Newby - Alendronic Acid : Hi I have posted once... - PMRGCAuk

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Newby - Alendronic Acid

Peony63 profile image
13 Replies

Hi

I have posted once recently on this site and I have just read an interesting piece on Alendronic Acid.

I am a little concerned about taking it now and wondering if I should wait until my Dexa scan to see if I really need it?

Any advice is welcome.

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Peony63 profile image
Peony63
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13 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

We usually advise to wait and see if actually required… but what in particular are you concerned about. Many of us have taken with no issues.

Catsrcool profile image
Catsrcool in reply toDorsetLady

My rheumatologist said you don’t wait to see if you need it, you take it weekly to prevent osteoporosis. Too late when you have. Pred is going to leech calcium from bones whether it be in small or large amounts, prevention is key.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toCatsrcool

I am aware what Pred does.

When I said wait and see I meant have a DEXA scan to see the state of your bone health and then make the decision.

I had GCA so on high doses of Pred and an early hysterectomy so was susceptible to osteoporosis -so I took AA for 4years.

My DEXA scan 3 years post GCA was absolutely fine.

All I’m saying is some don’t require AA… and their doctors agree… as with many things PMR & GCA one size doesn’t fit all.

Catsrcool profile image
Catsrcool in reply toDorsetLady

I too had an early hysterectomy. 23 other operations and have GCA/PMR and Fibromyalgia.All I was saying my rheumatologist recommends Alendronate straight up to prevent osteoporosis. I was on high doses of pred for a long time. It certainly wrecks your bones and skin.

PMRpro profile image
PMRproAmbassador in reply toCatsrcool

Not always - I've been on pred for 16 years and not been on a bisphosphonate until lest year. My bone density has hardly changed. My shin bone skin has interesting bruises because of anticoagulation therapy but it is the only skin that is thinned.

PMRpro profile image
PMRproAmbassador

What does the interesting piece say?

A week or two ago we were told in an excellent talk by an experienced rheumatologist who specialised in osteoporosis that we are at a greatly increased risk when on pred and the thresholds for starting medication are quite a bit different. Anyone with a t-scores in their dexascan that are worse than -1,5 needs to take something and bisphosphonates are preferable to just calcium and vit D. It isn't just the bone density - pred affects the trabecular structure of bones and makes it less strong and the most concerning effect is on the vertebrae.

Stargiver profile image
Stargiver in reply toPMRpro

I have asked for a bone scan as have been advised to resume taking Ibandronic acid. This is in light of the possibility of a knee replacement. However my GP said they don’t routinely give these scans as it is assumed that after a couple or 3 years on Pred my bones would show signs of thinning.

PMRpro profile image
PMRproAmbassador in reply toStargiver

They also don;t tell the whole story. Two of us on here had "good" dexascan results but still developed spinal fractures. Bisphosphonates do more than increase or mantain bone density - they also stabilise the tradelcular bone structure which is also very significant spinal fractures.

piglette profile image
piglette

Personally I would wait for the Dexascan.

Oh-my profile image
Oh-my

if you have any worries or concerns it’s worth talking to the specialist nurses in the Royal Society of Osteoporosis

theros.org.uk/

I had two long conversations with them before starting - I get very anxious with any new medication - and it was very helpful. I did request and wait for my DEXA scan results first before starting so I could make a more informed decision.

CathyMeg profile image
CathyMeg in reply toOh-my

Thank you for this link. I have wedging in my spine and after 5 years on Pred am about to see a new rheumy on the advice of my GP and probably start some bisphosphonates. I am a retired dentist and very wary of these since they were first introduced Will further investigate your link.

It is also helpful to hear how many on this site have successfully used Actemra. But then you do need to get off that too. I am in Australia so hope I can use that. I see the new rheumy in March so fingers crossed. Have had two duff rheumy in my five year journey but great GP. 🤞

Thank you sooo much for this site. Life saver for physical and mental health.

PMRpro profile image
PMRproAmbassador in reply toCathyMeg

Getting off Actemra is not a problem - you don't have to taper it. But it has cured nothing and if the underlying disease process is still active, then the inflammation will build up again until it causes symptoms. But that is a differnt problem.

The dental problems seen with bisphosphonates are almost exclusively seen in oncology patients who required frequent infusions for their cancer. In oncology, patients are likely to be given an infusion every 3 or 4 weeks whereas for osteoporosis it is one infusion a year for 3 years in total. They are exceptionally rare in patients on oral bisphosphonates.

Gc2596 profile image
Gc2596

I too was referred for a Dexa scan, just on Monday. My GP prescribed AA and gave me 4 tablets to see if suits. However, I have decided to await the results. On Prednisolone since diagnosis and although started on 15mg, down to 12.5, 10, 7.5 then 5 back to 10. I've just been increased from 9 to 10mgs. My post definitely got a reaction of 'rollercoaster' and have a much better understanding now. I believe you are having a more settled titration. Having watched a Webinar by the Royal Osteoporosis Society today I don't feel as concerned as had been so if results poor will take AA and with an attitude of better late than never.

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