My daughter has been diagnosed with this.: theros.org... - NRAS

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My daughter has been diagnosed with this.

sylvi profile image
15 Replies

theros.org.uk/information-a...

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sylvi profile image
sylvi
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15 Replies
helixhelix profile image
helixhelix

Osteopenia? So just low bone density right now, not full on osteoporosis?

Hope so, as if she follows the advice that may not develop any further. Fingers crossed.🤞🏼

sylvi profile image
sylvi in reply tohelixhelix

It has been caught earlier enough so she can adjust her diet and I believe when she sees he gp in the new year she will be given something to help her as well(I think it might be Adcal). xxx

Pippy25 profile image
Pippy25 in reply tosylvi

Hope things work out and your daughter gets the treatment she needs, sending my best wishes sylvi.

medway-lady profile image
medway-lady in reply tosylvi

I take Ad cal D3 make sure not with thyroxine if she takes that as really upsets tummy. Get the chewy one much easier on the tum and tastes ok. I got it as kidneys affect bone density.

AngelWings profile image
AngelWings

Hi Sylvi. Sorry to hear about your daughter and glad it’s been caught early. Osteopenia tends to effect us RA sufferers. Wishing you both well and pain free for the holidays. Happy Christmas 🎄 xx

Ruth12345 profile image
Ruth12345

Glad it's been identified early. They know how to deal with this according to my sister who has it.

I wish her all the best. X

Fruitandnutcase profile image
Fruitandnutcase

Horrid news for your poor daughter. Good that she’s been caught early on and before they discover it when she brakes a wrist or something.

A friend’s son who is in his thirties has been found to have osteopenia, not sure what he’s taking but I know exercise is involved

Think there’s lots she can do to help. I’ve got a friend who gets regular scans to check her bones - she is having a treatment for cancer that can wreck her bones.

Friends last scan showed that her efforts are paying off - she’s exercising too, not sure what if any meds they are taking as well as their exercise routines. So there’s hope for your daughter once she gets going.

Sorry to hear this Sylvi. I have full blown Osteoporosis with spinal fractures, so I'm glad your daughter is only at the osteopenia stage. I have Adcal D3 but I also have bisphonates to strengthen my bones.That same website advises on nutrition and exercise.

theros.org.uk/information-a...

sylvi profile image
sylvi in reply to

I think in the new year she is seeing the doctor and then the scan results will be with the dr and then they can formulate a plan to help her prevent any further damage.

You really are suffering and I don't wish it on my dr as I suffer enough without her having to go through it as well.xxxx

in reply tosylvi

I know you do Sylvi. 😟😭

Amy_Lee profile image
Amy_Lee

Dear Sylvi, I was diagnosed the the same 3 years ago but it was only on the left pelvis. Then my rheumy prescribed me with calcium and V-D since. No further test for me after the bone density scan as my rheumy thinks that it is not necessary.

sylvi profile image
sylvi in reply toAmy_Lee

I think that is what will happen to her Amy. I think she is worried she will end up like the state I am in, but if she has any symptoms you can bet I will be on at here to see a doctor.xxxx

lKeith profile image
lKeith

sylvi

I've had the full works for years and while getting a bit bent and a bit of cramp from time to time, I've lived through it even having lost height. There are treatments out there that help to strengthen the bone structure which I am sure her GO will be aware of. Currently I have an infusion every 8 weeks of a drug called Zometa that seems to keep it under control.

Good luck to her in getting the right treatment.

Have a happy Christmas.

IKeith

sylvi profile image
sylvi in reply tolKeith

Thank you. xxx

nomoreheels profile image
nomoreheels

There's hope to keep it at osteopenia Sylvi. I've been borderline osteopenia/osteoporotic for years, more or less from diagnosis back in 2008. I have a DEXA scan biennially & my FRAX score (calculation for risk of bone fracture) last year showed improvement on my previous one. The only intervention prescription-wise is Adcal-D3 1500mg/400iu which I took once daily then twice daily but now back to once daily. The only other thing I’ve done to improve my score is include more dairy in my diet. This goes back to my first Consultant's thinking, here in the UK I was told to reduce it so I did, I had a poorer FRAX score so discussed it with my Rheumy & she suggested I go back to having more dairy. She was a bit concerned about my cholesterol but as I have annual heart checks she was ok with it. I'm still borderline but not had any fractures, never have.

I'm sure your daughter will find her own way, she just needs to try to keep it off the osteoporotic score.

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