Alendronic acid 70mg: I’ve just been presented... - PMRGCAuk

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Alendronic acid 70mg

Woolyhead profile image
8 Replies

I’ve just been presented Alendronic Acid 70mg and having read the guide on taking it I’m not keen. I’m taking Prednisolone, only 1mg every other day, for PMR which does flare up from time to time. Does anyone have any views on this medication?

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Woolyhead profile image
Woolyhead
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8 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Why are you being offered AA now? How long have you been on Pred and at what doses .. not sure whether you had PMR or GCA or both?

Have you had a DEXA scan, or do you know if you have osteoporosis?

I took AA with no problems for 4 years with no problems, by our advice is usually only to take if it’s really required - so a bit more info on your history would be useful.

piglette profile image
piglette

As DorsetLady asks have you beeb diagnosed with osteoporosis? If you have, you should consider Alendronic Acid or an equivalent.

Smithie49 profile image
Smithie49

Hi Woolyhead. I've refused to take AA as I really don't like the sound of the side effects. I was diagnosed with osteoporosis 2 years ago and since then have followed all sorts of advice from this site - daily vit D3 and K2, Mg 2 or 3 times a week and lots of Ca in my diet. I also do heel drops and other thumpy (!!) exercise. My rheumy sent me for another DEXA scan which I had on Tuesday. I am really hoping my low scores will have improved. Good luck with your decision.

PMRpro profile image
PMRproAmbassador

This seems a bit late to offer AA - have you had a dexascan that shows you have very low bone density or have you developed any fractures?

It isn't JUST bone DENSITY that matters, it is bone quality too and pred does affect the structure of bone which means spinal fractures can occur. I never took AA tablets, my bone density was good enough originally that bisphosphonates wouldn't have been recommended then. However, just over a year ago, after longstanding back muscle pain, an x-ray identified a compression fracture of a vertebra in my spine. A year ago I had my first bisphosphonate infusion and have just had the second. Since the first, my back pain has slowly but surely improved and there has been another noticeable improvement since the second a few weeks ago, It may be coincidence but one I'll take as a benefit. Spinal fractures HURT and can be very disabling - ask tangocharlie or read some of her posts about not taking a bisphosphonate and developing a lot of fractures.

Remember, the side effects list includes everything that has been known to happen and been reported. If you read the list for paracetamol or ibuprofen you would never take them again either if you thought you would develop them. But noone gets all the side effects and most people get only one or two or none.

tangocharlie profile image
tangocharlie

The risks of osteopororis in post menopausal women is so high - something like 1 in 2 - even without the added problems of steroids - that I would urge every woman to look into options and then decide whether to take something or not. AA is cheap so it is usually the first thing offered but there are lots of other options. The Royal osteopororsis society website is excellent. theros.org.uk/

I had positive DEXA scans so I thought I had nothign to worry about, but they were misleading in many ways. They cannot accurately tell bone quality. I learned the hard way (by getting catastrophic spinal fractures). It's personal choice but also bear in mind the risks of not taking anything which are far higher than the very very low risks of things like necrosis. Claire Vandevelde a rheumatlogist specialising in bones did a talk for us recently and she said in all her years she had only ever come across one case and there were very particular circumstances.

Janstr profile image
Janstr

My mother had osteoporosis & ended up in constant terrible pain from it. It is not something to be underestimated.

Obscureclouds profile image
Obscureclouds

when Rheumatology rang me after my PET scan in July to say I had Vasculitis along with Pred and Adcal-D3 they were sending a prescription for Alendronic Acid which it was essential I started taking to protect my bones for the future. When I picked them up I thought “no way” especially as I’ve always had problems swallowing pills at the best of time. I was told not to take them & the consultant would arrange an alternative. When I saw him he said he would do so as a priority. I took this urgency at face value and even kept chasing when I heard nothing and finally in December I received a response that he was happy for me to stop taking AA pills (???) and instead have an annual infusion of Zoledronic Acid. Which I had in January. As far as I understand they are quite open to people having this if you are not prepared to take the pills but they first do a blood test to make sure it’s suitable. Zoledronic in itself has side effects including warnings about jaw and dental issues. (I sought comments on this forum) Difficult to know whether I actually needed it or not but it sounded like the risk of osteoporosis was not something I should be taking on top of everything else. If you’ve been on higher doses of Pred in the past perhaps you’ve reached a point where they think you might be more at risk even on such a low dose now. Hope you find what’s best for you 🤞

Tombolinio profile image
Tombolinio

Hi I've taken it weekly 70 mg for the last 3 yrs whilst also taking 5mg pred.ive just had a bonescan and all good and had no problems with the alendronic acid. I've actually been told I don't need to take anymore. Hope this helps.

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