Alendronic acid warning

[Gillymar]

After severe pain in my left thigh.for many years a new doctor at my surgery sent me to the orthopaedic clinic where it was discovered I was walking on a fractured femur caused by taking AA for 6 or more years. A steel pin inserted through the bone cured the pain. I am wondering how long the effects last in the system. I stopped taking it 7 months ago approx. Beware also not to have a tooth extracted as broken jaws can result if taking AA

[PMRpro Ambassador]

There is another lady on one of the forums (this one I think) who has bilateral fractured femurs due to taking alendronic acid - after only a couple of years. I know several who have jaw problems.

That strikes me as a fairly high rate of AA side effects in this community alone that doctors will insist are exceptionally rare (I don't believe them).

I do hope your doctors have reported it as an adverse event - while it is a known side effect, it is only by using the yellow card system in the UK and the FDA reporting system in the USA that the REAL rate of adverse events can be established. And when the truth is know it is rather different from the figures the pharmaceutical companies quote but since it is voluntary you meet many doctors who don't understand the importance of reporting such things.

How long do the effects last? I believe that at the last count, AA was found to be still present in the body after 10 years. When they next look it will be 15 years or so. AA has only been in widespread use for less than 20 years - Fosamax was approved for use in 1995 and it took time to build up the customer base. The question is, is it the presence of the substance in the bone that causes the problem? Or is it the different type of dense bone that is formed? I have no idea.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear that. It does say in paperwork you shouldn't be on AA for more than 5 yrs, because of problems Think most are aware of potential teeth/jaw problems!

I came off it after 4 years - did think I needed early on due to high doses, but lots of people won't touch it with a barge pole!

Not sure how long it stays in system, but somebody will!

[PMRpro Ambassador in reply to DorsetLady]

Celtic was on high doses for GCA, due to a misunderstanding between doctors she didn't even take calcium and vitD and not AA as I remember - bone density was fine! Everyone is different...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very true. Although I was prone to osteoporosis-early hysterectomy- I don't think I needed it. But at the time of diagnosis/prescribing my head was not in a good place (to put it mildly) and I was very naive GCE -wise so I accepted what doctors said.

However, today I question everything!

How life changes things.

[Daisychain12 in reply to DorsetLady]

Does hysterectomy make us prone to osteoporosis??! Far out. Something else no one told me. I had one twenty three years ago. Screaming🗣

[DorsetLady PMRGCAuk volunteer in reply to Daisychain12]

It can do. I had mine aged 37 - but have to say, I seem okay.

[PMRpro Ambassador in reply to Daisychain12]

Depends - if it was total, i.e. ovaries removed too then yes. The lack of oestrogen has an effect and a young-ish patient should be warned and given HRT where appropriate. Most osteoporosis develops post-menopausally and that is why men have lower rates.

This is another very old thread that has resurrected - did you find it by accident DC or were you searching?

[Daisychain12 in reply to PMRpro]

Accident PMRpro. Got side tracked while researching stuff for my innocent 83 year old mum who thinks Prolia is a fabulous wondrug because the doc she trusts told her so. Saw this thread somehow and thought “ hmmm. Something else I wasn’t told”. Still got ovaries but needed hrt. It was MARVELLOUS and when I had to quit due to cancer o was very upset. Cxxx

[PMRpro Ambassador in reply to Daisychain12]

Yes - I stopped HRT when there had been one scare too many and really regret it now. The PMR surfaced some months later - coincidence or not, wish I'd continued with HRT.

[Bittebitt in reply to PMRpro]

My rheumy told me this tursday that, according to latest research, taking calcium tablets doesn't help. He said it when I told him that I didn't take it, because I get stomac ache. He said I could drink 3-4 glasses of milk instead.

[PMRpro Ambassador in reply to Bittebitt]

It probably doesn't help healthy people - but a study some years ago showed patients on pred who took calcium were less likely to lose bone density. However - frankly I find my calcium tablets infinitely preferable to drinking 3 or 4 glasses of milk! Yuk!!

[HeronNS in reply to Bittebitt]

Different kinds of calcium will affect you differently. Calcium carbonate, for example, is the ingredient in Tums! More easily absorbed is calcium citrate, and I have been taking a supplement with calcium hydroxyapatite, as that's the kind which my be more effectively absorbed by people on prednisone. I do have to have a little food when I take it, especially in the evening. Even a little yoghurt helps. The only rheumatologist I've ever encountered, at an information clinic for osteoporosis patients, said she didn't believe in calcium supplementation! It is at the very least recommended that supplements supply no more than half your calcium intake, the rest should be through diet. Plain liquid milk is NOT the best source, despite what doctors and the dairy industry tell you. If you ingest too much animal protein you also up your phosphorus intake and that leaches calcium from the bones. Foods like hard cheese, yoghurt, kefir, probably better as all fermented foods appear helpful, and there is calcium in tinned salmon and sardines, if you eat the bones. Plant sources include many, although not all, of the leafy greens. Eat your kale and broccoli! Take your D3, your K2, make sure your magnesium intake is in balance with your calcium. Get as much appropriate exercise as you can reasonably manage.

From me, who posted a couple of days ago that the natural route has measurably improved my bone density in a single year, despite being above 5 mg pred for half that time.

[HeronNS]

Just skimming through an article (from 2000!) about chemical effects of bisphosphonates in body. Here is an interesting clause: "...estimates for the potent bisphosphonate alendronate suggest a biologic half-life of more than 10 years after single-dose IV administration." However, "The amount of bisphosphonate retained after either oral or IV administration varies widely both between patients and across clinical conditions and is primarily believed to reflect variations in bone turnover."

It does seem that bisphosphonates increase bone density as measured by DXA scan, but this scan cannot tell what the actual health of the bone is. As PMRpro suggests it could be the presence of bisphosphonates in the actual bone structure, and there is also a possibility that if the bones are not being properly remodelled, in other words the osteoclasts are prevented from removing old bone, then the new structure encouraged by bisphosphonates is built upon bone which is inherently brittle.

I suggest that people who are on bone meds really should follow all the same practices as those of us who reject the drugs - that is to make sure all the micronutrients needed for bone health are ingested through diet, and supplements when necessary, and that appropriate weight bearing exercise is a regular part of one's life.

[Hidden]

I was on put on AA when I was first diagnosed with PMR along side the Pred, Calcium & VitD (5 years in February) I had a dexa scan within six months & was found to have Oestopenia, which may have already been there.

I always found it a difficult drug to take but preserved despite what I'd read.

In July last year I was diagnosed with with breast cancer & had a Mastectomy followed by Chemo which also 'dampened' down my PMR for a couple of months.

After finishing Chemo l was changed to a Zolendronic Infusion 6 monthly for three years by my Oncologist.

With the type of cancer I had, triple negative (TNBC) there are no options post surgery other than Chemo & unfortunately this type of cancer is very likely to reoccur so the ZA is now recommended as a prevention of recurrence in the bones for post menopausal women.

So for me the ZA is a necessary evil as the alternative isn't very promising! I'm due another dexa scan in the new year so will be interested to see if there is any change in my bone density.

Best Wishes to Everyone 💐

[30048]

Unfortunately this warning came a couple days too late . I just had my third infusion two days ago. Last night I woke up with a lot of bone pain...even in my jaw and head. I had to take a pain pill. My first thought was that I would never take it again. They have a new drug in the US..Prolia. It comes in two injections six months apart. Results, of course are not in yet and my co-pay was one thousand dollars. I declined. I thought it was necessary due to my recent back fusion....I might have had that backwards. Oh my, where are doctor's when you need them......mostly, out to lunch.

[PMRpro Ambassador in reply to 30048]

I don't think Prolia is new in the USA? There are people on this forum in the UK who have been on it for 2 or 3 years - and I don't think it was new then. Having looked - it obtained FDA approval in 2010.

[30048 in reply to PMRpro]

Thanks...again wrong info from doctor ...what can I say ? This forum is worth it's weight in gold.

[30048 in reply to 30048]

By the way. Does anyone know if Valerian root would have an interaction with prednisone ? It is used for sleep and anxiety.

[Pebble-Sue55]

I had terrible stomach pains with Alendronic Acid and my GP has changed me over to Risendronate, but I am afraid to take it, is it the same as AA?

[PMRpro Ambassador in reply to Pebble-Sue55]

It is similar but not the same. It is supposed to be better than AA in terms of gastric problems.

But have you had a dexascan? Do you REALLY need it? Heron will wax lyrical on that!

[HeronNS in reply to Pebble-Sue55]

As PMRpro suggests - here is my paean of joy, having received great results just today:

I was told I "needed" bone meds last year, because prednisone placed me with other factors into a high risk category. I did not take the meds, but upped my game re exercise and nutrition, and a year later new DXA scan and they are no longer recommending drug treatment! Basic t-score has moved from -2 to -1.6.

[Jankie]

That's good news Heron. Same with me. I've been on Preds for over 2 years. Now down to 5mg.My Dexa scan results showed no change in 2 years. Still just above the crucial scale. The consultant said its because my diet was good and I walked and exercised every day. Sometimes it's a struggle but I just don't want to be on anymore drugs