DEXA Dilemma update

[Nerak12]

So, I had my private DEXA scan today and sooo glad I decided to shell out for it. Result is, despite taking supplements, watching my diet and eating all the right things and taking daily exercise over the past 2 years my bone health has marginally deteriorated. Haven’t got full report yet but a bit of a disappointment and serious conversation and decisions to be made with Rheumatologist on Monday 🤔

[SnazzyD]

Yes, that must feel a bit discouraging. I got to face the same music at some point soon as I’m 2.5 years down the line from the last. Anyway, it would be good to get your numbers first. Getting your ducks in a row regards your wishes before the consultation may make you feel more in control of the outcome.

[Nerak12 in reply to SnazzyD]

I felt pretty low after receiving the news I have to admit, but the OH and I are going to my Rheumatology appointment on Monday with lots of questions written down. Pity the poor young registrar having to deal with an inquisitive nurse & lawyer first thing on a Monday morning!! 😱😂😂

[SnazzyD in reply to Nerak12]

Well all good character building stuff 😂

[DavidMF]

Have you been taking ADCAL ? (Calcium & Vit D3 Tablets) Just found out my cousin started 3.5 years ago and gave them up. Doctor didn't question why he wasn't asking for the tablets !!

[Nerak12 in reply to DavidMF]

Hi David. Yes. I’ve been on AdCal equivalent for 2 years, plus calcium rich diet and daily walking 2 working dogs. Should have been advised to take supplementation post surgery & early menopause in early 2000’s! Doctors are not switched on enough to the need to supplement. I was told a piece of cheese the size of a matchbox each day would be sufficient. As a nurse, I should have known better!!

[PMRpro Ambassador in reply to Nerak12]

Depends on the cheese - but parmesan is the highest calcium cheese and a matchbox piece still doesn't have what we need altogether.

[Nerak12 in reply to PMRpro]

Yes. I realised that when I did more research into levels required to provide adequate supplementation 2 years ago, so I’ve been shovelling in the cheese, yoghurt, milk & other foods every day since. I was not very pleased with the GP who set me off on a false path all those years ago. It’s funny really, because in the years just before I retired I was dishing out nutritional information left right and centre to my frailty patients about the importance of increasing calcium and other bone protecting nutrients in their diet and never made the connection with my own needs 🤦🏻‍♀️ Talk about “physician heal thyself”!!!!!!

[Nerak12 in reply to PMRpro]

Meant to add that I absolutely love Parmesan. I have a friend who lives in the hills not far from Parma and I bring back huge chunks of it every time I visit them. Along with Parma ham and porcini mushrooms of course! Goodness!! Must stop, my mouth is watering overtime just thinking about it 😀

[PMRpro Ambassador in reply to Nerak12]

Me too!!!!

[PMRpro Ambassador]

But a change down doesn't mean it is a significant deterioration - that could have happened without pred.

[Nerak12 in reply to PMRpro]

Yes, you’re absolutely right PMRPro. I need to know whether significant enough for me to go onto Bisphosphonates or similar or whether there is something else I can to do get the numbers going in the right direction. Will they improve if I can consistently get my Pred dose lower? Not that I’m relentlessly chasing that down, but if something would help me to do that I might be open to try it. I have sooo many questions!

[PMRpro Ambassador in reply to Nerak12]

No idea really - it always depends on the person. My BMD "deteriorated" over a period of 7 years but still nowhere near where I'd even discuss medication. Was your latest dexascan on the same machine? You often can't compare subsequent readings directly - just are you in the right realms.

[Nerak12 in reply to PMRpro]

I think the machines were the same. The radiographer asked me that question yesterday and I was aware there can be variation. Unfortunately the report from the first one didn’t say what machine was used and Pred brain meant I couldn’t remember 🤦🏻‍♀️ Hopefully the private radiologist’s report will have that info on it. If not I will make some phone calls.

[Nerak12 in reply to PMRpro]

Do you know if there is any reputable data comparing the bone density of say 100 people over 60 who have not been on steroids or taken any bone protection with 100 who have been on steroids and not taken any bone protection?? Do we categorically know that bisphosphonates improve the bone density of people on steroids, or slow the rate of bone loss?

[PMRpro Ambassador in reply to Nerak12]

I assume it increases bone density by slowing bone cell disintegration but denser bone isn't necessarily less likely to fracture - the majority of fractures happen in patients with normal bone density. And the point at which you go from osteopenia to osteoporosis is said to be purely arbitrary, they plucked a number out of the air.

patient.info/bones-joints-m....

The Matteson and co paper says there were no excess cases of any adverse effects except cataracts in a pred cohort

practicalpainmanagement.com...

and it is said that 40% of patients on long term pred develop osteoporosis. Whereas 50% of the US population have osteoporosis ... Don't know if that is true

[Nerak12 in reply to PMRpro]

Thank you for this info. I will try to put together a cogent set of notes for our discussion with Rheum on Monday. 👍🏼🙏🏻

[jinasc]

Before your appointment, go to the Royal National Osteoporosis website and read up, especially on the drugs, not that I think you need any. As PMRpro has said your bones do deteriorate with age.

I had 5 years of pred with GCA and bones never moved, Dexa scan every two years. Now 11 years in remission and osteo came along well after I stopped the pred. But then I was a lot older.

[Nerak12 in reply to jinasc]

Thank you. We will be info trawling over the weekend, so that’s a good pointer.

[Rache]

‘Marginally’ doesn’t sound too bad. You'll be well informed to make a decision when you’re given the exact numbers. Let us know how you get on x

[Nerak12 in reply to Rache]

👍🏼 Will do.

[Caloo650]

Oh dear. I also fear a further negative result as I already have osteoporosis. Calcium supplements upset my stomach so I am eating all the right things and walking for an hour daily. The problem is only on pred for 2 months and I was doing all this before PMR/GCA diagnosis to avoid osteo but it didn't work. I imagine my spine is going to crumble further now. I try to just be happy I'm alive. I feel your disappointment

[Nerak12 in reply to Caloo650]

Oh poor you Caloo. Calcium supplements can upset some people’s tums. Not wishing to sound like I’m trying to teach Grandma to suck eggs, have you tried different calcium preparations? Some people find calcium citrate better than the usually prescribed calcium carbonate or splitting the doses across the day helps. Until around the time I developed PMR (/.5 years ago) I was a nurse and walked upwards of 5 miles every working day, rode horses, gardened and walked a border collie every day. Since having PMR, I still walk the now 2 dogs at least once or twice a day aiming for 10,000 steps a day and am as active as I can be. I Eat all the right foods and take supplements and I haven’t been able to improve my DEXA result. It’s either the prednisolone and/or my genes, hormones or something else. It’s a mystery! Not sure I want to take the dreaded bisphosphonates, but there is really so little good research out there it’s very hard to know what to do for the best! I hope you are ok and your spine stays intact. X

[PMRpro Ambassador in reply to Nerak12]

But not IMPROVING still means it hasn't got worse ...

[Caloo650]

Thank you I will try a different form of calcium and let you know how I go

[Caloo650]

Been to see the rheumy who advises calcium from food is best. I'm trying to have 1200 mg a day. Lucky I can tolerate dairy. I have another year before a DEXA scan