Dexa scan : Good morning all. Advice please. I am... - PMRGCAuk

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Dexa scan

Chrissy1953 profile image
β€’47 Replies

Good morning all. Advice please. I am due to have a dexa scan at the end of March. I took AA for a couple of months but have stopped after reading adverse comments re side effects. Could anyone tell me what readings I should be looking for after scan to help me decide to restart AA. I have an agreement with my Dr that if the are not normal I will restart, but I still have misgivings .

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Chrissy1953 profile image
Chrissy1953
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47 Replies
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suzy1959 profile image
suzy1959

I have had 2 DEXA scans so far and the radiographer has let me know immediately that my numbers were good- I have no idea what the numbers actually are! I have also always seen my GP once he has the results just for confirmation. I went on AA twice after bullying from my Rheumatologists. The second time, my femur started to hurt so I stopped and the pain stopped. I am lucky that my bones seem OK so far.

Hi Chrissy

I asked my GP for a copy of my Dexa Scan report, all the numbers were on it, along side the range of 'normal' Levels; the recommendations re treatment & follow up date for next Scan.

I don't know the numbers off the top of my head, I'm afraid but I'm sure someone else will.

Best Wishes

Mrs N

Chrissy1953 profile image
Chrissy1953β€’ in reply to

Thanks Suzy1959. I will ask for mine when I go. Hopefully a good result. It's interesting that you got a follow up recommendation. Will ask at hospital about that too.

Chrissy, this might help, the numbers are lower down in the article

nhs.uk/Conditions/DEXA-scan...

Chrissy1953 profile image
Chrissy1953β€’ in reply to

Thanks MrsNails. Having the right info before my next app with Gp is important as he really wants me to take A A. I need all the correct info before I see him. Hope the sun is shining where ever you are as it is in sunny Dorset today. ;)

β€’ in reply toChrissy1953

Yes Chrissie Sunny β˜€οΈ here in North Wales too 😎

Rokerman profile image
Rokermanβ€’ in reply toChrissy1953

Hi Chrissy - am in exactly the same boat! Dexascan (requested by me, after seeing the many comments on this forum) arranged for a couple of weeks time. Your post is therefore, very timely and I will also request the results - my GP also seems keen for me to continue taking AA (have done since March last year) but did agree to review the situation after the scan.

We'll compare results?!

Zebedee44 profile image
Zebedee44β€’ in reply to

Thank you for posting this article. I have my dexa scan on Thursday this week so now have an idea what to ask for. I have declined AA on the grounds of an already unhappy digestive system.

β€’ in reply toZebedee44

I'm due my 3 year Repeat in April so I'll be interested to see what the results are!

Try & get a copy off your GP as remembering the numbers isn't that easy. I get a trip to the seaside (Llandudno) to have mine done!

Best Wishes

Mrs N

Zebedee44 profile image
Zebedee44β€’ in reply to

Aberystwyth for me, about an hour from home. Can't decide if to use my new bus pass or drive, either way it will hurt my shoulders.

β€’ in reply toZebedee44

My eldest son was at Uni in Aberystwyth, he went back there on his Stag Weekend!

Buses aren't very comfortable, are they? Let us know your results.

Mrs N x

Chrissy1953 profile image
Chrissy1953β€’ in reply toZebedee44

Bournemouth hospital for me. Parking a nightmare and over an hour on the bus. I do have a very handy husband though πŸ˜‰

Chrissy1953 profile image
Chrissy1953β€’ in reply toZebedee44

Good luck. Be interested to hear results . ☺

kezzybabes profile image
kezzybabesβ€’ in reply toZebedee44

I an going to doc next week to ask for a dexa scan as unhappy about taking AA too. How does it affect your digestive system though? I have ulcerative colitis and maybe this could be the reason I need to discontinue this medication...?

PMRpro profile image
PMRproAmbassadorβ€’ in reply tokezzybabes

You might find this thread on another forum interesting:

patient.info/forums/discuss...

There are a few patients with Crohns and ulcerative colitis on it but they don't seem to mention gut problems - more the usual bone and joint pain.

kezzybabes profile image
kezzybabesβ€’ in reply toPMRpro

Thanks for this

tgca profile image
tgcaβ€’ in reply toPMRpro

What is this mysterious AA? Not the Automobile Association I assume?!

PMRpro profile image
PMRproAmbassadorβ€’ in reply totgca

Would that it were - together with the lovely old badge!

No - alendronic acid, otherwise known as Fosamax. A bisphosphonate that the manufacturers would have you believe will banish forever little old ladies and gentlemen having hip fractures when they fall. Only it is being to show not only feet of clay - but cracks in them...

Which doesn't surprise me in the least ;-)

tgca profile image
tgcaβ€’ in reply toPMRpro

One of those Telegraph "if, buts, may, could" sort of thing eh?

PMRpro profile image
PMRproAmbassadorβ€’ in reply totgca

Very likely :-)

Chrissy1953 profile image
Chrissy1953β€’ in reply totgca

Hi tgca. It's Alendronic acid. It's given to help protect your bones from osteoporosis which CAN happen when on steroids. I along with some others have misgivings regarding the taking of these because of side effects. There is lots of info here plus asking Dr for a Dexa scan before deciding to take them which is what I am doing. A Dexa scan measures your bone density .I hope I've said it all. If not there are some on here with amazing knowledge who will make sure its correct.

PMRpro profile image
PMRproAmbassadorβ€’ in reply toChrissy1953

You know - I'd love to see the real figures! I have seen it said that about 40% of patients on pred develop loss of bone density. And that about half of the US population will develop loss of bone density at some point. Which actually suggests that pred is protective?????

Anyway - how do they tell? How many of us get a dexascan done pre-pred?

tgca profile image
tgcaβ€’ in reply toChrissy1953

Thanks Chrissy1953, the GP and rheumy failed to mention this and I'm now relieved I hadn't heard pf it! I will ask for a dexa scan later on in the year which, I suppose, will let me know whether the Adcal is doing the trick

Zebedee44 profile image
Zebedee44β€’ in reply tokezzybabes

In my own case i am still recovering from a full abdominal hysterectomy which has left my guts very disturbed. I do not wish to add dispepsia to my painful conditions.

Lilact profile image
Lilactβ€’ in reply tokezzybabes

I have uc and been given aa don't know whether to take aa due to bad stomach already

kezzybabes profile image
kezzybabesβ€’ in reply toLilact

Strangely my UC has settled since starting pred - I used to resist taking steroids when having a bad Colitis flare before. I just hated taking AA as it's such a strong drug and after all the bad press and reports I stopped it.

Lilact profile image
Lilactβ€’ in reply tokezzybabes

R u on alendronic acid I am scared to start them??

Also hve just reduced pred to 4mg

Dexa scan shows osteoporosis of spine

Don't want to go on AA

kezzybabes profile image
kezzybabesβ€’ in reply toLilact

I came off AA due to bad press. But I had a healthy dexa scan.

Lilact profile image
Lilactβ€’ in reply tokezzybabes

Did you get side effects from aa

kezzybabes profile image
kezzybabesβ€’ in reply toLilact

No - I just didn't like taking them after all the adverse press. My brother is a GP and he agreed with me

PMRpro profile image
PMRproAmbassadorβ€’ in reply toLilact

You are in the UK? Contact the National Osteoporosis Society helpline - they will talk you through the options.

nos.org.uk/

Are you SURE it is osteoporosis in your spine? Have you seen the results yourself. Some doctors exaggerate to scare their patients into taking it.

Lilact profile image
Lilactβ€’ in reply tokezzybabes

I have been on pred on anf off last 3 year hence the diagnosis of osteoporosis

Now I am on 4 mgl

In dilemma of starting aa

MayH profile image
MayH

Hi I had a dexa scan after I broke my wrist.i was given a 't score' measurement for my hips and spine. Numbers ranged from 4 to minus 5. Above minus 1 was classed as being normal...between minus 1 and minus 2.5 osteopenia and below minus 2.5 osteoporotic. Hope this is of some help

PMRpro profile image
PMRproAmbassador

It will be easier to comment once you have your results.

Marcy47 profile image
Marcy47

I had a Dexascan in Jan. Had 4 week wait for results. Dr told me results, I have lost some density but not too bad, no numbers were quoted. She advised me to go back on the AA, which I stopped taking in October after 1 yr, and have another blood test in 1 month for Calcium level which was a bit high last time. Not sure I want to go back on AA but will see what the blood test shows.

mzz70-70 profile image
mzz70-70

Hi Chrissy. I am pleased someone has written a post about Dexa scans as although I have been on Pred for over 2yrs and AA for the same neither my GP nor my Rheumie has ever mentioned having a Dexa Scan. It really worries me that I have been on AA for such a long time without having a dexa scan first. I hate the AA tablet once a week and after coming onto this site and hearing how others try to avoid it or refuse to ever start it, I am beginning to wonder if I ever needed to take it in the first place....a Dexa scan would confirm one way or another. You are right to have misgivings and if you don't need to then don't go back on AA. I will definitely be asking for a dexa scan at my next rheumy appointment especially as my teeth have started to be painful, something to be aware of taking AA. Good Luck....Mazz

Rugger profile image
Ruggerβ€’ in reply tomzz70-70

Yes, your GP can request one from the local Radiology (X-Ray) department - in the UK, that is. I only had to wait a couple of weeks for mine. It only takes about 10 minutes and you're not enclosed, like in an MRI scanner, so not claustrophobic!

PMRpro profile image
PMRproAmbassadorβ€’ in reply toRugger

It depends where you are - in Durham for example it is Medical Physics that housed the dexascan.

mzz70-70 profile image
mzz70-70β€’ in reply toPMRpro

Hampshire's my county and the QA hospital brilliant (most times)

mzz70-70 profile image
mzz70-70β€’ in reply toRugger

Thanks Rugger and yes my Gp is sending me for a Dexascan ! Actually it was a GP I have not seen before, a newby I think but she said I should have had the scan at the beginning of my treatment. She is against AA unless its really nessersary. My usual GP had never suggested a Dexascan and to be honest I had never heard of it until I joined this marvellous forum....don't know where I would be without it now.....head in the oven probably ! (don't mean it)

Chrissy1953 profile image
Chrissy1953β€’ in reply tomzz70-70

Good for you mzz70-70. I didn't know about AA and effects until I joined this group. Actually I didn't know anything much about PMR apart from what my Dr, printed off when he first thought this was what I had. The wonderful people on here have allowed me to take control of PMR with their help and advice. I have also bought Kate Gilbert's book from Amazon. It's a must read. As for putting heads in ovens if you look at my previous posts you'd have have no problem at mine. I forget to put the oven on😁😁 good luck with your scan. Had mine Friday and my bones are strong and healthy so no more AA for me

mzz70-70 profile image
mzz70-70β€’ in reply toChrissy1953

Hi Chrissy, glad to hear your bones are strong and healthy. I do hope that will be the same for me, I really want to stop taking the AA now. LOL over your oven story, actually I have electric oven so I would be lying there a very long time without result. I love life really, just the PMR gets in the way ! Take care...Mazz

PMRpro profile image
PMRproAmbassadorβ€’ in reply tomzz70-70

Oooh - hang on to her!!!!!

mzz70-70 profile image
mzz70-70β€’ in reply toPMRpro

Yes PMRpro, hanging on tight, really hope I can keep her, she seems to have an understanding of PMR.

tgca profile image
tgca

I think the dexa scan can be organised through your GP

mzz70-70 profile image
mzz70-70β€’ in reply totgca

Thanks. Yes In have now got an appointment for a Dexa scan, wish I had known about it from the beginning...but hey ho better late than never.

kezzybabes profile image
kezzybabes

I had a dexa scan a couple of months ago after hassling my (previous) GP. Told him I was unhappy about taking AA. He was NOT happy. I decided to stop taking AA off my own back, had a dexa scan which showed normal bone density and now go to a lovely GP in the same practice who has taken me and my PMR under her wing. Following Dorset Lady's tapering system and now at 3mg.

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