down the street - but worth it.

[HeronNS in reply to pal-o-mine]

Vitamin K2 is a key part of this method! That and regular exercise.

[Nextoneplease in reply to HeronNS]

Wow Heron, have just read your amazing story. I’m already doing some of the things you suggest (vit D, prunes, magnesium for example, and light weights and a step counter) but will re-read and see if I can improve my regime.

Many thanks indeed for this x

[HeronNS in reply to Nextoneplease]

Vitamin K2!

[Nextoneplease in reply to HeronNS]

Was looking at this just now 😊 Any particular dose??

[HeronNS in reply to Nextoneplease]

The only country which has come up with a recommended daily amount is Australia - 180 mcg Vitamin K2-7. I take two 100 mcg capsules a day. It is supposed to be a very safe supplement, the only caveat I know being caution for people who are on a warfarin-type bloodthinner.

[Nextoneplease]

Sorry wasn’t recommending denosumab as such - I’m probably an extreme case on the bone thinning front (as with much else 🙄) so PLEASE no one take me as an example to follow !!!