Ostopenia

[Anna21]

I have had PMR for 3 yrs +. Just had bone scan, I have been told I am Ostopenia in the bottom of my spine and hip. I have been on Pred for 2yrs, now taking 8mg. Wandering if anyone has any advise on the next step, before I see my G.P.

[PMRpro Ambassador]

Osteopenia is the stage before osteoporosis - and what you do (or rather your doctor does) now depends on the readings from the scan. If they are only just into the range for osteopenia the usual action is to have another scan in 1 to 2 years and see if it has got any worse. If they are closer to the osteoporosis end of the range your doctors may decide they want you to take a bone protection medication now other than calcium and vit D.

Although - are you already taking alendronic acid? Many patients on pred are given that pretty much as standard - something I disagree with personally and I don't take it and my dexascan hasn't changed from before pred to now: I have slight osteopenia in my lower back but the hip is fine, right in the middle of the range for my age.

However - don't panic! You aren't going to crumble in a small heap any time soon!

[Celtic PMRGCAuk volunteer]

Hi Anna

I, too, am in the Osteopenia range with my spine (hips ok), diagnosed during my steroid days - whether that was new onset, I don't know as I'd never had a DEXA previously. I wasn't prescribed any bone protection meds during my 5+ years on steroids (starting dose 40mgs), not even the usual calcium + Vit D. As PMRpro has said, it really depends where on the scale you are - do you know your reading? Bone protection has not been suggested for me nor many others I know in the osteopenia range, most of whom just take calcium and Vit D.

[Badgergirl in reply to Celtic]

My doctor told me not to take calcium supplements. He said it increases the risk of heart attacks and it is better to consume calcium from foods such as green leafy vegetables instead.

[PMRpro Ambassador in reply to Badgergirl]

I'm afraid your doctor needs to get his facts right and read the medical papers and not the media papers! The research identified a problem in otherwise healthy people in the general population who took excessive calcium supplements without added vit D. Provided people took both there was no problem, nor was there a problem for patients with a medical reason for the supplements.

When you take pred it makes you get rid of more calcium in your urine and by taking more you ensure there is enough for the bones to take up and make new bone, something that happens on a continuous basis. You need vit D for calcium to be absorbed into the bone - if you are short of vit D (and most people are) the calcium is deposited in other parts of the body, often the walls of the arteries, instead of the bones.

Needless to say, the media grabbed the headline without reading the original paper which made this difference clear. I won't deny that dietary calcium is better for you than tablets - but it is quite difficult to get the amount of calcium you need when on pred by diet - and green leafy veggies may have plenty of calcium in them but your body can't absorb it:

"Broccoli and dark leafy green vegetables are well-known for their high calcium content. Even though they can provide an alternative source of calcium versus dairy, your body has a hard time absorbing calcium from these veggies. If you rely on broccoli and leafy greens as your primary source of calcium, have a talk with your healthcare provider. Your body may not be getting the calcium it needs."

And that is for "normal" people! It is dairy you need - and then you have the dietary fat problem! Also, patients who are on anticoagulant tablets (warfarin) must not eat too many green leafy veggies. It's a rock and hard place - but calcium/vit D supplements are OK.

I do wish medics had listened to their physiology/anatomy/pharmacology lectures at Uni...

[Badgergirl in reply to PMRpro]

Apologies for the late reply. I was unable to move my right arm last night and this morning! What you say PMRpro makes sound sense. Admittedly I didn't necessarily agree with my GP about the calcium supplements and shame on me for not researching into this. At the time he said this I assumed he meant because calcium is essential for blood clotting. It stands to reason though that with the reduced bone mineral density caused by pred we need to replace the lost calcium with supplements and to ensure it's absorption with vit D.

[polkadotcom in reply to Badgergirl]

Just interested - what would he have recommended to someone unable to eat green leafy veg?

[Badgergirl in reply to polkadotcom]

I agree with PMRpro that dairy is a good source - but not too much animal fat. Skimmed milk is good and also soya milk. Tofu is another good source as are salmon and sardines (particularly when eating the bones of the latter) and nuts.

[PMRpro Ambassador in reply to Badgergirl]

Semi-skimmed milk is better - you do not absorb calcium unless it is taken with a small amount of fat. Although technically skimmed milk has more calcium than semi-skimmed -you absorb far more from the half fat version.

I love fish, and don't normally have problem with bitty food - but the one thing I cannot cope with is sardine bones! Such a shame.

[Anna21]

Hi,

My bone reading was -1.5. I have never eaten meat or fish, I have always been careful not to eat too many dairy products, I will increase them now.

The only supplement I have taken is Vit D, as it was very low. I still manage to do Pilates, I will try to do more exercise. Thanks for responses. It helps to think things through before I see the Doctor.

[PMRpro Ambassador in reply to Anna21]

If you are vegetarian you should really have been advised to take calcium/vit D supplements since that is one of the downsides of being veggy, especially when you restrict your dairy. I imagine the GP may agree - and may also encourage you to think about more powerful stuff.

I think Pilates is wonderful when you have PMR but it doesn't really help with keeping bone strong - it must be body-weight bearing so the bones feel the effect of your feet meeting the floor which makes the bone bend or compress a tiny tiny bit and that stimulates it to make more bone. Doing stairs - especially going down - is excellent. If you struggle with going up because of the PMR - catch the lift up and walk down!

[Celtic PMRGCAuk volunteer]

Anna

With that reading there shouldn't be too much to worry about. It is within the Osteopenia range of -1.1 to -2.5, after which the diagnosis would be Osteoporosis. My hips are fine but my spine is -2.0 (Osteopenia), although, as I said in my previous post, it has not been suggested that I need medicating.

[PMRpro Ambassador]

I wasn't getting into the fat/carb argument - diabetics still have to be careful with the dietary fat and it also could upset stomachs if you eat too much cheese!

[jinasc]

When you say take a 'supplement of Vit D', how much?

The recommended daily maintenance dose is 1000 units per day. You can buy these OTC at Boots (tablets made in UK) for £5 for 90 days supply.

Low Vit D causes aches and pains just like PMR and you should be tested for low Vit D as an exclusion test before PMR is confirmed.

[Anna21]

My blood test 3 yrs ago showed very low Vit D. Last test showed higher level. I was taking 2 tablets, now 1, I think the dose is 500 units each.