Am still struggling to decide whether or not I should be taking AA! I have no reason to suppose I have a bone density problem, and would prefer to be taking a really good quality vit c supplement, yet my GP says this would be inadequate.
From all I read on the subject, it seems the full side affects of AA are not yet known, though the dentistry element already features as one side effect, and I am due to have a loose tooth treated (I hope) shortly.
Currently, I am still taking the AA, as I am on a fairly high dose of steroids for PMR - 25mg. I expect to reduce to 20mg this week.
If I get a scan, and the result is ok, what advice would you give about continuing with AA?
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Charlie1boy
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A vitamin C supplement isn't any use - I assume you mean vit D? You should be on calcium and vit D anyway. That is absolutely standard and is required alongside AA as well - if you don't have adequate calcium and vit D levels then the AA won't work properly. Your calcium and vit D levels should have been checked before you started taking AA and sorted out if they weren't correct. Vit D should be above 75 - anything lower is inadequate.
Whether you should be taking AA or not is only to be seen on the results of a dexascan. The BSR recommendations say that should be done unless you are over 65 or have already had a fragility fracture - why 65 is beyond me - since I know nearly 80 year olds with excellent bone density and several 70+ year olds are also fine! They should be given AA. Otherwise a dexascan should be done and calcium and vit D prescribed as a matter of course in the meantime.
and then look at the lefthand side of the homepage you will find a link to useful medical information where you can read the guidelines for yourself. You might find it interesting to see how the recommendations and practice match up - or not!
So - how old are you? Have you broken anything before? Proceed from there. Even I have nothing against AA used properly - i.e. when genuinely required and with the appropriate safeguards and monitoring of blood levels. But I was handed them like sweeties - took 4 and decided I wasn't happy. The GP I discussed it with agreed ("It seems they aren't as innocuous as the company claimed" he said) and after 4 years of pred at over 10mg the entire time my BD was unchanged just with calcium and vit D.
Yes - my fault. I do mean calcium, and I am taking a vit d supplement. There was no mention of checking calcium and vit d before being started on AA. Is this checked via a blood sample, or by how many supplements I am taking.
I am 75 years old, but have no problems breaking bones.
It really does seem to me that it would be best to get a dexascan first.
Yes, just a blood sample - that is exactly my point! If either is not adequate then the AA won't do any good. If the vit D is low - and it is in 80% of the population where I live in northern Italy where we have enough sun all year to make vit D. Really not a lot of chance in the UK - you can only get about 10% of your daily requirement from diet so diet doesn't help though I've heard GPs insist a good diet means you will get enough.
Yes, it is best to have a dexascan but unfortunately the GPs tend not to see it that way. Some areas have very long waits for them to be done and there is an assumption that if you are over 60 you are crumbling away! AA was originally marketed as totally safe and it would save all your elderly patients being at risk of a fractured femur - so you can hand it out like sweeties and forget about osteoporosis. But, like everything else, it isn't as simple as that. In the meantime, the FDA have issued warnings not to give it for more than 5 years without a break as after that the risks of the nastier side effects increase noticeably.
You will hear "oh but they are rare" - yes, they are relatively rare at present but although bisphosphonates have been used for a very long time (some 50 years), they have only been in very widespread use for something over 15 years and it is only when something is used in a large population you find the true incidence of side effects. They don't know enough about the use of them in a relatively healthy population to know the true rate of long term problems.
I am 55 and had been told by 2 Rheumy's ( including the wonderful Prof. Dasgupta) that I must go on AA because the steroids "take your bones". The second time I tried it, last summer, I noticed that I was getting increased pain in my hip and when I stopped taking it, that pain went, so I have not taken AA since.During this time my lovely GP offered to refer me for a DEXA scan anyway ( my first Rheumy said he wouldn't as there was no point, even though I was a private patient!) which showed my bones to be better than average for my age, even after 1 year of Pred. The Prof. then said that DEXA scans aren't accurate. The messages are really confusing, but I have decided not to take AA for now and hope to have another DEXA scan in September, two years after the first one.
If they aren't "accurate" then why do they do them at all?
Perhaps he means that the whole concept of osteoporosis is a number plucked out of the sky? Which it is. They looked at it all and said "we'll draw the line HERE, above you are fine, below you are about to crumble". It is mainly driven by a large pharmaceutical company's marketing to improve their profits.
There is not a massive amount of evidence that reduced bone density is the primary cause of broken hips (which is their terror story) - there is a whole range of things that are even more likely to lead to a fractured femur in the elderly. Like poor lighting, low vit D status, dehydration (particularly common), postural hypotension due to overmedication especially for hypertension, trailing cables, wearing sloppy slippers, slippery rugs, pets running round your feet (as per HMQ and her decision to not have more corgis) and other health problems making you wobbly.
I don't mind the concept of taking a medication where there is reasonable evidence of need - but I'm far from convinced about this one. Why don't they put it in the water if it is so wonderful and any means of measuring what it changes is totally unreliable anyway? Bah!!!!!!
I had to stop taking AA and just had calceos while I had PMR. When my bone density was checked after hip replacement I was told it was "amazing" for my age ( 82 ). I had been taking Prednisolone for more than seven years altogether. Really, that was the word the consultant used. My partner broke her arm aged 83 and, again, seemed to surprise the medics. " A far better outcome than I envisaged", he said. Well worth having a dexa scan before dishing AA out to all on a just in case basis you would think.
Best wishes for your reduction and do follow the link from PMRpro Loads of help and encouragement there.
My GP, reviewing my PMR said I ought to have a Dexascan and said he would organise it. I had it, on the NHS, a week later. It showed I have osteopenia and I was prescribed Risedronate. I started taking it 3 months ago, after discussing its potential side effect of osteonecrosis of the jaw with my dentist. I have a broken wisdom tooth which still causes me absolutely no pain at all.
I read somewhere that it takes 6 months to start working ( I have one tablet a week). I have extremely long legs with a 37inch 'inside' leg. I did feel that if I fell over my bones would crumble but don't have that feeling any more. The last and only time I've had a bone fracture was 50 years ago when I fell over the week before taking my A levels, breaking the wrist of my writing hand. (As a result I had to dictate my A level answers to a Science 6 former, spelling out difficult words thus "M I double S I double S I double P I".)
As for my PMR, diagnosed July 2013, I am down to 6 days at 5mg and one at 7.5mg. I'll drop to 5mg in about a fortnight. My GP let's me go at my own pace, and prescribes me 5 months supply of pred at a time.
My only pain these days, or more correctly, evenings, is upper thigh pain. My knees can also be painful, except when I exercise.
Thank you to Suzy, Betty and Thomas. You all are confirming my thoughts on Alendronic Acid. I am going to get a scan on NHS if possible; if not I will get it done privately.
It has been brilliant to get so much support from everyone, whether being referred to informed papers on the subject, or from individual experience.
This forum is proving a real bonus, as I am just at the beginning of PMR journey.
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