Stopping Alendronic Acid

[Sammo47]

I've been taking Alendronic Acid along with pred (on the insistence of GPs and rheumy) for 2 years. At last I've managed to get a Dexa scan and they told me that my bones are good/normal and that there is no need to take the AA. Do I need to taper or can I just stop?Also wouldn't it make sense to do the bone scan before making you take the AA?

[Bridge31]

Unfortunately it’s on a lot of GP’s and Rheumatologist’s tick list. I refused to take it until I had had a Dexa. The scan was fine but my arrogant Rheumy still wanted me to take it. I refused.

I don’t know the advice for stopping taking it. The experts will be along soon.

[discoballs in reply to Bridge31]

Ditto on refusing.... AA....... I refused in my polite and fun manner. Awful AA. My teeth and jaw were aching so I dropped it after 4 days.

[PMRpro Ambassador]

It would - and my personal mantra is "No dexascan, no AA". I escaped AA for 15 years as that first and all following dexascans showed decent bone density that barely changed over all the years of pred. We do say to everyone who asks on here at the outset or when told they need to take it that a scan is a good idea. It doesn't tell the whole story though,

You can stop taking AA from one week to the next - no need to taper or replace it with something else. But I would tell the GP because I have no doubt you will meet with some resistance. But a holiday from the bisphosphonate at this stage where it is considered you don't need it would be good - you may need it later in life.

[Sammo47 in reply to PMRpro]

Thanks, I'll speak to GP and will continue with the calcium and vit D

[discoballs in reply to PMRpro]

I did tell my GP and he was cool with that. I'm just waiting on the result from my Dexa scan....

[DorsetLady PMRGCAuk volunteer]

No need to taper , but as PMRpro says doctor should be aware -it’s only polite after all! Plus you have report advising no longer required at this time.

It would make sense to get DEXA scan first - but NHS resources play a part -and it’s a recommendation in guidelines for those over 65 yrs that a scan is not required .

BSR guidelines para 6

Para 6 ) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis

A. Individuals with high fracture risk, e.g. aged greater than 65 years or prior fragility fracture

Bisphosphonate with calcium and vitamin D supplementation

DEXA not required

B. Other individuals

Calcium and vitamin D supplementation when starting steroid therapy.

DEXA scan recommended

A bone-sparing agent may be indicated if T-score is -1.5 or lower.

C. Individuals requiring higher initial steroid doses

Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative steroid dose is likely

[Sammo47 in reply to DorsetLady]

Thanks I understand now why it's taken so long to persuade the medics to arrange a Dexa scan for me. I'll speak to my GP

[WellThatHurt]

How I wish my Rheumatologist followed the guidelines! When I started Pred (Age 63) I specifically asked about osteoporosis and was told there was no need to worry just make sure I had plenty of vitamin D. (I'm a very petite lady with obviously fine bone structure and had already had one fracture.) A year later I had a major fracture of my wrist requiring surgery and weeks of pain. Only after that was I prescribed AA and sent for a scan showing very severe osteoporosis. So, from my perspective, if you are offered AA do consider taking it. You can always stop if you think you have side affects but may avoid lifelong fracture complications. P.S. I've since taken a year of Evenity and now on Prolia with no side affects.

[Sammo47 in reply to WellThatHurt]

Thanks for your reply. However I think you may have misunderstood my post. I have been taking AA for 2 years and have now been told that I no longer need to take it.

[Handloomweaver]

Dear Sammo47

It's such good news that your bones are good, you must be very relieved to drop taking the AA tablets. Are you still taking steroids or are you off those too now?

I have been taking Alendronic Acid every week since February 2023 as part of my treatment for GCA. I am currently tapering Pred slowly and am down to 6mg a day, and feeling very well.

I wasn't made aware of having a Dexa scan before taking the Alendronic acid but I will ask about it on my next review with my Rheumy.

Sorry I can't be of any help.

[Scarysit]

Hi

I too was prescribed Alendronic acid at diagnosis of PMR.

I have hiatal hernia and acid reflux. Clearly couldn’t tolerate tablets and after two months struggling GP finally agreed that I needed to cease taking with immediate effect.

I was then referred to rheumatology for infusions and for a Dexa scan (previous dexa showed osteopenia 6 years before and was put on Accrete tablets.)

Following Dexa scan I was told by GP that I no longer had to take Alendronic acid or have infusions as bones were right for my age, I would have follow up dexa scan in three years.

Finally 16months after 4 referrals I received a telephone appt last Thursday. I thought this would be about diagnosis. Not so, it was regarding Alendronic acid/ infusions.

Rheumatologist told me GP incorrect! As prednisolone literally rinsed any calcium from the body, although all was ok with scan, I will still require infusions. He’s gone away to do calculations and will be in touch!

Left hand/right hand, struggling NHS!!!

Good luck

[PMRpro Ambassador in reply to Scarysit]

"I have hiatal hernia and acid reflux"

That alone should have said no AA - they are direct contraindications! And then we have

"I no longer had to take Alendronic acid or have infusions as bones were right for my age"

Right for age has nothing to do with it, the comparison is with what your bone density would have been at its ideal peak in your 30s, the t-score. The z-score compares you to other persons of your current age - and to put it bluntly, comparing rubbish with rubbish still looks at rubbish. A lot of people our age in the past did have quite severe bone density loss though things have changed a bit.

I think I would be changing my GP!