Aledronic Acid - Should i take it or not

Anhaga,  I don't  know if the 'take or don't take' position is that clear. Upon diagnoses of PMR, most patients are NOT immediately given a Dexa scan to check their bones and in the medical text books there is a recommendation to prescribe AA or similiar for a limited period as bone protection until a scan is done. The reason for this is that, with PMR, you are immediately placed on high-dose steroids for the first few months at least and it is precisely during  this period when all the bone damage can be done.  For mysell, I had a scan just over 3 months after starting 20mg Prednisone with a 'severe OP in back' result. It's unlikely that it was only the steroids that caused such a result, my scores must have been poor beforehand, but the 14 weeks of high-dose Pred. sure didn't help. I wish I had been on AA until I got the scan and then further decisions were made re. treatment. However, in saying all this, I am well aware that there are some whose bone scans are completely normal during and after long periods of steroid use. . . .        J

Hi Juno.  I do appreciate your points. I only got a scan because I asked for one.  Since then I've learned the standard in my community is for all men and women to be given a scan at age 65 or if as an adult they've had a fracture which could be considered a fragility fracture.  As I had a fracture when I was over 65 but before PMR I should have been offered a scan at that point.  But no mention was ever made of it.  Prednisone became a third risk factor (age, previous fracture, steroid treatment).  So I too got my scan three months into steroid treatment and was diagnosed with low bone mass, which with the other risk factors placed me into a high risk category.  But even had my t-score turned out to be worse than it is, I would never have taken a chance with the OP meds.  My personal feeling is that much more needs to be done by health care professionals to make sure people understand the importance of bone health and how from an early age they can look after themselves.  Coming along behind with dangerous medications to glue the pieces back together has to be the worst possible kind of "care".  BTW eight months after the scan I'm halfway through a two part clinic on bone care for ppl with osteoporosis (or risk), and this is the first point at which I've been offered by the establishment anything connected with non-med treatment for OP (other than calcium and D), in that there are sessions on exercise and nutrition included in this clinic.  Furthermore it was I who sought out the clinic having been alerted to it by a casual conversation with an acquaintance. 

Knowing the risks immediately after starting pred I began to walk over an hour every day and, of course, being highly motivated and energetic because I felt so much better did a lot of heavyish exercise, like lawn mowing and stuff.  Possibly bad for PMR but helpful for the skeleton.  

All very well - but that is an ideal that would have to be started about 30 years before you develop PMR! And you being able to walk for an hour a day puts you in a fairly lucky group - very many people CAN'T do that.

I don't take any "bone protection" drugs other than calcium and vit D, my bone density didn't change over a period of 4 years so I'm pleased that I did reject them when I did. I'm due another - who knows what it will be. But I WOULD consider taking something if my bone density had fallen to osteoporitic levels and my balance and other risk factors were bad. 

Many orthopaedic specialists DO support their use - they are, when all is said and done, the people who have to pick up the pieces when an elderly person has broken a hip. Even these days it is a major operation and many such elderly patients are never able to live independently again. Many specialists are convinced of their value - it isn't a simple debate however.

Well, I think that backs up my point that we should be getting much better education about bone health throughout our lives.  I consider myself fairly well-informed, and I proactively started taking extra calcium and D when I was about 40, I guess.  i started walking in mid life as well, not for bone health but because of profound depression (which, being me, I was not prepared to blunt with drugs).  It was that habit, plus the nature of my work when I finally got back into the workforce which were probably my saving grace.  I'm not athletic, never have been, so any health I have is just from living a pretty standard lifestyle but being aware, and careful.  I can't credit what health I have to being lucky.  In fact I think the lack of education, despite my best efforts, was kind of unlucky.

Anhaga, I'm making a presumption here but I'm guessing that you have private health cover (as have I). So, a scan can be arranged easily within a couple of months for you or me. A public patient in this country could wait a year or more for a 'routine' Dexa scan. This person could well be 'high risk' for fracture in this period and hasn't a clue. Surely a 'cover period', hopefully short,  on AA or something similiar is better than a possible major fracture?  

I remember just after my PMR diagnosis,( and while on my 20mg. of Pred.),  I went off to our holiday cottage and spent 2 weeks shifting 2 tons of gravel in barrowfulls to improve the driveway. No doctor had even said to avoid heavy work, let alone suggest medication for a short period. Three months later I had a scan and all I could think then was ' God, this was extremely risky behaviour.  Ignorance was bliss. . . .  .  Of course, maybe my bones are stronger than they seem, or maybe I was just lucky, very lucky. .     J

Juno, we have universal medicare in Nova Scotia.  I'm entitled to basic medical care, which includes a scan if prescribed.  The recommendation from the first scan was that a follow-up should happen within one to two years.  I'm already booked for my next scan (in October) and there's no cost to me nor to the additional plan we have from my husband's retirement health coverage.  I did have to wait a couple of months for the first scan after I asked for it.  There is no parallel private medicine in this country, although many things are not covered by the universal plan so they have to be paid for privately.  So I would not be able to go private for this scan even if I wanted to.  Most of us are fighting very hard to maintain and improve this universal coverage and prevent the introduction of private clinics.

Second point, thin bones do not necessarily mean brittle bones.  In fact they could be healthy and flexible and less likely to break than those of someone with better bone density as measured by the machine, but less flexible.  We were told at the clinic that there's no way to tell how healthy the bones really are without a sample of bone tissue being extracted from deep inside the bone.  Not going to happen!

Anhaga, "thin bones do not necessarily mean brittle bones". I keep telliing myself this and I really hope you're correct. Unfortunately, thinking of the old bell-shaped curve from my statistics lectures, being at either end of this  curve (of t-scores)  increases the RISK of problems - or fractures in this case. Hard to argue with the numbers . . . Really, for me, whether I'm optiimistic (as you always seem to be) or not, depends on the day that's in it. . . .! The Celts generally are a melancholic bunch. .    Take care,  J

Am I optimistic or in denial?

Wish I knew!!    But from my 37 years working in a hospital I've learned that without hope there is nothing . . . .     J

I totally agree with all you have said! I have been researching the bone density drugs since my rheumy recommended it because of the long term pred use. I have a bone density test scheduled next month but I think I will cancel it since I will not be taking the bone density drug regardless of what it says. I take calcium, vitamin D, vitamin K2 and have a healthy diet and get plenty of exercise. Difficult to decide because of all the pros and cons available to read. I also feel a certain "vulnerability" about adding another drug to the pred mix...I have had some weird reactions over the last 2+ years on pred. Bad side effects from medications may be infrequent, but a real bummer if it happens to you!...and may be permanent.

I think I would have the diagnostic test of bone density anyway. At least then you will know if your bone strengthening is working OK. It does not mean you have to take AA or equivalent if you don't want to.

Definitely get your bone density measured.  It's an easy procedure and will give you information.  The chances that you will be reassured are as good as the chances you will be concerned.  Knowledge is power!  And as Ptolomy says, you don't have to take drugs if you don't want to.  My t-score last year was -2.  I'm very glad I know that.

I am still not clear on this. Why have the bone scan if I will not consider it??

I am not, at this time, willing to take the bone density drugs....period.

If the scan showed osteoporosis I still would not take the drug.

You see, I also do not trust the DEXA machines.....financed by the very pharmaceutical companies that promote the bone density drugs. Your "bone density" measure does not mean "good" density. My opinion.

 

Kathy- I think it makes sense to have a scan to determine whether you have osteoporosis, which can be a very dangerous condition.  Spinal compression fractures can result in chronic pain and limited mobility. People who fracture a hip face disability and a lowered life expectancy. 

There are alternatives to AAs for preserving bone strength- vitamins, diet

(perhaps some benefits to gluten-free), weight-bearing exercise, and avoiding medications that make you more susceptible.  Even if you are doing these things, I think it is a good idea to find out whether the steps are adequately protcting your bones and to provide a baseline for comparison in case the prednisone makes things worse.  

I'm not pro-AA, but I think the dangers of osteoporosis are underestimated.  This is just my opinion in this morass of pros and  cons.

The DEXA scanners are not financed by the pharmaceutical companies - they supplied the ankle bone devices which are used by many of the screening "clinics" and pharmcies but they are very unreliable and are not dexa scanners, they are a very different item.

If you have a scan and the results are fine you may find doctors accept your refusal to take the drugs and, like me, you know where you are. If you have a scan and it is very bad you can look at other options.

Snapperblue has listed the other reasons - because if you have severe osteoporosis and develop spinal fractures it is a very different matter.

The real DXA scan is painless and simple.  You may find your mind is put to rest if you have a good result.   If you think there is cause for concern with your result you still know what you are working with.  No one is ever going to force you to take medication for your bones that you don't want.  My doctor is disappointed in me, I think, but she isn't trying to push too hard, and she knows I'm doing everything else possible for my bone health.  But for me it just makes sense to have as much knowledge as possible.  The scan is one tool in your toolkit.  The other things include your general health, your willingness to modify diet and exercise appropriately, and get enough rest as well as activity because the bones get built when we sleep - after a day of activity to stimulate the osteoblasts!  But there may be other things going on in your life which are leading to bone thinning, and it's a really good idea to figure out what those things are, above and beyond medications like pred.  

I do believe that there should be a lot more support from the medical profession for people like us who would appreciate guidance regarding exercise, diet and other factors affecting bone health.  Just having a questionable pill tossed at us does not, to my mind, constitute good care.

Kathy, do listen to the others, a dexascan diagnostic is of real use to you. You then have a bench mark to work from. Also some people are not even offered one and have had to fight for it or even pay privately to have one. Take advantage of the fact you have been offered one. Probably everything will be fine and even if things are not one hundred per cent, at least then you can boost up your current methods of improving your bone density.

Exactly my sentiments. I refuse to take another DEXA .I know I have ospeoporosis but  refuse to take the AA. If I take another scan and it has gotten worse I will worrry myself sick abuot moving around. And with all that's going on in my bodyI can't take that (I have PMR for the second time and in denial that I have GCA) (Tender scalp and neck pain but normal blood tests.)

Please get your eyes checked.  Prednisone is better than blindness.

I get my eyes checked every 6 months. So far so good.