Alendronic Acid

[kate1978]

Hi all I was diagnosed with PMR 6 years ago GP put me on 15 mg of Pred and reduced down to 3 when I had a flare, I have been on Alendronic Acid for the first 5 years, a different GP said I no longer need to take it, then I saw rheumatologist, and he wants me back on it, I had a dexa scan in February 2018 and it was ok, just early stages of osteopenia Would value your opinions

[DorsetLady PMRGCAuk volunteer]

Hi,

If you’ve taken it for 5 years, then I doubt you need to go on it again - at the moment anyway. This is what nhs site says -

“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.”

I was on it for 4 years, and my GP & I agreed that was long enough (unfortunately am susceptible to osteoporosis- but don’t think I actually have it).

My new GP has suggested I go back on it - been off steroids for 3 years - and said no - but she has arranged DEXA scan - so will be interested to see results from that - but my answer will probably still be no!

[PMRpro Ambassador]

WHY does the rheumy say you need to go back on it?

[kate1978 in reply to PMRpro]

It was the first time I had seen a rheumatologist, think GP referred me after I had the flare, he said he wants me off the steroids ( you will have a heart attack or a stroke)

Also I need to go back on the Alendronic Acid for my bones,the reason my bones are ok is because I've been taking Alendronic Acid, his words!

[DorsetLady PMRGCAuk volunteer in reply to kate1978]

Who wants you off Pred? He’s scaremongering!

If AA stays in your system for 5 years or so, then don’t go back on it until DEXA scan proves you need to.

[kate1978 in reply to DorsetLady]

I think I will just pretend I'm taking it, I mentioned this forum to him and he said you shouldn't be googling! Didn't let me explain

I have learned a lot from this forum and had never heard of this condition before I had it

[DorsetLady PMRGCAuk volunteer in reply to kate1978]

Ok, one if those! Just nod politely ...and do your own thing!

[PMRpro Ambassador in reply to kate1978]

Oh dear. You have PMR and a doctor wants you off the only medication that manages it. Is that the new GP or the rheumy? Does he not think it is PMR?

Untreated PMR is more likely to progress to become GCA - and that increases the risk of a heart attack or stroke. So this needs some clarification I think.

[kate1978 in reply to PMRpro]

My GP just let me manage it on my own mainly, and only referred me to rheumy when I had a flare, so really it's the rheumy that's wants me on AA and of course he has written to my GP to say so

[PMRpro Ambassador in reply to kate1978]

Yes - but who wants you off pred? The new GP or the rheumy?

[kate1978 in reply to PMRpro]

Both !

[HeronNS]

Osteopenia is not a disease. It's a name given to the normal gradual bone thinning which happens with ageing. It is not good medical practice to make people who have only "low bone mass" aka osteopenia, take bone meds.

There's a lot you can do to maintain and even improve your bone density through purely natural means. Have a look at this for some ideas:

healthunlocked.com/pmrgcauk...

Moreover, the latest recommendation is that bisphosphonates not be taken for longer than two or three years in order to avoid the increasing risk of spontaneous fractures from bones which have become fragile because normal bone "remodelling" has been prevented by the bisphosphonate.

[kate1978 in reply to HeronNS]

Thank you very interesting reading, I've started Tai Chi and will look in to supplements

[gifford7]

Calculate your risk of a fracture in 10 years entering T-score[femoral neck] if available:

americanbonehealth.org/calc...

10-Year Fracture Risk Calculator Version 2.1

"Certain factors can put you at risk of breaking a bone. Did your mother break her hip? Do you smoke? Have you had cancer or thyroid disease? The American Bone Health Fracture Risk Calculator asks you a set of questions to help you figure out your level of risk. Then you can talk to your doctor about the steps you should take to keep your bones strong and prevent fractures. Just complete the survey and click on “Calculate Risk” to see how likely you might be to break a bone in the next 10 years."