Bone Density scans - how often SHOULD they h... - Vasculitis UK

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Bone Density scans - how often SHOULD they happen if you're taking Pred. ?

Dbis22 profile image
11 Replies

I have just been told that my Lumbar Spine is crumbling (osteoporosis). I've been taking Pred. for 22 years at varying levels and, in that time, have had just ONE scan. Admittedly, my Pred. dose is currently low although I have had fairly high doses in the past. I am obviously extremely worried about this new development. A Chiropractor friend of mine was speechless! How often do / should people be scanned?

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Dbis22
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11 Replies
PatriciaAnn profile image
PatriciaAnn

I had my first scan several months after I started on the Pred - for a baseline. I have them every two years. I was told last time that if there hasn't been any change then possibly it will go to every three years. I am on a maintenance dose of 5mg Pred daily.

Patricia

John_Mills profile image
John_MillsVolunteer

John had 2 bone scans within 10 years but John asked for the second scan as he was quite worried he had been offered only one. He was taking high dose steroids in the first year and was taking 10 mg for over 5 years. The last 3 years he reduced them very slowly and except for a bit of a health scare over Christmas and New Year has not taken steroids now for nearly a year. His medication was daily Adcal and weekly Sodium Risedronate but these were stopped when John finished the steroids. Maybe it is a question we could use as part of a poll. I might also ask this question in the Vasculitis fb group too. Is there anything they can do to stop the osteoporosis from getting any worse? (Susan)

Jann profile image
Jann in reply toJohn_Mills

I was told that weight bearing exercises helped prevent osteopororosis. Walking was good but swimming was not a lad bearing exercise. I was told the scans would be every two years while on steriods.

John_Mills profile image
John_MillsVolunteer

After asking this question on Vuk fb group it does seem as there is no protocol or standard guidance. Some people have never been offered a scan, some have one every 2 years and some every 5 years. I think I will ask John to help create a poll for this question and the results will mean something and we maybe able to share the results with some of the Vasculitis Specialists.

Sheila42 profile image
Sheila42

I have been on Pred for the last 12 years, but now it has been reduced to 7.5 daily for the last year with weekly residronate. I have a bone density scan annually as requested by my Rhuematologist, I have never needed to ask for this procedure it is done routine

Sheila

Skipper profile image
Skipper

There is a very good website, Save our Bones which downloads lots of information to help Osteoporosis naturally with recipes and load bearing exercises etc. etc. Full of information.

Dbis22 profile image
Dbis22

Thank you all ...... I'll have a look at Save our Bones. Meanwhile, am waiting to see a specialist regarding my spine problem. Hopefully within about a week. Meanwhile, I'm fairly annoyed that my GP or previous consultant didn't pick this up but that's not going to solve the problem I have now which will likely result in a major change in my lifestyle.

On pred for 3+ years plus about 10g of methyl pred in pulses over a year. Took Alendronic Acid and Ad-Cal during the time and a scan at the end of the period showed normal bone density and I stopped the latter immediately. A repeat scan last year, some 18 months after I became steroid (and Alendronic Acid free) showed no depletion. I do however have quite bad arthritis in my joints.

lisa-ranyell profile image
lisa-ranyellVasculitis UKVolunteer

I was on pred for 3 years and never had a scan, since coming off I have had various joint problems and have arthritis in knees. Also have some degeneration in my lumbar spine but never any mention of bone density scans or osteoporosis.

mandijt profile image
mandijt

i have been on and off high and maintenance doses of steroids for 14 years and have never had a bone density scan. I am 46 (post menopausal) and have just been started on twice daily Adcal-3 and once weekly 70mg of Alendronic Acid. I dont know whether i should be concerned or not?

Dbis22 profile image
Dbis22

Doesn't seem to be any consistency. Will have to discuss with my consultant. I'm sure he will always err on the side of caution. Thank you all for the replies ..... most helpful.

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