Private DEXA scans: I have noted a few people... - PMRGCAuk

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Private DEXA scans

nevagivup profile image
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I have noted a few people reporting they cannot get a DXA scan through their GP. It is of particular concern when they are told to take Alendronic acid to protect their bones. I had two scans done at a 2 year interval. When the next 2 years had passed my GP said I should take Alendronic acid. I was refused such a scan by my GP who said that NICE does not approve of these scans for people after 74 years of age "because most people after that age have some degree of osteoporosis anyway. so take the drug." I was a few months older than 74 and had been on Pred for PMR for 7 years! I said I would have one done privately because I was not prepared to take a drug which I knew from a test run a few years before had made me feel very ill, even after following instructions to the letter, if there is no clinical need to take it. With the doctor's approval I had a scan done at the London Imaging Centre for £65. They do a comprehensive scan of both hips and the lower spine. A full report was sent to my GP, stating emphatically that I did not have osteoporosis. There are DXA scans available in other major cities of the UK. Here is the link to the London Imaging Centre for those in the south-east.

london-imaging.co.uk/

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nevagivup
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13 Replies
SheffieldJane profile image
SheffieldJane

Congratulations nevagivup! I am glad you were proved right. You have just spared yourself a rotten couple of years. Money well spent and what a mental boost to learn that you are in fact a spring chicken!

Have you been very good about taking your Calcium and vit D?

I try to be, but it seems to inflame my bladder ( by process of deduction).

nevagivup profile image
nevagivup in reply to SheffieldJane

I took prescribed Calcium for 4 years. Then an ultrasound scan for a possible kidney stone revealed that I was laying down calcium deposits in my aorta and pelvic blood vessels. Guess what? I stopped taking it immediately! My bones are still strong 5 years later, but yes, I take Vitamin D every day. We have to be our own advocates for our health and have a duty to ourselves to educate ourselves from the wealth of information available online and from some of the contributors to this forum. I am one of the lucky ones, really. Blood sugar was too high, so was cholesterol and blood pressure, but as the Pred has been reduced DSNS to 3.5 mg a day those danger markers have also reduced and my good cholesterol is in charge. But now waiting for Synacthen test. Hey, we have PMR, but we manage most of the time. We get fed up some of the time, but so do other people without PMR. It's life.

SheffieldJane profile image
SheffieldJane in reply to nevagivup

I am having an ultra sound scan at the end of the month for possible Aortic Stenosis . I didn't know that about Calcium. You live and learn. I agree with the points you make. I have also requested a Synacthen Test because I am staggeringly exhausted. They may not agree because I am still on 7 mgs. It is as disabling as the pain was ( I think) merciful blurring of the memory.

BonnyQuine profile image
BonnyQuine in reply to nevagivup

Thanks for the v useful info re dexa scans.

I've been taking vit D3 for several years, as vit D deficiency is so common in our northern latitudes. (You're ok if you get lots of sun.)

But ref calcium, I believe hypercalcaemia (too much calcium) is not uncommon, nowadays, and wonder if this is linked to the habit of always taking it w vit D. We definitely don't always need both. My son's friend (30s) had serious heart trouble, apparently connected with hypercalcaemia due to overdoing calcium supplements. It seems straightforward to include enough calcium in a healthy diet, and I'd be cautious about taking extra, unless proved to need it. Link to dexa scans . . .

Unfortunately for me, the other way to prevent osteoporosis is exercise - easier said than done, in my case.

Vit D3 - yes. Calcium - be careful.

Marilyn1959 profile image
Marilyn1959

When I was a Headteacher we organised for staff to have DX scans biannually, via mobile scanner in school, as part of well being programme. It picked up issues for a couple of staff who would have been otherwise unaware they had a problem. That makes it a good investment in my book! We never went for investors in people award though, since for the costs of the award we could actually spend the money on implementing a wellness programme rather than the certificate!

I too was refused DEXA scan (I'm 66) by my GP. Also refused to take AA tablets until I had one. This morning received next appointment to see Rheumy end of January . Will ask him for a scan. I take Accrete D3 tablets twice daily. Rheumy prescribed these and AA without explanation - just said you need to take these. I thought it was just vitamins/minerals until I read leaflet !!

PMRpro profile image
PMRproAmbassador in reply to

Nothing like informed consent is there - and that's nothing like informed consent.

I resent being treated as a moron...

Due to Rheumy and Dr's 'advice' I'm now on 17mg, reduced from 20mg , daily, before they meddled I was on 15 ! |Hmm, roll on January appointment.

On another point, I was chatting at bus stop with a lady. She gradually lowered herself on seat. Turns out she's got PMR. While discussing our plight she mentioned how anxious she gets before venturing out. I realised I'm the same, and often not sleeping the night before. It's almost as if I'm scared of being stranded when hips/legs start aching. |On several occasions I've called a taxi to take me home. Got a trip to London on Friday for long weekend to see my mum. At least I can sleep on coach. I certainly now pack a lot less so holdall not too heavy!

nevagivup profile image
nevagivup in reply to

I know how that feels. When I flare it affects my gait and hips, and there is a vice-like clamp around my pelvis, so painful that if out and needing to get to the car, my walking gets slower and stiffer with every step. Getting into the car is achieved by sliding my bottom onto the seat, gripping my trouser leg with one hand and lifting my leg over the door ledge to the floor, the same for the next leg. Hope your weekend is not too tiring tansy13.

in reply to nevagivup

Thank you nevagivup. Will be good to see mum, she's 88. Has list of ailments but still going after breaking neck 4 yrs ago. It is inoperable but she said at time she wasn't going to lay on her back staring at the ceiling for rest of life - few days later was sitting up in bed, much to medics amazement. Also had broken hip repaired under local anaethetic! Also appeared this year on '24 hours in A & E' , disclosing to viewing public she had 3 bottles of Bailey's in sideboard!! For medicinal purposes. Got plenty of tweets from people wanting gran like her. Game old bird! I shall up my pred for few days to compete with her.

Marilyn1959 profile image
Marilyn1959 in reply to

Your Mum sounds like a real feisty character! X

Marilyn1959 profile image
Marilyn1959 in reply to nevagivup

Hi Nevagivup, you are describing how I was pre-diagnosis ie gripping trouser legs to get legs into car, as well as the struggle you have when walking. Are you on a high enough dosage of pred? I'm sure you needn't be experiencing these symptoms if pred level is right.

nevagivup profile image
nevagivup in reply to Marilyn1959

I have been on Pred for PMR for over 9 years. The symptoms I described above were when PMR was running riot and I kept relapsing. Sorry to confuse you. Not having those symptoms now. Been on 3.5 mg since early August and cannot go lower. Totally exhausted most of the time. Waiting for doctor to liaise with Endo for Synacthen test. The latter thinks it is likely that after so long on Pred my adrenals wont wake up. Hey ho! TTWIN. (That's the way it is now :))

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