Prednisone Alendrolic acid -Dexa scan

[Bobbury]

The GP has now informed me that at 73 and I deemed be to be at high risk because of pred and bone thinning NHS will NOT give you a scan. If your under 65 and are deemed at high risk you can have the scan. Would appreciate any input, thanks

[123-go]

Rubbish! ……unless the recommendation has changed over the last few years:

nhs.uk/conditions/dexa-scan/

[DorsetLady PMRGCAuk volunteer]

Agree with 123-go

-and link says this -reviewed Oct 2022,

When a bone density scan is recommended

A  DEXA scan may be recommended if you have an increased risk of developing a bone problem like osteoporosis. Your risk is increased if you:

have been taking medicines called oral glucocorticoids for 3 months or more – glucocorticoids are used to treat inflammation, but can also cause weakened bones

Print off link show or forward to GP.

[Bobbury in reply to DorsetLady]

I’ll give it a try but you know from all my past posts my GP is not the easiest guy to get on with. What do you do when they dig their heels in. Last time I made remarks about this GP I was reprimanded by admin! The GP said he went on the NHS web site to book and was rejected with those remarks. Not fair I think!!

[DorsetLady PMRGCAuk volunteer in reply to Bobbury]

Suppose the NHS may give conflicting advice (no surprises there then) - but the above does say -

A  DEXA scan may be recommended -

So not sure what leverage you have -but maybe worth a try.

[Hidden in reply to Bobbury]

Sounds like my gp

[Bobbury in reply to DorsetLady]

Thanks, I’ll give it a go!

[Bcol]

Agree with DL and 123-go, absolute piffle. I've had one this year when 73 and one two years ago when 71.

[123-go in reply to Bcol]

Don’t know what he’s on but I wouldn’t take anyway 🙄.

[piglette]

Your GP is WRONG. Where on earth did they get that information from? I do agree that Dexa scanners are rather like gold dust, but they are there to be used. I have read in some places that GPs should offer bisphosphonates if over 65 and not bother with a dexascan. It does not say you cannot have one though.

[PMRpro Ambassador in reply to piglette]

Add to which this assumption that you have rubbish bones if over 70 is tripe. I'm 70 and have been on pred for 14 years and I don't think I'm crumbling - I was OK 2 years ago. Must get a scan booked though - I don't have to beg for one.

[piglette in reply to PMRpro]

Bobbery may be like me with a T score of 2.7 and a Z score of 5.1 but even then my GP wanted me on Alendronic Acid!!

[Suffererc in reply to piglette]

is that a good or bad score please

[Sophiestree in reply to Suffererc]

Bad.... pretty awful Z Score

[Bridge31 in reply to Sophiestree]

it’s a very good score isn’t it ?

[piglette in reply to Sophiestree]

Sophiestree I should have said +2.7 and +5.1. They are not negative scores. They make me look like I have stainless steel bones.

[Sophiestree in reply to piglette]

Plus!!!! AMAZING! what on earth are they doing offering you AA with those scores. You lucky thing!

[piglette in reply to Sophiestree]

Because my GP works on tick off lists! PMR = steroids plus bisphosphonate (AA) if over 65!

[Blossom20 in reply to piglette]

'Ti ck off list' - is that what they do? So that's why I was automatically sent away with 3 meds when I started Pmr. Pred, Aa and Omeprazole. !

[Sophiestree in reply to Blossom20]

Yes, sadly all too common

[Bobbury in reply to piglette]

Your absolutely correct. When first had symptoms of PMR I was given all sorts of drugs, Zyloric and diclofenac. Nothing seemed to do the job. Search ed internet, my symptoms matched PMR took a copy to the GP….. He then said “I thought it might be that” !!!!

[Broseley in reply to Bobbury]

Me too! I was told to get a massage! I researched, suggested a blood test for ESR and CRP, and that I may have PMR. It was during lockdown and apart from the blood tests, was all done over the phone and I had to wait 4 weeks between each appointment.

[Bobbury in reply to PMRpro]

Thanks for replying and to everyone else. So what do I do now.?The GP said if I want one I should pay for it!!!

[Longtimer in reply to Bobbury]

Do you see a Rheumatologist, if so you could try him....just a suggestion...

[PMRpro Ambassador in reply to Bobbury]

I know what I'd say but it probably isn't a good idea!

[Bridge31 in reply to Bobbury]

Collect a list from here of the number of people who have had one ? I had mine recently and I’m 76. No problem with the request and the appointment came through in under 4 weeks.

East Anglia.

[borednow in reply to Bobbury]

Have you had a face to face talk to your GP? I think a bit of serious redirection might be due. If he's refusing to treat you then I would have thought you have nothing to lose. Or you can ask him to put his reasons for refusing you a scan in writing? Either way, don't give in. We are slowly (very slowly) in a very rebellious mood in my village - I can feel a revolution coming on!! Good luck.

[Sophiestree in reply to Bobbury]

Are you happy to pay for it? Or more, can you pay for it? Like others, maybe the Rheumatologist is a better route. I pushed quite hard with mine after they were resistant.

[piglette in reply to Bobbury]

Dexa scans are like gold dust so it may take a while to get a scan on the NHS. It looks like we are being forced into doing a lot of things privately nowadays. At least you will not need another for two or three years. Vista Health do them for around £125.

[Bobbury in reply to piglette]

Thanks Piglette. Im going to take a step back, consider my options and decide what my next course of action is going to be. It’s bad enough having this wretched PMR without having also to battle for stuff!!!

[Suffererc in reply to PMRpro]

I had the Rheumatologist write to my GP with that info about ‘does not need Dexa as 73 years old.’ Yet last Dexa said repeat after 2 years. Then the elderly get blamed for blocking up the GP and NHS facilities

[Kendrew]

Definitely incorrect. Agree with what everyone else has said. Xxxx

[Miserere]

I find that hard to believe - I had a scan at 67, no problem, and it is due to be repeated in anotehr 18 months.

[Retallack]

I had no problem when asking my GP for the scan. Done 2 years ago at aged 71 and radiographer said to repeat in 3 years and stop AA as result was good.

[Deyazlex in reply to Retallack]

requested and had dexa scan last yr (78) after 5 yrs on pred, results satisfactory (?) and taken off AA. No problem, no resistance from my request. So sad/angry to hear how GP’s differ

[Suffererc]

I have been told the same. Why is the age 73 a cut of point. Feel abandoned by health service

[2013mayo]

hi

That’s absolutely rubbish, I’m 69 and have just had a scan due to the fact of taking long term pred. Ask your doc for a dexa scan, insist. Hope you get sorted.

[Flivoless]

I had a Dexa scan at 71. The resulting report was very technical, it read, "patient unlikely to need a hip replacement for at least 10 years". Very good but no mention of anywhere else. ⚠️

[Carrollee]

🤔 I had one last year at 67. My rheumatologist suggested it, I didn’t even ask 🤷🏼‍♀️

[Rugger]

It looks as if your GP has read the BSR & BHPR guidelines for the management of PMR which states that for over 65s a DEXA scan is "not required"!

pmrgca.org.uk/information-a... - scroll down for the guideline and then see page 3.

[Blossom20]

I never took the AA having read about it. I fell off my bike last week (the chain came off) - landed full force on my hand! Glad to say, nothing broken! My bones must be OK! Fingers crossed...

[Tiggy70]

I’m almost 3 years into PMR and despite numerous requests have been denied a DEXA scan. I’ve had two private scans now.

[Broseley]

I had a DEXA scan aged 62 because I requested it from the GP. This was before PMR diagnosis and my main problem was my hip pain. I was subsequently diagnosed as osteopenic and put on AA. My lowest T score was -1.2 on neck of femur.