More about Dexascan / AA / Adcal

[Hopingsail]

I opened up intending to post about my latest AA Prescription dilemma - and still would like some advice. I wasn't sure whether to add to Blackcat1M's post - but it seemed a bit rude to invade her space!

Anyhow, my GP prescribed me AA and Adcal -D3 early May on basis I had been on Pred since PMR arrived in March 2021. I plucked up courage to say I would rather not take (esp) AA unless I knew it was necessary. (I'm a 76 yr male - no broken bones ever - active, good diet w plenty of milk and dairy and all the right stuff too.) Somewhat grumpily he referred me for a Dexascan which followed a few weeks later - I was told the results would take some weeks as they were still on catch-up. I forgot about it until 10 days ago, there having been no contact from surgery as they had lost the results! I had to chase for the results to be resent to Surgery, and then had a phonecall from GP who told me I had osteopenia.

T-scores: -1.5.spine, -2.2 hip, -1.5 something else maybe neck? ( I couldn't catch what he said). He didn't give me a Z score.

He is keen for me to take AA (though said he would prescribe new alternative) and the Ad-cal.

My hesitation is that I really don't want my system "upset" by a strong drug such as AA unless absolutely necessary. I've had quite a time of getting down to 6.6 mg Week 3 on DL's Plan. (Trauma of my wife dying in November / aches and twinges since 7mg / a DVT in Feb / prostate count up and down and still being monitored by Hospital with prospect of invasive biopsy hanging over me following a MRI which revealed a "small lesion" which might or might not be of concern. I also take med for hypertension - well controlled - and a statin.)

I also take a Cod Liver Oil capsule for vitamins A & D which the Doc knows about. The Oil capsule bottle warns against exceeding the daily dose - but AD-Cal would seem to do just that? )

Opinions valued - as ever!

[DorsetLady PMRGCAuk volunteer]

DEXA info from ROS -

Bone Density Test Results

A T-score of -1.0 or above is normal bone density. Examples are 0.9, 0 and -0.9.

A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. ...

A T-score of -2.5 or below is a diagnosis of osteoporosis. ...

The lower a person's T-score, the lower the bone density.

so looking at your figures you probably have osteopenia -but that doesn’t mean it will definitely become osteoporosis-have a look in FAQ -under Bone Health for more info, and/or ROS

Link to ROS site -

theros.org.uk/#

PS -I did take AA for 4 years when I had GCA - caused no issues for me -and family/personal history showed I was in the susceptible group. Had DEXA scan post AA/Pred/GCA which was fine - but recommended to continue Adcal-D3 -which happy to do.

But would say if you need it, then take it, but if you don’t, then don’t be pressured into accepting.

How are you at the moment-last few days have probably resurrected lots of memories….

[Hopingsail in reply to DorsetLady]

Thanks DL - very helpful as ever! The ROS site makes interesting reading. And yes, the last few days I have found very emotional as you surmise...

[DorsetLady PMRGCAuk volunteer in reply to Hopingsail]

Yes I’m sure it has -as I said in another post a few days ago, no matter when a similar thing happened to us, the memories/feelings come rushing back.

Take care.

[Kendrew]

Hi Hopingsail,

I thought it might be of help to describe my experience as it links to what you were saying.

I too refused to be automatically prescribed AA (& Calci-D) without evidence I needed them. Unfortunately my DEXA scan showed that there was indeed already some evidence of osteoporosis so I made the decision to take both.

Two years later I stopped Calci-D, increased my calcium in my diet but continued to take a Vit.D3 supplement. My recent blood tests showed both my calcium and vit.d levels were well within normal parameters.

Three years on and with a new rheumatologist in the mix, I was able to renegotiate the AA situation which also resulted in the cessation of that medication too.

The most recent DEXA scan had showed that after 3yrs my bone density had improved and I was now back in the osteopenic range.

The rheumatologist also undertook something called a FRAX test. (I'll leave it for you to 'Google' for further info) Its very simply an online test that calculates your risk of a fracture. My result showed I had a moderate to low risk so she agreed to take me off AA.

I'm working very hard at trying to maintain good bone health with some specific strategies in place to support this and only time will tell how successful this will be.

I hope this brings some hope and belief that there isn't always necessarily a need to take AA but if there is then it most definitely doesn't need to always be long term, and it should probably only be prescribed when there is evidence suggesting an obvious requirement.

I should also say that whilst still on steroids my bone health will be carefully monitored.

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

Hopingsail Kendrew comments re FRAX - it's probably in the link I sent - but also here -

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

[Kendrew in reply to DorsetLady]

That's the one. Thankyou.

[PMRpro Ambassador]

The hip reports are the total hip and neck of femur - but it isn't clear without the written report. The -2.2 is a bit near to osteoporosis but I'm sure that HeronNS would say it could be improved by other methods.

The amount of vit D in cod liver oil is surprisingly low - 1 teaspoon has only 400 IU/10mcg. Much the same as the AdCal supplements have. My physiotherapist was telling me the other day about a lecture she went to with a neurophysiologist who was recommending 15,000 IU per day! They questioned him - he was insistent.

There is no vit A in AdCal - just calcium and vit D. However - there is a lot of cholesterol in cod liver oil - almost double the RDA. You might like to reconsider it since you are considered to need a statin!

[Hopingsail in reply to PMRpro]

More helpful info - thanks! I think I'll lay off the Cod Liver Oil capsules and take the AdCal! (I sometimes wish I had paid more attention in Biology lessons at school.... but I'm pretty good on tides and passage planning!

[PMRpro Ambassador in reply to Hopingsail]

I'll pass on that!!!! You'd have to tie me down to get CLO down me in any form!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Me too! Just the thought makes me shudder…

[Hidden in reply to PMRpro]

I had a funny memory about CLO. When I was very young, Mama gave us a tsp of it every day. I loved the taste and one day I got into it and drank a big swig. She was aghast. Obviously caused no harm. 😋

[PMRpro Ambassador in reply to Hidden]

Oh bleugh!!!!!!!

[piglette]

My GP has been pushing me to take AA since 2016. I have not actually seen him face to face in that time but every time we talk in the phone he brings it up. I have had Dexascans and according to them my bones are equivalent to stainless steel! If I were in the osteoporosis range I might consider AA, but not otherwise.

[Hopingsail in reply to piglette]

Bit shocked you haven't seen your GP f2f since 2016 (unless its your choice!). I haven't see mine for over 2 years and that seems to be common now - whatever happened to the patient/doctor relationship that was at the heart of general practice, and treating "the whole person" ? Steel bones sound good - but could prove tricky in airport scanner!!

[piglette in reply to Hopingsail]

I see the nurse quite regularly for blood tests.

[Tiredofpmr555]

My doctors have been pushing bisphosphonates since I was 60 because of low test scores. I lived most of the war in London and nourishment was scarce so I figure my bones never were great but reading about this drug didn't excite me so I have always refused. I am sure after three years on prednisone hasn't improved my bone health but at 87 I am still in one piece and hope it continues. Everyone has to make up their own minds about this drug .

betterbones.com/bone-drugs/...

[Hopingsail]

Absolutely!