Alendronic Acid Can the 'medication = side effects= medication for side effects' spiral be avoided?

[Hildalew]

I was diagnosed with polymyalgia rheumatica around 6 weeks ago having suffered from the condition for around 2 excruciating months. Prescribed Prednisolone (gastric resistant) for the first month. Tangible side effect was buzzy/hyper sensation some of the time - and increased appetite. Second visit to consultant a few days ago - prescribed a) prednisolone (not gastro-resistant) on a reducing dose for the next six months, b) calcium and Vitamin D to counter the calcium-reducing side-effect of the prednisolone and c) Alendronic Acid to 'bind the calcium to the bones'. Has anybody out there resisted taking the AA - the potential side-effects are, to put it mildly, pretty scary - and what was the result?

[PMRpro]

You would be far better asking this over on the PMRGCAuk forum

healthunlocked.com/pmrgcauk

where there are dozens of us in the same boat re AA.

I took 4 tablets, discussed it with a different GP, waited for the dexascan result which was fine, and took no more. After over 7 years, mostly at above 8mg, my bone density had barely changed (3rd dexascan) so obviously taking AA would have been a waste of time and money - and potential side effects. Calcium and vit D had been quite enough.

One lady there had a t-score of -2.1 and refused to take AA. In a year she improved the t-score to -1.6, no intervention advised, simply by diet, supplements and exercise (walking) with a weighted vest. Her story is there for you to read.

[Chris-Bromsgrove]

Hi Hildalew,

I took AA for a short time following a dexascan. This was after taking prednisolone for a sustained period for my MPA. Another doctor re-visited the dexascan results and decided that the bone density result was so marginal he took be off them. Thankfully I suffered no side effects with the AA. I thought generally AA was not used as a preventative measure but only when there is evidence that pred has caused a reduction in bone density. Chris

[PMRpro in reply to Chris-Bromsgrove]

"I thought generally AA was not used as a preventative measure but only when there is evidence that pred has caused a reduction in bone density."

Unfortunately that isn't true in the UK at least - there are many doctors who have heard the drug reps telling them that if it is used in people who have not yet lost any bone density they will be sure it wont happen and fractures of the neck of the femur will be history so elderly ladies won't die of them. The pharmaceutical company that developed Fosamax were absolutely aiming for it to be used preventatively.

[philtw]

I have just stopped taking AA after 4 years as I had a molar extraction and because of AA it was very slow to heal. I was transferred to a specialist and he told me that AA can cause osteonecrosis so they have stopped it because of the risk.

[philtw]

my bone density scan show my levels above normal

[PMRpro in reply to philtw]

After being on AA for 4 years it will do - it created denser bone, whether it is healthier bone is another question.

[Hildalew in reply to PMRpro]

You've reminded me that I have heard doubts about reduced 'flexibility' in bone after treatment with AA.

[PMRpro in reply to Hildalew]

Exactly

[Hidden]

Check out the community "Bone Health" (for Osteoporosis) Members are well informed about Alendronic Acid. Some take it, others refuse it. The comments would interest you.

[2534]

I was concerned about recent publicity about how bisphosphonates altered bone structure but was reassured on that point by a very good consultant. He also said denosumab might have less side effects than alendronic acid. I haven’t started on that. Good luck!

[PMRpro in reply to 2534]

He hasn't heard about the rebound loss of bone density that has been found to occur when you stop taking denosumab/Prolia then? Which means either you keep taking it for life or switch to alendronic acid or another bisphosphonate - which generally was what was being avoided in the first place.

[John_Mills Volunteer]

Do describe the function of Alendronic Acid as simply “binding the calcium to the bone” is a gross oversimplification. It is a very powerful drug with potential serious side effects and should not be taken without proper counselling. A lot depends on the dose of prednisolone that you are taking and for how long. You should have been given a DEXA scan to establish baseline bone density. Calcium with Vit D tablets do give a measure of protection against osteoporosis. I think you should discuss this properly with your consultant.

[PMRpro in reply to John_Mills]

I do so agree with you John - but how many people are told anything about AA? I certainly wasn't. And the sad truth is - most of those doctors haven't the slightest idea about it other than the somewhat gilded version fed them by the reps. "You can give this to all your ladies perfectly safely and you will never see an elderly lady with a NOF again...!

What doctors learn at a certain stage of training is difficult to shift - and they are terrified of pred and osteoporosis...