How very annoying

[Rjw2014]

I have diligently taken my calcium and vit d, and even my ale droning acid since starting on pred in September, and have as always eaten a healthy diet. I walk one and a half to two miles a day with the dog, and also look after my horse, mucking out his stable every day as well as sweeping and grooming etc. I had a deas an the other day, and was expecting to be told I was keeping on top of bone loss, and hoping that I could stop the alendronic. Instead apparentl I have osteopenia! In fact the report says it recommends me starting on vit d and calcium but does not yet think I need alendronic, as it would seem the rheumy was not aware that I was already taking both even though it's in my notes! So I am now thinking I would have been on serious trouble had I not started prophylactic treatment immediately.

[Rjw2014]

Wretched predictive text. That is alendronic acid and dexascan

[Runrig01]

Did you have a dexa on starting Pred? My Rheumy felt it wasn't necessary because of my age, I was 47. So I arranged a private one which showed moderate Osteopenia with a T score of -1.91. I was put on AA, was already taking Adcal D3. I had it repeated recently having been on Pred for 2 years, and my bone mass has improved by 3%, so AA has been doing its job, so the recommendation was that I continue. Everyone is different, there are others who have never taken calcium or AA and their results remain much the same with no bone loss. At the moment there is no way of foreseeing who will get which side effects, although there is research looking at this.

[Rjw2014 in reply to Runrig01]

I didn't have a dexascan on starting, so I suppose I might already have had osteopenia given my age (66), but I am so active, and when I was trampled by my horse I didn't even break a rib, so I was told I have very good bones!

[Runrig01]

I like yourself have always been extremely active, and ate a healthy diet, yet at 47 I was told I had Osteopenia. My dexa scan shows an area in my left hip that she says is in the osteoporosis range, it was virtually transparent. But the result when combined with the spine to give total t score, put me in osteopenia range.

[PMRpro Ambassador]

Ah yes - but did they check your calcium and vit D BEFORE putting you onto the medications - especially the alendronic acid? If your calcium and/or vit D levels are dodgy the AA doesn't work. The vit D part of the supplement is too low to correct a seriously low vit D level so a baseline vit D must be done and if it is depleted rectified using high dose vit D before the AA is started. High dose means 60,000 IU per week for several weeks - the supplements give you less than 6,000 IU per week and it takes months and months to improve a low vit D with them.

This is stated very clearly in the AA data sheet - but it is blatantly obvious that most GPs have never read it since there is such a fuss by most of them about getting a vit D level done.

[Rjw2014 in reply to PMRpro]

No checks on calcium and vit d, but I have taken fish oil daily for years and also eat plenty of green veg and cheese etc.

[PMRpro Ambassador in reply to Rjw2014]

Doesn't mean your vit D was optimal though...

[Green_girl]

It was explained to me by a well-qualified nutritionist that caffeine and stress will both contribute to loss of bone mass. I have given up caffeine and with counselling have tried to calm down about things. As PMR Pro has said, many of the vits given by the NHS are at a very low dose. Getting calcium via your diet and Vit D via the sun are the best things - but as you age and with our lack of sunlight, extra supplements taken under supervision are sometimes needed (you can take too much calcium, so get advice before ramping up doses!).

Also, your bone mineral density can be hereditary......

And Pred can have a horrid effect on some people's bones, however good they were before.

As to the strong bones - Doctors are mainly concerned with spinal and hip fractures - and these are the bones that Osteoporosis mainly attacks and that are most dangerous. Like you, my other bones are in great shape - but the lower and top of my back are suffering.

I'm 62 and if I look at the FRAX tool I'm just on the line of the curve showing I need treatment (shef.ac.uk/FRAX/tool.aspx). To do the test, you will need to input your DEXA test scores.

Like you, I have always been active, done tons of weight-bearing exercise, never dieted, never smoked, never had children, not aware of it in the family and would have thought there is no way I'd have osteoporosis......and like you, shocked to the core (and feeling slightly insulted!) to find out that I have it. I'm fighting off taking AA after a discussion with the GP, based on the steps I am taking post Pred. If this is still 'positive' at the next scan, then I will have to bite the bullet that is AA.

Look up everything you can, review your personal risk of spinal or hip fractures, look at diet, stress and your family history.....maybe you will find something that explains it, or might help you to take more action.

Hope that helps - and thank goodness for the summer coming and there's less mucking out to do!!