osteoporosis risk @ 5.9%.- good or bad?

[ignatz]

I have just had this back from my Rheumatologist and wonder what it might mean? Anyone?

"The L1-L4 T-score is -2.0 and BMD is 0.871 g/cm2. The left femoral neck T-score is -1.0 and BMD is 0.797 g/cm2. The 10 year risk of major osteoporotic fracture calculated from femoral neck bone density and risk factors for fracture is 5.9%. The patient has low bone density as defined by the T-score at the lumbar spine site. The fracture risk is relatively low for age and pharmaceutical intervention for bone protection is not recommend."

but....

"you are at risk of osteoporosis and diabetes- stress causes the body to ache- so please contact your gp to arrange support"

I have upped my dose to 20mg/day to control endless aching shoulders and brain fog when down at 9mg. Now coming down again passing 17mg. Life has been (and may continue to be) very stressful.

[PMRpro Ambassador]

Is this your first dexascan? How long have you been on pred?

I have similar readings though my spinal score is a bit better and I did expect the local osteoporosis expert to insist I needed bisphosphonates. In the event she said how good it was, she had never seen such good results from someone on longterm pred and no mention of anything besides calcium and vit D was made! And that is basically what they have said about yours.

You DO need to pay attention to vit D and dietary calcium intake - and all the non-medical interventions that reduce the risk of falls like removing trip hazards, good lighting on stairs and dark corners etc etc.

The comment about seeing your GP is referring to the risk factors associated with being on pred. Have you any signs of diabetes (do they check your Hba1c level?) I assume you mentioned the symptoms of PMR? PMR ain't stress ...

[ignatz in reply to PMRpro]

I suspect it is my first dexascan. On Pred for 3 years.

Good to read that a similar score is good.

Taking VitaminD but not doing anything special about dietary calcium. Any guidance? nhs.uk/conditions/vitamins-... suggests "Adults aged 19 to 64 need 700mg of calcium a day. You should be able to get all the calcium you need from your daily diet."

Must I stop riding a motorcycle? Slowly and avoiding trips and spills at all times!!!

I am to refer myself to my GP with a recommendation for counselling and CBT to deal with stress!

Is Hba1c this? Haemoglobin A1c (mmol/mol) 13/10/2020 35 20 - 42 mmol/mol Final. I have never been told that diabetes is a side effect of PMR or Prednisolone until today. All the comments are from 'my' Rheumatologist who is fully aware that i suffer from PMR. I suspect she thinks I am psychosomatically swinging-the-lead as I seem to be unable to shake off PMR aches and brain fog. Hard to tell. As stiff shoulders are a common physical symptom of stress; however stiff legs and brain fog/ exhaustion are not stress symptoms I have had before.

...and many thanks for your interest.

[PMRpro Ambassador in reply to ignatz]

People make a mess of bones on m'bikes with or without osteoporosis!!

People on pred need more calcium as pred makes you lose more through the kidneys - think 1200mg is better. Lots of cheese and some milk in tea seems to do me.

"I suspect she thinks I am psychosomatically swinging-the-lead as I seem to be unable to shake off PMR aches and brain fog" - just don't introduce her to me or I'll tell her about the duration and effects of the autoimmune disorder that causes the symptoms we call PMR.

I imagine there mignt be a considerable wait a) to see a GP and b} for CBT for stress at present!

Pred makes the liver release random spikes of glucose from the muscle stores of glycogen. If you also eat a fair bit of carbs, especially simple carbs and added sugar, it all adds up and can take the Hba1c to the realms of diabetes as it is a reflection of the average BS levels over the previous 3 months.

diabetes.org.uk/guide-to-di...

A reading of 42 is fine, lower is better and you would manage that easily with a few dietary tweaks.

You probably didn't need to go to 20mg - can you remember where the aches reappeared? 9mg was obviously a bit low.

[ignatz in reply to PMRpro]

Many thanks!

I am rather surprised about the counselling/CBT proposal as I regard myself as ridiculously cheerful - although I hear rumours that this may be due to overdosing on steroids.

I avoid sugar- and can no longer taste anything sweet since last year. Lots of carbs- bread, pasta, often potatoes. 35 should be OK?

I definitely needed 20mg- I spent about 2 weeks feeling fairly grim on 15mg aching and exhausted. I see that I was fine on 10mg back in early April 2020, and started getting some aches and fog at 9.5mg in mid April, rough on 9mg at end of April. (Finally my digital log becomes useful!).

...just realised that I felt ridiculously cheerful back in April too and have done for the last few years- so does not appear to be related to high dose Pred.

[Heron82 in reply to ignatz]

Don't forget the pred causes brain fog, mine has improved now that I'm on 15 mg pd and hoping for further improvement as I continue to reduce. Seems like quite a big leap to go up from 9 to 20 mg. Others more experienced on this forum recommend a 5 mg increase. Has the increase alleviated the PMR symptoms? Hope things improve for you soon. I wouldn't give up the motorbike if it gives you joy. Stay safe.

Heron

[ignatz in reply to Heron82]

"Pred causes brain fog"? I thought it was PMR that caused the brain fog and Pred controls it.

I actually went from 9 to 15 for around 2 weeks which did not seem to control aches or fogs; then on to 20mg for a few days which definitely worked. 'My' rheumatologist wants me to come back down in 2.5mg steps each week back to 10.....which may be my minimum control dose.

Rather worried that 'my' rheumatologist has become jumpy about osteoporosis and diabetes. I note that I have hit the 10g cumulative dose which may be a boundary condition for expert panic?

I may have to go with the short but happy life after all.

[Heron82 in reply to ignatz]

Mainly it is the steroids, why one goes gaga on high doses.

[DorsetLady PMRGCAuk volunteer in reply to ignatz]

I hit the 20g cumulative dose during my GCA journey - now in remission, and despite being on v. high doses didn’t go gaga Heron82 !

But sure family would say I was gaga long before steroids 😳

[PMRpro Ambassador in reply to ignatz]

I had brain fog with PMR that was far worse than anything I ever experienced with pred and after some time on pred it had improved tremendously. Everyone is different.

[PMRpro Ambassador in reply to ignatz]

Anything below 42 will be OK - and if you are eating lots of that sort of carbs I'm sure it won;t take a lot to get it much closer to 35 which is a very good reading for anyone!

[123-go in reply to PMRpro]

PMRpro...you could hire yourself out as an advocate! I pity any dismissive 'professional' who comes across you! 👏👏👏

[ignatz in reply to 123-go]

Seconded. PMRPro seems to be an excellent advocate! Can we afford her?

[123-go in reply to ignatz]

She may give us mates rates.

I would like to add my respect and thanks to many others here who pass on information of their own experiences and the knowledge they've gained. Such a benefit to us.

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

No chance! She’s Scottish 😳 🤣😂🤣

[123-go in reply to DorsetLady]

Thanks for the tip. I draw the line at grovelling.

[PMRpro Ambassador in reply to DorsetLady]

Would I not have to be in quarantine for 2 weeks?

[ignatz in reply to DorsetLady]

Ditto here (re Scottishness)

[DorsetLady PMRGCAuk volunteer in reply to ignatz]

Nothing personal...just saying!🤦‍♀️

I used to work with a Yorkshireman, and he used to say "what do you call a Scotsman?... a generous Yorkshireman."

[HeronNS]

I was mistakenly told I had osteoporosis after my first DXA scan. In fact my results were not too far off yours, possibly a little worse. They did, however, recommend drugs but I had done a lot of reading by then and said no. Later I got my actual t-scores. I improved my femoral neck t-score from -2 to -1.6 in one year by doing what I describe in

healthunlocked.com/pmrgcauk...

My blood sugar got high, near but not diabetes. I gave up all "white carbs" and was actually quite shocked at how much wheat I'd been consuming. Blood sugar came down but was not completely normal until my pred dose was probably around 5 mg.

I think exercise is just as important for bone density as nutrition. Even regular walking.

[ignatz in reply to HeronNS]

Many thanks, Heron. I have started on Calcium with D3 as I may not be getting enough dietary calcium as I don't put milk in tea or coffee and have reduced cheese intake to avoid cholesterol issues.

Hopefully once the dentists have finished with me, I can get back on the Alendronic Acid which should control the osteoporosis issue.

[PMRpro Ambassador in reply to ignatz]

But you still need calcium and vit D when taking AA or it doesn't work!