Alendronic Acid - is it worth it?

[artisam]

Rheumatologist had just prescribed AA as the pred will be 'killing my bones'. She wants me to take it for 6 months then have a DEXA scan to see if I need to continue. Seems a bit of a barmy way round to me, but hey ho. So I have been reading back through all the posts I can find and am now absolutely terrified. Has anyone got anything good to say about this drug? I have a calcium rich diet and take 1000mg calciD a day - is that enough? I suppose I will at least have to give it a go and see what happens,but not till Christmas is over that's for sure. I would appreciate your thoughts, thank you.

[123-go]

Yes indeed a barmy way round. A dexa scan before you agree or disagree to alendronic acid is the way to go. I was prescribed it but have never taken it as my scan results were nothing to shout about and on advice from members of this group. Your decision but only after a bone scan...unless your rheumy has X-ray eyes 🙄.

[artisam in reply to 123-go]

Mmm, yes a wise thought I think. I may ring GP in new year and see what she thinks. Thank you for your reply.

[Horizon12]

I have been taking AA since diagnosed in February 2018.GP manages PMR and I have never been referred to any other professionals.

[artisam in reply to Horizon12]

And have you had any adverse affects that you know of?

[Horizon12 in reply to artisam]

None at all.

[PMRpro Ambassador]

Yet another with a crystal ball! It is a barmy way round and my mantra is no dexascan, no AA!

I had one within 3 months of starting pred, my t-scores were all better than -1.3 so I didn't take AA after the 4 weeks while i did my homework and came to an agreement with a different GP who was also sceptical about it. Over the last 11 years I have had 4 dexascans, the most recent in September. My worst score is now -1.6, just at the line where some form of bone protection should be considered and I expected the local osteoporosis expert to want to do something. She didn't - expressing amazement at such results from anyone on pred, never mind 11 years of it!

I took AdCal religiously until a couple of years ago when the bladder effects just got too much. I now watch the calcium content in my diet (more cheese) and take 4000 IU vit D. Maybe I'm unusual - but there are plenty of people on here who survived pred without AA and have acceptable bone density levels. Pred does NOT inevitably result in osteoporosis - nor weight gain, diabetes or a few other things.

[artisam in reply to PMRpro]

Thank you. I have never had any kind of bone density scan, so there is no base line to work from. Crazy isn't it?

[jinasc in reply to PMRpro]

Me 5 years GCA and pred, No AA, Dexa Scan first one 6 months down the line, then every year. No change and now 11 years GCA gone and bones still OK.

I loathe ' just in case' medications.

[SnazzyD]

I made myself unpopular and flatly refused AA until I had a DEXA scan. I didn’t need it at the time. It just shows how blasé some docs are with AA. Why prescribe any drug with potentially serious side effects before you know you need to? The risk benefit analysis needs both sides of the equation , though for some docs the mere fact that one is taking Pred means inevitable serious bone loss for all which is justification enough. Trouble is, if the theory is never re-evaluated through proper scrutiny of patients’ actual outcome (in fracture rate as well as bone density) it persists.

[artisam]

Mm, indeed. Another example of 'thats what we've always done, so...' Maddening.

[DorsetLady PMRGCAuk volunteer]

Actually your question should be - “is it needed”-answer - not until you’ve had a DEXA scan!

[artisam in reply to DorsetLady]

Ha! I'm beginning to get this loud and clear.

[piglette]

I have continual fights with my GP about AA. Luckily I have extremely good Dexascan results which I throw at him. I must admit in my case there is absolutely no way that I would take AA unless I had had a Dexascan that said I needed it.

[herdysheep]

the other crucial thing if you get a scan is to actually get your scores. 'Normal ' wont tell you where your bas line is just where everyone else is!

[artisam in reply to herdysheep]

Thank you, I'll remember that.

[clover-4]

After very bad Dexa scan results, I was prescribed Alendronic Acid. Having read all the stuff about it, I was terrified and stared at the packet for 2 weeks before plucking up the courage to take one. That was 2 months ago and I've had no problems at all with it. Still not sure about its efficacy though, but Hey Ho got to try something when Dexa scan results are as bad as mine🤣. Merry Christmas to all on this helpful forum!

[artisam in reply to clover-4]

Thank you for that. It's good to hear something positive. Merry Christmas to one and all.🎄

[scrambledegg]

I had a normal dexa scan 5ish years ago when first diagnosed with PMR. Was prescribed AA anyway and have been taking it ever since with no side effects. I brought up the subject with my GP a the last annual review and he said I should keep taking it until I am down to 5mg pred. daily. No chance of that in the near future as I'm on 10mg and struggling to reduce. I'm reluctant to go against his advice though so taking the cowards way out and taking it every 3 or so weeks rather that weekly.

[AdoptMeow]

Staying on a good supplementation regimen for at least three months and then having a baseline scan would give you better information to make a decision if a medication is needed for bone health. Risking the side effects of long-term AA without first determining there is a problem is not a wise approach. The supplements needed for bone growth are calcium, magnesium, vitamins D3 and K2. Bits of other minerals needed can come from a multi supplement. Taking a medication does not provide these building blocks so could just cover up nutritional deficiencies and allow bone loss to continue.

Averaging various sources, daily amounts would be 1200 mg calcium and 600 mg magnesium (which is essential!). At least 2000 IU of D3, and I've read recommendations of 4,000 or 5,000, especially for virus prevention.

The calcium supplement can be part carbonate, but should have other more readily utilized forms like citrate, phosphate, gluconate or lactate. Calcium carbonate requires an acidic stomach for absorption so will not be useful if taking acid reduction meds (which also seem to be prescribed when no problem has been identified or attempted to be resolved without medications). Magnesium can be gluconate, citrate, or oxide.

I don't understand why doctors prescribe omeprazole to decrease stomach acid and therefore mineral absorption, and then add an acidic med to supposedly aid the body to retain bone matter!

[artisam in reply to AdoptMeow]

Wow, that's quite some information to take in, but extremely useful for when I talk to the doctor. Thank you so much