Dexa scan

[MrsPractical]

I thought I would share my experience. I have just been for the above, having questioned the need for me to be taking Alendronic acid. I was told by my GP that I “might as well” take it when started on Steroids. I hated the ritual of having to get up earlier on the day I had to take it and then when I read various things on here I really felt I didn’t need it. I’ve had to wait 4 months since I asked to be referred.

Following the scan, the operator explained to me that she hadn’t seen anything of concern but they would need to do calculations therefore if any concern I would hear from doctor in about two months, if not much concern or no concern could be 5 months! Good job I had already decided to stop taking it. I’m only on 2mg per day Pred.

I really don’t think I am a likely candidate for osteoporosis so fortunately I am not worried.

This is in the uk, Nottingham.

All the best everyone.

[PMRpro Ambassador]

Trouble is - you can't see through bones and a lot of people have been surprised by an osteoporosis diagnosis. You have been at risk because of being on pred. That said - I took 4 AA tablets before agreeing with a different doctor I'd wait for my dexascan results which were so good at baseline I didn't need it - and never have done in the 13 years since!

[Longtimer in reply to PMRpro]

I tried several years to take prescribed bone protectors, but they gave me severe stomach pain, Endoscopy showed “sludge” in my stomach.

Have Osteoporosis so had infusion last November. Having been told I now have Fibromyalgia was prescribed Duloxitine, had GP phone appointment yesterday she was surprised I am not also on any calcium, I had to remind her of the problems it gave me. Took first Duloxitine yesterday evening, up all night with Diarrhoea, damn sludge I would think. Have had mouth/ throat ulcers for weeks, feel like I am going to choke when I eat……I envy people that can take anything prescribed for them! Sorry to moan on but I like answers, my GP rang at 4.30 couldn’t wait to get rid of me!

[PMRpro Ambassador in reply to Longtimer]

If it's not one thing ... What a nightmare!

[Longtimer in reply to PMRpro]

Absolutely!

[Karenjaninaz in reply to PMRpro]

All those years of skiing really paid off!

[Blearyeyed]

Good job , Mrs P !Like Pro says , you do need the scan as nobody can be sure of their bone health but it sounds like it's good news so far and you can sling out the AA.

Of course , none of us are Mystic Meg , not even Mystic Meg now, and can't predict what could happen to our bones in the future , so now you know you are on a good footing it is still worth using Preventative Self Care, with a nutrient rich diet , hydration and weight bearing exercise within your comfort zone like walking and low impact Pilates or tai chi to help reduce the risks of oestoporosis as the years go by.

Well done on being proactive about this and posting about your experience, it will give confidence to others to do the same. Take care , Bee

[MrsPractical in reply to Blearyeyed]

Thanks for your comment.

[Sl0th]

I was the same. GP gave me Alendronic, I wasn't happy and had Dexa Scan ordered by Rheumatologist. All results normal for age, no need for Alendronic Acid. Too easy to prescribe without proper investigation.

[Bridge31]

I have my scan today only 4 weeks since referral . I requested my first one 3 years ago for the same reasons i.e. being pushed to take AA. Even after the first scan results were good for my age ( I’ve been using oestrogen only HRT patches for 35 years ) my arrogant Rheumy still wanted me to take it. I never did and I didn’t see him again so it will be interesting to see what changes have occurred.

[Mota1]

Hi

It will be interesting to see what your results are. I had to fight long and hard for a dexa scan. By the time I got one I had reduced from 40 mg (GCA) to 2mg all the time on alendronic acid. I am now off prednisolone. My results were as follows:

Hip minus 0.6

Femoral neck minus 0.6

Lumbar spine plus 1.9

Bone densimetry normal

The scan operator looked at my diet and medication and told me I could be taking too much vitamin D. I think she was surprised at the 1.9 score. Rheumatology said everything okay just keep taking calcium and vitamin D!

I am still a little concerned at the lumbar spine result as I have back problems with scoliosis and following a fall whilst running at pace.

I am a 79 year old male; suffered from PMR and then GCA. No problems reducing the steroids.

[PMRpro Ambassador in reply to Mota1]

The scoliosis probably causes a false reading,

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

It can vary the result by up to 1 SD according to that so each vertebra should be considered individually. The presence of any osteoarthritis can also lead to high density readings.

[Mota1 in reply to PMRpro]

Thank you so much for finding this research. After reading this, there is little doubt in my mind that my scoliosis is a contributing factor in my lumbar spine score although my running injuries might be contributing to the development of arthritis. Thank you again.

[Karenjaninaz in reply to Mota1]

I have operated, instrumented scoliosis correction with much residual.

My dexa scans are only of the hip and wrist.

[Suffererc]

I have just been told by a Rheumatologist that there is no need for me to have a Dexa scan because I am 73. I think that is discriminatory. Shall speak to my GP and see if I can get one thru her 😊

[PMRpro Ambassador in reply to Suffererc]

They claim there is no need since they assume that everyone over 65 has osteoporosis. Something that is actually far from the truth these days. I don't, even after 13 years of pred and no bisphosphonates!

[piglette in reply to Suffererc]

It is recommended that people at average risk get a DEXA scan starting at 65 (women) and 70 (men). A friend of mine was refused a scan in her 50s, she was told she could not have one until she was 65 or over. The trouble is in UK that there seems to be a dearth of Dexa scanners. We fund raised for ours. When we actually got it installed it was the person in charge of fundraising, whom I mentioned above, who was turned down for a scan. She raised merry hell! She had even got Camilla, now the Queen, to open the facility.

[Rachmaninov2 in reply to Suffererc]

I had a DEXA scan recently, which was organised by my rheumatologist. I am 74 and have osteopenia, RD and PMR.

[Bayleaf1]

I wish I was as fortunate. I was really reluctant to take it before getting results of a DEXA scan but my doctor wouldn’t refer me until I had been taking the steroids for three months. I then waited a month before finding out that there is a five and a half waiting list in my area so promptly arranged to have a private one. Results came back as -5 in lumbar spine which knocked me for six also compression in one of the vertebrae indicating a previous fracture. So I’m reluctantly taking the AA, calcium and vitD. After speaking to a ROS nurse she did put my mind and rest by saying the length of time that I had been taking the steroids would have had little or no effect on the current condition of my bone density.

[PMRpro Ambassador in reply to Bayleaf1]

Silly man - it needs to be done in the first few months if possible for a baseline so you don't wait to get in the queue ...

[Morant]

hello, I was started on Alendroic acid in 2018 alongside calci d. I didn’t enjoy having to get up earlier to take it but as I had ready broken my ankles three times I thought I would persevere. 2 months later, after a stay in hospital, after breaking hip, arm and shoulder my orthaepaedic surgeon stated he could not see any benefit to my taking a.d. so I stopped. I saw my rheumatologist 6 months later and he was most annoyed that I had stopped and suggested I start again straight a way. He stated that a.d. aids efficient absorption of the calcium. I am now on a.d. and have had no more broken bones.

[JudithWarrior]

it makes me so angry that doctors are sloppy like this and say you might as well take alendronic acid without getting a dexa scan first. My first ever rheumy appointment I was to.d exactly the same but I’d seen the damage AA had done to my mums oesophagus and stomach and said why did I need this without having a dexa scan first and couldn’t I leave it until further down the line? His response was, “very sensible decision!” What??? They just prescribe without thinking it through like some willy nilly decision. It makes my blood boil. 7.5 yrs later I’ve still had no AA. I changed rheumatologist and his view is that at this stage I don’t need it!

And as and when and if I do need it I will ask for an infusion. My mum has suffered horribly for years and eating is awful for her. I read a lot about AA in a book called Your Bones which has alerted me to some of the risks of this drug. She has been on long term steroids too.

[MrsPractical in reply to JudithWarrior]

Hi I wish I had known more about Alendronic acid before I was put on them. I did ask several times if I really needed them but was told that as long as you are on steroids you will need to take them. Fortunately it was this sit that alerted me to the problems it can cause. Unfortunately I took them for a year before deciding for myself to stop them.

[piglette in reply to MrsPractical]

What were your readings like?

[MrsPractical in reply to piglette]

I don’t get the results for a long time yet unless anything severe is found.

[piglette in reply to MrsPractical]

I always ask for mine and file them. I never get offered them.

[MrsPractical in reply to piglette]

I have every intention of getting results thanks. I have to wait until results sent to gp to get them. Seems they have lots of calculations to do first that’s why it takes so long!

[PMRpro Ambassador in reply to MrsPractical]

Rubbish - it is called a computer! My first dexascan I was handed the results in a couple of days (to be fair, it was my husband's department) and none of the scans I have had here in Italy have taken more than 3 weeks for the letter to arrive. I have seen the results on the computer screen at the time, it is only the reporting that takes time. Don't let them try to bamboozle you with noddy science.

[piglette in reply to PMRpro]

Perhaps the computer had a headache!

[MrsPractical in reply to piglette]

😂

[PMRpro Ambassador in reply to piglette]

[MrsPractical]

my comment has been that they must have to use an abacus and pen and paper!!!

[PMRpro Ambassador in reply to MrsPractical]

Sounds more like a slate and chalk!