I’ve been in pred since June and just reduced to 7mg. Dr has now prescribed Alendronic Acid and having read the side effects especially on feeling unwell and jaw problems it seems like exchange a hypothetical potential bone issue for a whole loss of prevelant side effects. I have a dental implant in April and frankly don’t need any more issues with teeth or jaw bones. Does anyone have advice ? Normally I’m all in for listening to the medics but this one seems like a trade off too far without proven issues on bones.
Thanks for listening
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Anarion1
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Your reaction is similar to mine was. I insisted on a DEXA scan ( bone density) and when the results were good I refused the AA. Two years later I had another bone scan and it was still good. I was put under pressure by the GP which I found inexplicable. I was asked if I wanted to end up in a wheelchair. Do your research and make your own decision. Look at FAQs under bone health, this gives you Heron’s post on how to take care of your bones. It is excellent.
My experience is that my GP prescribed AA at the start of taking 15mg pred 2 years ago and it wasn't until I joined this forum that I learned about the Dexascan. I asked for the scan and had it in June with a normal result so I stopped taking the AA as the technician said I didn't need it. She also said I should have had a scan at the very start !!
I was offered it although dexa scan showed no major problems so, given the potential side effects, I declined but upped my calcium and vitamins and weight bearing exercises, good luck!
It really depends on whether you actually need it or not…have you had a DEXA scan? If not, then ask for one. Then you can make an informed decision.
I took AA for 4 years with no issue’s whatsoever….. but why add in another medication unnecessarily.
Most manage well enough without , are you on a prescribed Vitamin/Calcium supplement, that is very often enough to protect bones as well as a good diet and strengthening exercises.
But if you have osteopenia, then you may well need to take protection, osteoporosis in itself can be very debilitating and painful.
I too was prescribed AA in September 21. I too have big issues with my jaw losing bone and frequently have gum infections and receding gums. I asked about the effects of AA and was reassured that it will only damage the jaw bone after long term use. (My dexascan was -2 for my neck of femur and I was diagnosed with osteopenia ) Presumably they're not planning on keeping me on AA for too long then. I'll have to ask and recommend you do too.
I refused AA until I had a DEXA scan and although it showed osteopaenia it wasn’t bad enough to warrant it. At that point I was on high dose steroids and just prior to that it was found that I had a very low vitamin D level which had probably been like that for years. I took a punt and decided not to have AA. Like you I have major dental work waiting in the wings and I also have a cancer gene, like my uncle who died of oesophageal cancer, plus I had had years of chronic reflux. The docs ignored that and still wanted me on it even though the guidelines said my level of osteopaenia warrented just supplemental support. Did it pay off? Yes and no. So prior to Pred in 2017, a DEXA in 2004 before removal of my ovaries (induced early menopause) aged 41 showed that by 2017 I had lost 10% of my bone mass. Very active life, lots of sporting accidents no problems. After 4 years and high dose steroids I had lost 2.5-3.5% in various places. During this time I’ve had a few bad falls onto hard surfaces that could have broken bones but didn’t. I’m still just below the line for treatment (look up FRAX tool) and since I am currently off Pred so have declined AA. We’re all different though but this story shows that some doc’s warnings of certain doom without evidence are not the reality for some. Now I am hoping a weighted vest, all the supplements needed for bones (not just Ca and D) and exercise will help. Have a read of Bones by Lara Pizzorno, which shows all the things you can do. She is very against just in case AA prescribing but even if you don’t agree, the information, even on what exercises are useful and which are not, is invaluable.
I thoroughly recommend looking at FAQs - Once you're 'in' FAQs, scroll down the list, on the left-hand side of the screen and look for Bone health You will find all sorts of helpful information. Because I have been in this forum for 3 years, there's a lot that was familiar to me when I looked recently. But the short video (despite the (in my view) rather cheesy photo) 'Reverse Bone Loss' was a very welcome addition to what I thought I knew.
I was also prescribed AA along with pred at the start. After about 14 months, it was substituted for denosumab because my abdomen was so bloated. However, this did not seem to change anything, and I think the bloating was due to uncoated pred. I had a good Dexa scan result, but then, puzzlingly, the PET/CT scan after 1 yr of AA showed up two recent spinal compression fractures. So I can't come up with a simple answer!
No, I have only had one six-monthly injection. The timing was as follows: March 2020 Pred, AA etc; normal dexa scan Nov (better than previous one 5 years previously, which showeed osteopaenia); vertebral wedge fractures sometime during that period; switch from AA to Denosumab June 2021. I did ask the rheumy why the fractures could happen with normal dexa scan, but he just said that anyone can get fractures. But I would have thought that you would have to have at least poor bone density or an accident.
The only report I got from my Dexa scan was that I had osteopenia but not at a level that requires "treatment". Not sure what that means - but I was prescribed AA, and decided to take it hoping it wouldn't be for too long. Thankfully I didn't get any side effects.
The term osteopenia covers a wide range - from almost normal at one end to almost osteoporosis at the other - and that is a figure plucked out of the air, there is no real evidence for it. So the top quarter or so of the range is regarded as not requiring any intervention except exercise and dietary measures. Mine is about there and I have never taken bisphosphonates - apart from 4 tablets before having done my own research and discussing it with a different GP who agreed with me ... Even now after 12 years on pred the local osteoporosis guru considers it fine.
Well! Yet again I feel in good company! I also decided not to take AA as the side affects sounded dreadful! I have had two DEXA scans so far (I am about seven years in to all of this) and they have both been fine and in line of what to expect at my age.
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