I had had a DEXA scan recently . My last scan was 2 years ago. The scan has shown significant osteopenia with a T-score of -2.4 in the femoral neck. The rheumatologist calculated my FRAX score, My major fracture risk is 21% and hip fracture risk 6.9% in the next 10 years. I am on 6mg prednisolone presently, which increases the risk of fracture.
I have been offered bisphoshonates tablets or zolendronic acid infusion. I am concerned about long term side effects- specifically necrosis of the jaw.
I am interested in any one who has experience with these treatments and any views related to which treatment may be more desirable .
Thank you in advance for any advise
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Belfastman
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Have you talked to your doctor about your worries? Many thousands of people take bisphosphonates who are diagnosed with osteoporosis. I think I am right in saying that pretty well every drug has some sort of side effect and it is a matter of weighing up the advantages against the downsides.
Yes I have spoke with the consultant - he understands my concerns, particularly a friend developed jaw problems. My dentist has said he would not do any major dental work, such as a transplant, if I were on this treatment
.. at the moment you have low bone density or osteopenia... but that doesn't automatically mean you will go on to get a diagnosis of osteoporosis.
I took Alendronic Acid for 4 years and had no problem whatsoever - but I was on high doses of Pred for GCA [starting dose 80mg] and having had a hysterectomy aged 37 thought it sensible. But I would say to anyone, check if you really do need it...
The risk of necrosis of the jaw with bisphosphonate tablets is extremely small, much much lower than the risk of a fracture you are being given. The risk with the infusion is higher but the risks that scare the dentists are almost always seen in cancer patients where they receive infusions every 3 or 4 weeks so are taking a dose that is anything from 12 to 17 times the dose used in rheumatology. In addition, there is the underlying pathology of the cancer they are being treated for which involves bone.
You need a full dental check including a panoramic x-ray to identify any potential problems and all dealt with before starting the bisphosphonate and then an ongoing high level of oral hygiene and regular hygienist appointments.
I recently started on Alendronic Acid after my DEXA scan results. I too was very concerned about the side effects. I had two very long chats with the nurses on the Royal Society of Osteoporosis help line and watched their video. It helped enormously and I have decided to go with it while on steroids. One thing they did say was I would be better with one infusion that would carry me through the time on steroids as opposed to taking the AA pills as it takes a full year to reach full potency. I have started these a year on from starting Pred so have lost out on some benefit. The first two years of taking bisphosphonates is much lower risk. My hope is to stop taking them when I reach a low dose of Pred and hope lifestyle changes will be enough.
My DEXA scan results (after 6 months on Pred) were similar. I've been taking AA for a year now and it hasn't had any obvious side effects so far! Royal Osteoporosis Society are very helpful...watch the videos and give them a call if any questions. They helped reassure me. I had a thorough dental check up before I started (including x-rays) and now go twice a year with at least 3 annual hygienist appointments although my dentist said he would be fine about doing any treatment - just surgery might be an issue but hopefully regular checks will avoid things getting to that stage! I'm exercising and eating more consciously to help my bones too. Good luck to you.
PS I get up early on AA day and actually enjoy the discipline and extra half hour to catch up on standing up chores!
I took Actonel ( risedronate) a biphosphonate about 15 years ago for osteopenia and was told to come off it after 5 years. Had no side effects. When diagnosed with PMR over a year ago I had another DEXA scan and am now very close to osteoporosis and my rheumatologist recommended taking it again. Having a sister with osteoporosis who has broken several bones I agreed and again have had no side effects and think the benefits far outweigh the risks, for me at least. I don’t know if there any difference between AA and risedronic acid.
I had a recent dexa scan too and mild osteopenia now in my hips. Was advised and rx Alendronic acid. Having done extensive research I decided not to take it. The concept is that it builds new bone but the bone it builds is not like our natural bone and is far more brittle hence the higher risk of fracture. I have Von Willebrand so already have a bleeding risk. Don't want a fracture risk on top of that. I taking vitamin d3/K2 every day, 3 different magnesiums one of which is a phosphate and incorporating a little more dairy in my diet. Lucky enough to have 2 daughters who are both personal trainers so they've come up with a resistance/strength training plan for me and I'm walking 1.2 miles a day with a view to building that up too. Hopefully this will keep me on the right path. It's your choice at the end of the day and everyone is different. I just decided there were more cons than pros for me.
Well certainly if all you have is MILD osteopenia! I have no objection to it being used when necessary but I don't think it should be used "just in case" long before the bone density is well down. And even experts say that - because if you use it for too long it may not work when you really need it to.
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