Alendronic acid

[Scalloplover]

Hi all

Ive been taken alendronic acid since being diagnosed with PMR in July. I am tapering from 15 mg now on 9 mg pred. Do I really need the alendronc acid?

[Rosina1871]

I got down to 1mg and requested a dexa scan. I still need to take it for a while as I still have osteoporosis

[Scalloplover in reply to Rosina1871]

Hi Thanks for your reply. I don't have osteoporosis and never broken a bone so I’m not sure I need it .

[Rosina1871 in reply to Scalloplover]

You may not need it. Have you had a dexa scan? I’ve never had a broken bone, touch wood! And I was very surprised by the results of my initial scan which showed I had osteoporosis 😢

[piglette in reply to Scalloplover]

Why are you taking it? Have you had a Dexascan showing you don’t have osteoporosis?

[Scalloplover in reply to piglette]

I was given it by GP with preds and Calci D . I assume NHS guidelines .

[piglette in reply to Scalloplover]

Fair enough. I suppose I am the born sceptic and check everything. My father was a doctor and he could not even diagnose a broken arm. It was his arm!!

[Excelsior80 in reply to Scalloplover]

link from pmrgca.org.uk/information-a... , British Recommendations for managing pmr .. suggests give it if reason to think fragile bones, eg over 65, or previous fractures, recommends scan if not. I was 65 on diagnosis and got neither AA nor a scan, just the calci - d but now i thought I should check, a younger cousin has got osteoporosis with no pmr or pred, found after breaking a bone. I did have a calcium levels blood test at the start.

[DorsetLady PMRGCAuk volunteer]

If you don’t need it then discuss with your doctor.

Although you may not have osteoporosis (when were you last tested) being on Pred is a factor in decreasing bone density.. but if you get enough through diet and exercise to keep bone strength at good level you may not need it.

[Scalloplover in reply to DorsetLady]

Thanks. I will .

[PMRpro Ambassador]

How do you KNOW you haven't got osteoporosis? Have you had a dexascan with good results?

It is very difficult to forecast whether you need AA from the start or not but it tends to be assumed that everyone of our age has low bone density, certainly lower than it was at 30 which is the reference. Pred can impair the uptake of calcium and lower vit D levels - and that can lead to a rapid deterioration in bone density in a relatively short time. In younger patients or those with proven good bone density the recommendation is calcium and vit D supplementation, but many doctors automatically use AA on the grounds prevention is better than cure.

I didn't ever take AA as my bone density was at the upper end of osteopenia and it never changed a lot - I had regular dexascans with the first being about 2 months after starting pred - and it was still middle of the range last year when I developed a spinal compression fracture. I am now in the middle of a course of annual infusions of zolendronic acid.

[Scalloplover in reply to PMRpro]

Thanks for your reply. I’ve been taking the supplements supplied by GP since being diagnosed but I will ask for a dexa scan. I don’t know how easy they are to come by in this area.

[Excelsior80]

I asked for a dexa scan a couple of weeks ago and its on Monday, I was surprised, I expected a longer wait. Gloucestershire NHS

[PMRpro Ambassador in reply to Excelsior80]

No-one ever wants anything at this time of year!! I remember phoning a patient to offer an appointment on 24th December - "Are you sure? But that's Christmas Eve." she said - That's right, we are here and working until 5pm, like every other day except Christmas Day, Boxing Day and New Year and we only get them off because NO-ONE would turn up!!

[Scalloplover in reply to Excelsior80]

Thanks that’s reassuring . I’m in Dorset.

[Palgeo]

I was diagnosed by my gp with suspected pmr in November 2023. All the typical symptoms. Pred provided instant relief of pain. No referral to rheumatology. I was prescribed Alendronic Acid which I took according to instructions until August 2024 when I developed intermittent stomach pain. Pref down to 8mg. On researching AA through Osteoporosis Society I found it is not recommended for people with hiatus hernia which I have (very common in the over-70s). I stopped AA and requested DEXA scan. I discussed AA and HH with hospital radiologist who confirmed AA should not be prescribed in people with HH. DEXA scan showed my bones good. I’m taking the Calci-D but Tim Spectre (Zoe.com) is doubtful about effectiveness of calcium supplements. Any suggestions? I recently had emergency surgery to remove caecal tumour (not connected to stomach issues). I cannot get a follow-up post-op appointment with surgeon and have been placed on 20-week waiting list at Norfolk and Norwich UH. No information to gp. Any suggestions?

[DorsetLady PMRGCAuk volunteer in reply to Palgeo]

I’m taking the Calci-D but Tim Spectre (Zoe.com) is doubtful about effectiveness of calcium supplements.

TS might be sceptical about calcium supplements-but you must remember he is looking at the population in general -not those taking Pred which can cause a decline in bone density.

If you look at ROS site or speak to one of their nurses on helpline, I'm sure they’ll say you do require Calci-D or equivalent.

[Palgeo in reply to DorsetLady]

I will check that out. Thank you.

[PMRpro Ambassador in reply to Palgeo]

As DL says - Tim Spector's opinions may well apply to the younger and healthy worried well but we don't come under that heading. You might not need the full dose extra if your diet has plenty of calcium. But you do need vit D - pred depletes both calcium and vit D in the body.

I take it your GP knew you had a hiatus hernia? But still prescribed AA? It is contraindicated in ANYONE with difficulty swallowing or any condition that can cause reflux. And they should have known that. I'd make a complaint - just to make sure it doesn't happen to anyone else.