Hi everyone,
I've been back to my GP this morning for blood results, all good, thyroid normal, been taking medication in increased doses for almost 1yr. full blood count was normal, and ESR was 9. So far so good, but he tried very hard to talk me into taking Alendronic acid, which up to now I've refused to take, because of the possible horrendous side effects. He's organizing a DEXA scan, but says even if it comes back normal, I should take the Alendronic acid, to prevent possible future bone problems as I'm likely to be taking Pred for some time. My rheumatologist said that with my diet (she asked how much milk, yoghurt etc I consumed) I shouldn't need a bone protector. I'm taking Calceous twice daily, which is calcium and vitamin D. Which way do you jump when there are two conflicting opinions. I want to do the best thing for myself but am quite confused!!
A very happy not so new year to you all. May we all have a fairly pain-free year. Cheers, Molly.
Hi Molly
It must be so confusing when you have different medics advising you to take different options :? At least a DEXA scan is being arranged so when you have the results that should make it easier for you to make a decision with regard to taking Alendronic Acid.
You don't say what dose of Pred you are on now but it has been mentioned on this forum previously that it is less likely for the steroids to affect the bones when on the lower doses.
My experience has been that at the outset of PMR and steroids, my bone density was normal. However after more than a year on the medication a further DEXA scan showed Osteopenia (the stage before Osteoporosis). I did start on 40mgs so perhaps I could expect my bones to be slightly more at risk from that dose. I have never taken any bone protection meds as I only have one kidney which is not filtering at 100% and additional calcium meds could adversely affect that kidney. I will have another DEXA scan during the summer but meanwhile have relied on daily milk, yoghurt, hard cheese a couple of times a week and oily fish several times a week (if sardines, I mash the bones up and make sure I eat those too in order to get the maximum benefit for my bones).
I believe our mrsk has so far survived the steroids without any such supplements or loss of bone density so it is apparent that not everyone needs such extra protection. She will appear and put me right if necessary, I'm sure. :lol:
Hopefully, your DEXA scan will be normal and you, too, will be able to take your rheumatologist's advice and avoid any extra supplements but
rely instead on a calcium-rich and omega 3 diet.
Good news with all the blood tests results and do let us know the outcome of the DEXA scan. Meanwhile, best wishes for 2011. 8)
MrsO
Hi Molly and Mrs O,
My Rheumatologist put me on Alendronic at my first appointment but I think her main concern was the effect the Prednisolone might have on my crumbling knee (I know - I need a new one, I just keep thinking of reasons to put it off, I'm a coward!!). I've been very lucky in that I haven't had any side effects from it (that I know of). I'm almost down to 4mgs (I'm the one on the slower than slow reduction!) and have an appointment with the Rheumy in a few weeks time, by which time I'll be down to 3mgs with a bit of luck. I'm hoping she'll suggest coming off the Alendronic by then. Be nice to kick at least one tablet into touch. Its always difficult when there are conflicts regarding medication and as Mrs O says, we're all so different, what's good for one can be very bad for another and visa versa. This PMR certainly keeps us on our toes doesn't it :? Keep well.
Regards Lizzie Ellen
Hi Mrs O,
I was put on 15mg on 12th October, and have been reducing slowly by 1mg at a time, since Dec 1st, 15 days on each dose, so have now been on 12mg for 1 week. It was suggested I came down 15-12 and a half then 10, but I asked to do it more slowly than that, having read on here the problems people have with a too quick reduction. I want to take it nice and slowly and perhaps get away without any increases, until I get much lower anyhow. I'll discuss the alendronic issue further with my rheumatologist when I see her next month, and then make a decision I think.
thanks for your reply.
Best wishes,
Molly.
Hi mollycoo - I posted about this a few weeks ago. I was told by a rheumatologist that the majority of the bone density loss occurs in the first 3 months so, if after that period you have a normal or near-normal DEXA scan there seems to be little need for the alendronic acid.
One of the theories being bandied about by some doctors is that \"prevention is better than cure\" so if you start a patient on longterm steroids they should also get the \"bone protection\". However, not every patient will develop loss of bone density - there are other factors involved. If alendronic acid were a drug which was not accompanied by certain downsides there would seem to be no objection about that idea. Unfortunately, however, it is linked to a few very nasty longer term side effects, including an increased risk of oesophageal cancer, so that the last recommendations I saw said it should not be taken for more than 5 years. There is mixed evidence about whether it prevents fractures and I feel quite strongly that a baseline DEXA scan is a must - if that were to show any reduction in bone density at the start then the alendronic acid could be considered, but I still don't think it is essential at that point. The scan can be repeated after 2 years - it is so variable in its results that a shorter gap is pointless - to see what changes have occured. It should be used once there is evidence of a problem starting - not earlier. The reason it is used the way it is is because the company who developed it created a market to help their profits - I know I sound cynical, but they financed the studies their recommendations for its use are based upon and I'll lay odds they only published the ones that supported their end. And now the original drug is no longer under patent protection so cheap generics can be made they have developed newer slightly different versions and are pushing them as being SO much better.
I'd trust the rheumy ahead of the GP here I think - though my GP was the same opinion as your rheumy. I don't take alendronic acid, have one oseopeneic vertebra and noone feels I need AA - and it's fine for me to ski, I was told!!!
good luck in your decision (of course, you may be one of the many, many people who CAN'T take it!)
EileenH
Hi EileenH,
many thanks for your reply. I didn't know about the 2year gap between scans. That's quite a long time, and a lot can happen in that time can't it? I thought more frequent scans would be an option, possibly every 4-6 months, and I've been on pred for 3 months now, so any potential damage has probably already been done!!
We'll see what the scan shows, and what my rheumatologist says next month, I don't want osteoperosis, but neither do I want to risk the possible nasty side effects of the alendronic acid. Decisions decisions!!
Again, many thanks for your interest.
cheers,
Molly.
Mollycoo - that's my point: if the scan shows nothing dramatic now you've been on the steroids for 3 months the likelihood of anything much more happening as you go onto lower doses is much less. The primary problems happen when you are on high doses of prednisolone, that means above about 20mg as has to be used a lot in other diseases and, in our case, if there is a risk of GCA. The doses we take long term in PMR are actually relatively low and so associated with far less risk. The only real problem is that some people will have osteoporosis for other reasons.
But there is also not a lot of evidence that taking alendronic acid will prevent the fractures - and that is the reasoning behind wanting us to take it. You might never have a fracture even with quite advanced osteoporosis and I feel it is better to keep the alendronic acid for when there is some evidence you need it rather than taking it for years without real need. Remember how we were to take HRT as the answer to all our menopause problems? And now they have changed their minds. The same thing is starting to happen with alendronic acid - keep it for when there is real justification.
cheers, EileenH
Thanks EileenH--------Molly