Alendronic acid: I have stopped taking weekly... - PMRGCAuk

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Alendronic acid

Strelitzia profile image
25 Replies

I have stopped taking weekly alendronic acid, as I have started getting sharp pains at the base of my oesophagus. I am on 4 and a half mg of prednisone and biweekly Actemra. No pain. Feel great. I eat calcium laden foods and take daily supplements. Any opinions as I feel guilty?!!

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Strelitzia profile image
Strelitzia
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PMRpro profile image
PMRproAmbassador

You should get the pain checked out to be sure no damage has been done. It is a problem with AA - why they are so set on using it when there are others that are less gastro-irritant beats me. Well, it doesn't really - it is the name they recognise and probably the lowest price ...

krillemy profile image
krillemy in reply toPMRpro

What are the other alternatives?

PMRpro profile image
PMRproAmbassador in reply tokrillemy

There are other oral forms, risendronate is one which some patients find has fewer gastric effects. There are also infusions or injections which have no gstric effects,

versusarthritis.org/about-a....

Then there is denosumab/Prolia which is not a bisphosphonate but a monocloncal antibody and given as a 6 monthly injection. Once started it cannot be simply discontinued without replacement as there is likely to be rebound loss of bone density which can be severe. You either continue with the injections or you switch to a bisphosphonate to maintain the improved bone density which is obtained quite quickly with Prolia.

Strelitzia profile image
Strelitzia in reply toPMRpro

Hi PMRpro…Sorry ….I didn’t meant to sound so dismissive….what I meant was thank you for your suggestions AND I will check out other alternatives suggested! In actuality I hang on your every word, and you have got me through some very low moments!! Thank you!!!

PMRpro profile image
PMRproAmbassador in reply toStrelitzia

Didn't take it as dismissive at all - it is all quite overwhelming really,

Strelitzia profile image
Strelitzia in reply toPMRpro

Thank you…I am going to look at alternatives mentioned in other replies. I can only get a bone scan every two years. I definitely had some bone loss. I have a year to go.

SnazzyD profile image
SnazzyD

Why guilty? Whatever you do it’s for you, nobody else. You need to advocate for yourself and get it looked to assess the damage and if necessary get an alternative to AA. Did you ever get the exact results of your DEXA scan to know the extent of the reduced bone density?

Temoral profile image
Temoral in reply toSnazzyD

I recently stopped AA with rheumy's agreememt, and latest Dexa scan showed 'no significant difference ' .....so I have concluded that, altho there are osteo readings, exercise and diet are just as effective for me. My GP said AA is a terrible drug, but it's all we have...hmm

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toTemoral

My GP said AA is a terrible drug, but it's all we have...hmm

It’s not all we have, GP needs to look at ROS site - and that’s not the sort of comment they should be making.

May be in the minority, but I took it for 4 years with no problems whatsoever….

Temoral profile image
Temoral in reply toDorsetLady

I will mention that to her next time....but there is also a lot of research on the Save Our Bones site which gives alternatives to AA if people are looking at changing approaches. I know that has been mentioned before.

Strelitzia profile image
Strelitzia in reply toTemoral

I will look at that web site ….thanks…

autumnlass profile image
autumnlass in reply toDorsetLady

I took AA for 7 years in the early 2000’s - 2008 then stopped - ‘‘twas for osteopenia, and was reintroduced again in 2020 when on steroids for PMR. It affected me this time with joint pains, so switched to Risendronate and no problems at all with it.

Strelitzia profile image
Strelitzia in reply toautumnlass

Thank you for your answer…everything helps to make an intelligent decision.

PMRpro profile image
PMRproAmbassador in reply toTemoral

"It's all we have" - lord, I hope they know more about the rest of their subject!!! What tripe!

See the link I gave Krillremy above

Strelitzia profile image
Strelitzia in reply toSnazzyD

Yes I did get results that showed I had some bone density loss and I have since made a super effort with diet, and I am very active with sports and outdoor activities. No fractures ever. I am 78, I don’t want to medicate myself into oblivion! I have to wait a year before my next scan.

Thank you for your reply…the guilt is lessening!!

PMRpro profile image
PMRproAmbassador in reply toStrelitzia

Almost everyone over 30 is likely to get a result that suggests some bone density loss - it is a question of degree!

SnazzyD profile image
SnazzyD in reply toStrelitzia

You will have reduced bone density normally at your age; it’s the numbers that are significant.

Strelitzia profile image
Strelitzia in reply toSnazzyD

Good point….

Megasorearms profile image
Megasorearms

How fabulous, well done you :) You definitely get that pain checked out though !

Exflex profile image
Exflex

I had one of the AA side effects as listed in the PIL - stiffness / pain in joints (hands principally). My GP switched me to Risedronate and pain vanished. Stayed on the drug until 2.5mg Pred and decided I’d had enough and stopped taking it. (I’m currently on 0.5mg Pred.)

Had a DEXA scan 3 weeks ago and told I’ll hear back in approx 4W if somethings wrong, but otherwise it will take 6 months for the results.

Temoral profile image
Temoral in reply toExflex

Well done for reaching 0.5 👍

Strelitzia profile image
Strelitzia in reply toExflex

Thank you for telling me about your experience….I am going to ask my dr. about Risendronate, but would really like to avoid taking more pills!!

Purplelamp profile image
Purplelamp

My GP recently told me AA was only for over 5mg

PMRpro profile image
PMRproAmbassador in reply toPurplelamp

No such limitation that I know of.

Strelitzia profile image
Strelitzia in reply toPurplelamp

Interesting!

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