Hi
I have been getting heartburn after taking Alendronic Acid recently. Am on weekly dose. Have been taking for 3 months. My Dexa scan came back normal and the Rheumy says to stay on until Prednisolone stops which would be at least next March. I want to stop now as would rather risk fractures
Don’t listen to me, but there is no way I would take Alendronic Acid if I did not need it. In fact my GP went on and on about taking Alendronic Acid every time I talked to him, my Dexascan was very positive, but he had read somewhere that AA should be prescibed anyway. I had numerous arguments with him and then a rheumatologist took my side and he seems to have been quiet since then.
Hi Piglette, my Dr prescribed me Alendronic Acid...the way he listed what the outcome of taking it incorrectly... scared me to death..It's still sitting in the medicine cupboard...
I always think it a bit sad when people are prescribed a drug that they never take. Also it is a waste of drugs and money! Doctors, I feel, can prescribe just because they feel they should, sometimes to make them feel (and convince the patient) that they have done something, although I may be maligning them. Have you got osteoporosis?
No osteoporosis that I know of....No Dexa scan so don't know if bone is affected...
I really pushed for a Dexascan and refused to take any drugs for osteoporosis until it was proved that I had it. I think it is so wrong that drugs are being prescribed just in case!
That's what I thought....why give you long term drug when the scan would show if you need them??Oh well I will keep taking my calcium, vit D3 and K2....
Good idea. I often wonder if some doctors actually realise how strong some drugs are and also if they are aware of the side effects!
Short answer - no!
Even then, the dexa isn't foolproof. My dexascan is still fine but I appear to have a compression fracture in the spine. It is also about quality of bone.
I suppose my thinking is...why not just send me for a bone scan??Why just give me more drugs to add to my growing list.....
The Alendronic Acid just scared me a little...
Why not just advise what to do instead of popping another pill..
I will say in my Dr's defense....he is supporting me in my step approach to lowering my steroids,...
This group really is my life line....
And I have to say both you and Dorset Lady are wonderful....full of such amazing advice.....thank you x
I didn't take it for 15 years!! Which I see as a plus
I agree you should have a bone scan… but guidelines say over 65 years don’t require - prescribe AA… as usual a blanket decision -
(6) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis (A−).
Individuals with high fracture risk, e.g. aged ⩾65 years or prior fragility fracture
Bisphosphonate with calcium and vitamin D supplementation
DEXA not required
Other individuals
Calcium and vitamin D supplementation when starting steroid therapy.
DEXA scan recommended
A bone-sparing agent may be indicated if T-score is −1.5 or lower.
Individuals requiring higher initial steroid dose
Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative steroid dose is likely)
The problem is some doctors don’t read the ‘we recommend’- just take it as gospel.
I have researched Alendronic Acid and it costs about £120 a month for the drug.....it costs around £125 for a scan.... makes no sense....
Fosamax possibly but AA generic is £45 for 2 months supply. And that isn't even the NHS bulk buy discounted price.
Latest NHS price says £22.80 for 4 tabs… 😊
Is that AA or Fosamax?
All - the indicative price is not same as drug tariff - do you know what the cost is to health authority?
Forgot - the agreement is probably with wholesale suppliers - which is why you sometimes get Fosamax, Brands get dumped too
Not according to this -
If you are having reflux problems with AA you need to have something done. There are alternatives - risendronate has a better gastric profile and there are also infusions or injections.
However, don't set your heart on being off pred by a specific date and it sounds as if you are banking on a year? It is very unlikely to happen! Fewer than 1 in 5 patients are off pred in a year, about a third may manage by 2 years - but that means the majority take longer and a highish percentage are still on pred at 5 years, albeit at a relatively low dose.
But personally - I refused to take it when my dexascan was OK, the worst t-score was -1.3, After 15 years on pred it had gone down to -1.6 - still in the middle of the osteopenia range and nowhere near osteoporosis. I have however recently had a zolentronate infusion because of a possible spinal compression fracture on an x-ray. I always said I would take something if proof were offered I needed it - but postponed it for over 14 years.
if you are in UK than have a look at ROS site for advice/alternatives
..and look at videos..
Hi Dorset Lady, if you read my reply to Piglette....I was so bothered by what I'd read about Alendronic Acid I couldn't take mine I was so worried.My Dr didn't suggest a bone density scan but I go on holiday Tue when I'm back I'm going to request 1.
I have been upping my calcium tablets and taking vit D3 and K2.... Also introducing more calcium based foods.
Hoping this will be enough to help...
I had a long conversation with a nurse on the ROS site and they suggested a one off infusion of risendronate that would (hopefully!!!) cover the time taking prednisolone above 5mg as recommended by GPs and others - it’s an option.
At the moment I’m sticking with AA and seeing how it goes. My plan to get to 5mg and stop AA isn’t going to plan. As my GP put it - life gets in the way - and I’m recovering from a recent flare.
The usual plan for infusions of zolendronate is 3 at one year intervals and stopping. Obviously the ROS nurse isn't too familiar with the reality of pred for PMR!!!
What I thought was interesting was she told me AA took a year of taking to reach full potency. So to get the most benefit while on Pred she suggested getting an infusion - hopefully to last until I get down enough (5mg). I didn’t take anything for my first year on Pred (all above 10mg) and with hindsight probably should have.
Hi Havanahula
My experience of AA has been rather like Catch 22. I was given it at the start of GCA and told that if I did not take it my spine would crumble immediately and wheelchair would await. Rheumy refused dexascan referring back to GP. Dentist went wild about AA prescribed before a dental assessment. GP has refused Dexascan saying that it would only show how my bones were while taking AA. I have given up at this point but haven't had any noticeable side effects and continue taking it meekly (3 years). With hindsight and knowledge I probably wouldn't have taken it in the first place more for the dental issues.
I didn't know that you can stop post 5 mg
" would only show how my bones were while taking AA"
And what is wrong with that? AA doesn't often improve bone density, the usual effect is to maintain the status quo but even that doesn't always happen and the dexascan is still useful information, Neither does oral AA have an immediate effect, it takes months to achieve much. The infusions work within weeks to achieve some changes.
Whether you can stop below 5mg is a moot point - even 5mg is now known to exert some adverse effects.
thanks I hope I am a bit more assertive now empowered by this site!
Suspect is it a funding issue behind all this
AA is cheap as chips and a LOT cheaper than dealing with a broken hip.
Take AA until I reached 5mg was the recommended note written on my DEXA scan results. The GP was also happy with this.
I had a sore stomach on AA< and the GP changed it to Denosumab injections.
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