Osteopenia - should I persuade my GP not to prescribe AA?

[katzma]

Just got my DEXA scan results back via the NHS app. and seeing my GP on Monday to discuss the osteopenia diagnosis. T scores are: AP Spine -1.7; Femoral Leg -1.5; Total Hip -1.2.

2 months on, my PMR pain and stiffness is thankfully at bay on 12.5mg of prednisolone. but I'm hating the side effects, and fearful of adding yet more medication, given that I have been blessed with excellent health prior to this. 

Finally beginning to feel human again for at least part of the day so Im determined to try anything that will help heal naturally. I’m back to walking every day and have just started using the Pilates for osteoporosis video on the UK NHS website. Also planning to mix in some yoga sessions for osteopenia which are available on YouTube.

I came across this video this morning  via a Google search :  Osteoporosis - There IS Something You Can Do. An Interview With Sara Meeks (P.T., M.S., G.C.S., K.Y.T).

Makes total sense to me, hence my question… do I really need to take the recommended  Risedronate 35mg weekly? Thankfully my GP does listen!

[DorsetLady PMRGCAuk volunteer]

Please discuss -you probably don’t need it -see this - osteopenia doesn’t necessarily progress to osteoporosis

From guidelines --

6) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis .

Individuals with high fracture risk, e.g. aged over 65 years or prior fragility fracture􏰀

Bisphosphonate with calcium and vitamin D supplementation

DEXA not required.

Other individuals􏰀

Calcium and vitamin D supplementation when starting steroid therapy.􏰀

DEXA scan recommended􏰀

A bone-sparing agent may be indicated if T-scoreis 􏰁1.5 or lower..

Individuals requiring higher initial steroid dose􏰀

Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative dose of steroids is likely) 

Depending on your circumstances, and how agreeable GP is , you probably only need VitD/calcium supplement

Some seem to pick & choose what they following from guidelines!

[PMRpro Ambassador]

Those t-scores wouldn't normally trigger use of a bisphosphonate - they are the same as mine were 13 years ago when I started pred and my GP agreed with me that that didn't need AA so I wouldn't start it unless regular dexascans showed I needed it. I've had 4 dexas, still OK and still no AA. The local osteoporosis guru who used to be n at me to take AA now just says to keep doing what I'm doing.

I think a good dose of vit D is important - I take 4000 IU a day, plenty of calcium in my diet and walk as much as I can manage which isn't that far, about a mile or so.

[katzma in reply to PMRpro]

Your similar results experience is really encouraging and hopefully will help win the case against the more meds discussion! I will also ask about increasing the calcium and vit D supplements .

Many thanks for your invaluable input to everyone's endless questions😊

[PMRpro Ambassador in reply to katzma]

Not more combined supplements though - too much calcium can be bad, I always took separate vit D.

[Poshdog in reply to PMRpro]

sInce having blood test revealing high cholesterol and recommended statins, I have stopped taking extra calcium, doubled up on vit D and refused statins. Hopefully makes some sense!

[PMRpro Ambassador in reply to Poshdog]

My cholesterol has also risen since Actemra - having had 2 bad experiences with statins my rheumy offered Ezetimibe. We'll see - it can also cause muscle aches and pains!!!!! But I doubt I would know ...

PS - why less calcium?

[Poshdog in reply to PMRpro]

Think I get enough through diet and hate taking

[katzma in reply to PMRpro]

Because of the high cholesterol risk? Mine is around 4 I think at the moment

[PMRpro Ambassador in reply to katzma]

There seems to be a lot of dispute as to whether calcium supplements raise or lower cholesterol levels! Seems to raise HDL and possibly slight decrease LDL but the studies seem a bit varied in quality.

[autumnlass]

Hello Katzma

Was interested in your DXA scan results.. I had mine about a month ago.

My results showed that my lumbar spine has a T score of -1.0: Hips have a T score of -1.1 : Left Femur -1.2 Right Femur -1.0.

I’m told I’m in the osteopaenic range still and have been taking Risendronate 35 mgms weekly with no ill effect and AdCal every evening.

Love walking and try to to 5 - 7k steps daily.

However in 1995 and 2003 had 2 fractured ankles and put on AA as was osteopaenic. Horrible! I put up with it for too long!

Good Luck with your fitness schedule. 🍀

[PMRpro Ambassador in reply to autumnlass]

hopkinsmedicine.org/health/....

A T score of -1 to +1 is considered normal bone density.

A T score of -1 to -2.5 indicates osteopenia (low bone density).

A T score of -2.5 or lower is bone density low enough to be categorized as osteoporosis.

If they are classing your results as osteopenia that requires medication I have to say I am appalled. Anything better than -1.6 is considered to only require calcium and vit D. Particularly questionable since the vast majority of fractures occur in bones with normal bone density!

[autumnlass in reply to PMRpro]

Thank you PMRpro - on reading the members katzma’s post I followed up my letter from the DEXA scan department which prompted me to write to the forum with my results.

These results were similar to the one I had taken in 2019, and my GP suggested Alendronic Acid which I refused. Prior to that in 2016 the results were better.

I reluctantly began Risendronate in April ‘21, 9 months after diagnosis in July ‘20 as my GP was a bit cross!

Nothing has changed much - no better, no worse. 🧐

[katzma in reply to autumnlass]

Hi autumn lass and thanks for your input. So sorry that you ended up with the fractures and good to hear that you are ok with Risendronate - but I still want to hold off taking it if I can. Hopefully the yoga/pilates will improve balance and I'm super careful when walking... who knows what's lurking under the lovely leaves!

[autumnlass]

Good for you! I’m sure it’ll work for you too! 🍀

My paternal family history has one of one of bony problems. Grandmother father and sister had/have kypho-scoliosis of the spine and elder sister has osteoporosis which has now affected her breathing sometimes. I’ve luckily escaped that! As you say what’s lurking under the lovely autumn leaves! 🤣🍁🍂🍃