Alendronic Acid

[DavidMF]

Friend of my wife is taking Alendronic Acid, it rings bells with me and I seem to remember getting of the medication ASAP. But after 8+ years with PMR I seem to have forgotten.

[DorsetLady PMRGCAuk volunteer]

Depends if she actually need it… but it is recommended to take break after 3-4 years. But unless you know her circumstances it’s a bit difficult to comment. .

[Miserere in reply to DorsetLady]

Have just decided to take a rest from AA after some acid indigestion and reflux this week - came on suddenly. Dexa scores in 2021 were:

T score spine -1.1

T score femoral neck -1.5

T Score hip -0.6

Should I have even taken it, I wonder. I need a rest for a while, though. It was recommended before I fully understood what PMR is.

[PMRpro Ambassador in reply to Miserere]

Well I didn't with results not quite as good as those! Hasn't done me any harm!

[Miserere in reply to PMRpro]

Thanks PMRpro - good to know and I shall stop now.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

A T-score of -1.0 or above is normal bone density. Examples are 0.9, 0 and -0.9.

A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. ...

A T-score of -2.5 or below is a diagnosis of osteoporosis.

So spine/femoral neck within osteopenia range, but not desperate - and certainly doesn’t mean it will become osteoporosis

Hip -fine.

[Miserere in reply to DorsetLady]

Thank you so much! I shall stop the AA now.

[Bennijax in reply to Miserere]

Dear Misere, I don't know what your age is. I am 77. In 2011 at age 65 my scores were similar to yours.

My latest DEXA results (April 2023) are rather alarming and my GP is eager for me to start weekly dose of AA, asap.

Lumbar spine T score is -3.3 (Z score -1.5);

Hip (Femoral neck) T score is -3.6 (Z score -1.8).

Last DEXA was Sept 2020: Lumbar spine T score -2.6, and Hip T score was -3.6.

Previous to that was March 2017: Lumbar spine T score was -1.6; and Hip T score was -2.5.

I broke both wrist bones in a fall in July 2021 but these healed beautifully - consultant was very pleased with the last x-rays.

Buit I don't want to get worse and I must change my sedentary habits - just that I get so tired and achy, feel so rotten most days now.

I start AA tomorrow morning and I am aware the need to work out how to get weight bearing exercises into my daily routines.

[PMRpro Ambassador in reply to Bennijax]

I think if I were you I would ask for a second opinion from an osteoporosis specialist. Your GP obviously isn't too au fait with the use of bisphosphonates which only MAINTAIN the bone density and rarely can improve it significantly. The GP should have been pushing AA in 2020 - the warning signs were there and now your bone density is pretty low so I would have though Prolia would be worth considering to improve the density before switching to AA if they don't want to use the Prolia indefinitely. There is another drug available in the NHS now for severe osteoporosis.

You can also call the ROS helpline for advice - they know a lot more than your GP!

theros.org.uk/

[Bennijax in reply to PMRpro]

THANK YOU. The Rheumatologist did want me on three years on annual infusions after seeing the DEXA scan results in 2020. But it was Covid lock down year, I wasn't yet on prednisolone , only depo-medrone injections every 5 weeks, and I didn't want to go into hospital for the transfusions at that time. I was feeling so much better than I do now and much more positive that things would be OK if I didn't load myself up with all the various drugs being advised to take.

[Bennijax in reply to PMRpro]

I got a message from my GP this afternoon that I am being referred to the osteoporosis clinic. I haven't looked at the message online to see what date - will do so now. I also went online to THEROS and will call them on Tuesday. So thank you doubly.

[DavidMF in reply to DorsetLady]

Many thanks Dorset Lady. Since I wrote, I've found out that she's not on steroids, is suffering with AF and recently fell and broke her wrist. Is taking Calcium tablets, eats cheese & drinks milk and has a healthy diet. I asked her to ask WHY AA has been prescribed?

Even though she is paying for specialist treatment/advice, they don't seem to be able to agree with what her problem is.

They are both (Husband/Wife) intelligent people and she has been suffering for a couple of years after having stents installed. Apologies if this is outside your remit, but I feel I want to help in some way and not sure what to do.

[PMRpro Ambassador in reply to DavidMF]

Almost certainly because of the broken wrist - they may have classed it as a fragility fracture due to reduced bone density. But without knowing a lot more about the mechanism of the fall - did she fall onto her outstretched arm for example - and whether she has had a dexascan that showed low bone density it is really impossible to comment on it.

[DavidMF in reply to PMRpro]

She did have a Dexa scan but this was normal and nothing to take action for.

[PMRpro Ambassador in reply to DavidMF]

So the question is - why did she need AA? But there isn't a lot you can do if that is what the orthopaedic people decide that is what caused the fracture. They got excited that I had a history of a broken bone - 20 years before as the result of a high speed skiing accident!

[DorsetLady PMRGCAuk volunteer in reply to DavidMF]

Agree with PMRpro -if scan was okay -why AA?

As for stents -assuming you mean arterial ones, then do know a bit about them -late hubby had triple cardiac bypass in 1990s -so quite au fait with all that -if only as an interested onlooker.

[Exflex in reply to DorsetLady]

I’ve heard it said quite a few times on here by various people.

Does the recommendation of taking a break from AA after 3 or 4 years come from the medics, or just what patients think is right?

I stoped at 2.5mg (now 1.25 / 1) but still the doctors raise an eyebrow when I tell them.

[PMRpro Ambassador in reply to Exflex]

From medics - or rather, from studies.

imperial.ac.uk/news/177851/...

This is from the MSD Manual (The Merck Manuals are medical references published by the American pharmaceutical company Merck & Co., that cover a wide range of medical topics, including disorders, tests, diagnoses, and drugs. )

msdmanuals.com/home/bone,-j...

"Long-term use of bisphosphonates may increase the risk of developing unusual fractures of the thighbone (femur). To reduce the risk of these fractures, doctors may have people stop taking bisphosphonates for 1 to 2 years or longer. These planned periods of time are called bisphosphonate holidays or drug holidays. How long a bisphosphonate holiday lasts is carefully considered by doctors. Doctors base the decision on certain factors such as a person's age, DXA scan results, whether they have had fractures, and how likely they are to have a fall. People who are on a bisphosphonate holiday should be routinely monitored for decreasing bone density. Because the risk of fracture does increase while people are on a drug holiday, doctors try to balance the benefits of the bisphosphonates with the possible side effects."

The equivalent page for professionals says

"Long-term bisphosphonate use may increase the risk of atypical femoral fractures. These fractures occur in the mid-shaft of the femur with minimal or no trauma and may be preceded by weeks or months of thigh pain. The fractures may be bilateral even if symptoms are only unilateral.

To minimize fracture incidence, consideration should be given to stopping bisphosphonates (a bisphosphonate holiday) after about

- 3 to 5 years of use in patients with osteoporosis (by DXA scan) but few or no other risk factors for bone loss (3 years for IV zoledronic acid and 5 years for oral bisphosphonates)

- 5 to 10 years of use in patients with osteoporosis (by DXA scan) and fractures or additional significant ongoing risk factors for bone loss and future fractures

Intermittent cessation of bisphosphonate treatment (drug holiday), as well as initiation and duration of therapy, depend on patient risk factors such as age, comorbidities, prior fracture history, DXA scan results, and fall risk. The drug holiday is 1 year or longer. Patients on a bisphosphonate holiday should be closely monitored for a new fracture or accelerated bone loss evident on a DXA scan, especially after being off therapy for 2 years or more."

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

TY

[Exflex in reply to PMRpro]

Thank you PMR, I’ve saved this to show the doctors if questioned further.

[DorsetLady PMRGCAuk volunteer in reply to Exflex]

PMRpro has replied - and not just patients..

[Missus835]

The Rheumy keeps pushing it at me, but my digestive system cannot take it. So I don't. That's all I have.