Dexascan results

[Purplegloss]

Today I received my dexascan results, and they are not looking good-significant worsening bone health!

My last scan was in 2021, and I have just compared the results. 2021 Lumbar spine -3.2 Hips -2.0 and -2.1.

2024; Lumbar spine T score -4.1 Osteoporotic L1-L4 bone mineral density 0.687 per sq.cm.

Hips T score -2.8 and -2.5 Osteoporotic bone mineral density in the left neck 0.65 per sq.cm. and 0.705 overall On the right side bone mineral density focally in the neck is 0.658 per sq. cm. overall 0.686. T score -2.7 and -2.6 significant deterioration. Severely osteoporotic in the spine, mildly osteoporotic in the hips.

I have been on pred since October 2017 so just over six years now. Started on 20mg currently on 4mg going down to 3.5 mg using slow method. I took AA for 2/3 years in the beginning and then changed to vitamin D, K2 drinking whole milk, yoghurt etc, now my GP wants me to make an appointment to discuss Prolia injections-thoughts please before I make an appointment.

The other item I was originally going to put on here before I got my GP's text this morning with my results, is wondering, now that I am on quite a low dose of pred, I am having to get up in the night at least four times to spend a penny which is not doing a lot for my sleeping time. Is this because my adrenal glands have probably kicked in now or just that I am getting older?

[PMRpro Ambassador]

theros.org.uk/

ROS has an excellent helpline and the staff there will guide you through your options. You have very low bone density and you are almost certainly at increased risk of spinal fractures.

Prolia has a very good record of improving bone density - there is some controversy about its use because either you need to stay on it longterm or you have to switch to oral bisphosphonates to maintain the improved bone density achieved with Prolia - if you stop Prolia without doing that there is a problem with rebound loss of bone density which often results in spinal fractures.

Can't really help with the nocturia problem I'm afraid.

[Purplegloss in reply to PMRpro]

Thanks for your quick reply Pro. Where do they inject Prolia? In your arm? Trouble is at the moment, I feel the best I have done for some time, and nothing hurts anywhere, not even first thing in the morning, never broken any bones either. I though if anything it would say osteoporosis, not osteoporotic, not sure what the difference is.

[PMRpro Ambassador in reply to Purplegloss]

In your tummy, it is just a subcutaneous injection, tiny needle. Once every 6 months.

Osteoporitic is just the adjective for the state of the bones which have osteoporosis.

[Purplegloss in reply to PMRpro]

Just had a look at the dexascan report again, and it says using the FRAX system over a 10 year period - I would be 90 by then!! I have a 27% risk of a Lumbar fracture and 13% risk of a hip fracture, so 73% and 87% no risk if you turn it on its head. I am very tempted to just drink more whole milk, and walk more often instead of putting Prolia in my system. Hopefully gradually reduce pred as well. Would HRT be another option?

[PMRpro Ambassador in reply to Purplegloss]

I think that diet and HRT are a bit too late hopes - excellent for prevention but you do already have very low t-scores, especially in the lumbar spine. I really do think you have to take this seriously and speak to the ROS helpline. It may never happen - it is insurance to reduce the risk. But compression fractures of the spine can be very painful and when my husband had a sinlge fracture he was next to immobile for a few months with terrific pain.

[Sharitone in reply to Purplegloss]

I get my Prolia in the arm, every 6 months. No side effects that I'm aware of.

[powerwalk in reply to PMRpro]

Pro, Does it have to be oral or can you go on infusions after Prolia if you stop?? Thanks. I know!!! I still havent sorted this yet, dentist next week and thinking more about doing infusions.

[PMRpro Ambassador in reply to powerwalk]

I assume so. But they will use Prolia for at least 3 years I imagine - this won't be an overnight decision for that and by then, their options may have changed.

[powerwalk in reply to PMRpro]

True. Tks.

[agingfeminist]

I had my last couple of prolia injections in my upper arm. No arm ache afterwards. You can do it yourself in your tummy...there is a great step by step instruction leaflet in the prolia box. I went to a nurse and combined it with a visit to my doctor..same building and on my doorstep.

[5lupins]

Have you checked diabetic blood levels for your nightly penny spending? J

[Purplegloss]

Yes, I had it checked in January, and it is fine. Not sure what is going on, maybe it will settle down again at some point.

[PMRpro Ambassador in reply to Purplegloss]

Could be a UTI - that would be my first thought.

[nissemor]

Hi Purplegloss,

I have been having twice yearly Prolia injections since about mid2018. Then for two Covid years I was in New Zealand and had to make do with AA as Prolia was not available to me. I’m back on it now with no side effects . It’s given subcutaneously on my tummy. Osteoporosis seems to run in my family.

I also try to make sure to eat plenty of green vegetables seeds and nuts which help with calcium intake., too much dairy doesn’t agree with me.

[Purplegloss in reply to nissemor]

After all this time on Prolia injections, have your dexascan results improved at all? Not sure what results can be expected whether results don't get any worse, improve, or worse case scenario carry on getting worse.

[nissemor]

I must admit that I haven’t had a Dexa scan for years, , I forget to ask , but as I take other meds as well which affect my hormones , per haps I should request one. No further fractures, though.. fingers crossed.

[daisylazy]

Hi Purple glass after having Prolia injections for 9 years my results went from Osteoporosis to osteopenia. Just had a dexa scan. As Pro said you can't come off it without taking something else and as I have a stricture in my oesophagus i have stayed on Prolia. No problem with having it just a simple injection. Hope that helps. Good luck with whatever you decide.

[Purplegloss in reply to daisylazy]

That's interesting, and the first person I have heard of with actual positive dexa scan results after taking Prolia. Thanks.

[PMRpro Ambassador in reply to Purplegloss]

OK, it is from the manufacturer but they did publish results of a study that showed considerable improvement in bine density:

prolia.com/proven-results/p....

This also a good narrative - also funded by the company but a necessary part of monitoring long term use of a drug post-launch:

ncbi.nlm.nih.gov/pmc/articl...

[Purplegloss in reply to PMRpro]

Thanks for the info. Pro. The reason I mentioned HRT the other day was due to an operation I had to have about 30 + years ago when I was diagnosed with endometriosis, and acutely tilted womb resulting in me having a hysterectomy, and because everything was stuck to my bowel and ovary, I had to have one ovary removed as well. I was put on HRT for 10 years at the time, but now wonder if this is where my bone loss may have started rather than with the Pred. I have read that HRT can help improve bone loss, so just wondering from my non-medical background point of view.

[PMRpro Ambassador in reply to Purplegloss]

I was on HRT for about 13 years - shortly after stopping it my PMR appeared!! But I have always credited it for my relatively good bone density as that is the usual effect. But since being on pred my bone density has been falling slowly although I am still in the osteopeneic range. It think it is more likely it is the 20 years post HRT that is "to blame" for your low BMD as it has fallen noticeably in the last few years. You can only really tell if you had dexas done after the hysterectomy and then regularly over the years.

[Purplegloss in reply to PMRpro]

Thanks Pro. I think I am probably going to go for the Prolia, but the earliest appointment with my GP isn't likely to happen until April sometime!! No appointments.