Update on dexa scan refusal

[Yorkgirl2]

Hi everyone. 2 months ago I posted that I’d been refused an NHS dexa scan. Well to cut a long story short, I decided to pay for a private one. We live near Exeter but I had to go to the Nuffield in Cheltenham to get this done! I got 7 pages of report back (this was also sent to my doctor). In the mean time my GP referred me to a Rheumatologist . After a follow up drs appointment he thought that the scan results were good but to go into more details with the Rheumy the next day at my appointment. My GP is very supportive and we agreed that I would continue to reduce the Pred by .5mg very 4 weeks. Previously I’d been reducing by 1mg which was fine until I tried to get from 13 to 12 then I had to go back up and wait before I could reduce again by the agreed .5. This seems to be working ok . The first week of reduction is a bit rough but the next week things gradually settle down and I feel ready to try again after 4 weeks. At the Rheumy appointment he thought that .5 every 4 weeks was too slow and wants me get off the Pred as soon as possible (don’t we all want to do that?!) He suggests reducing .5 every 2 weeks. I’m not too happy about this but I’ve decided that I’ll try it, so fingers crossed. Anyway the results of the dexa scan showed that (according to the letter just received from the Rheumy) that I have excellent bone density!! The only blip was that because of my Osteoarthritis the scan couldn’t be clear on my lower spine. After looking at my scan results he didn’t mention taking AA or an alternative. I’ve battled not to go on these drugs unless really needed and I’m so glad that I stuck it out and went for the scan. For anyone else going through the same keep battling it’s worth it in the end. Thanks to everyone of you who replied to my last post and gave me the confidence to see it through.

[DorsetLady PMRGCAuk volunteer]

As we often say - you can but try it their way .. and see what happens.

But as we also say, every 2 weeks [even at 0.5mg] can still be too quick to know current dose is okay before you step down... but at least with a smaller reduction you have a better chance of getting back in line.

[piglette]

I get so annoyed when doctors, whom we should trust, give ‘bad’ advice such as reduce to zero immediately when you are on 9mg.

[PMRpro Ambassador]

He wants you off pred asap - well gosh, don't we all? But it isn't him to say and he obviously hasn't a clue about the nature of PMR does he!!

[Yorkgirl2 in reply to PMRpro]

I must when I came out of the appointment I felt that his attitude was very dismissive and I felt quite upset about it.He made a point of saying that he didn’t mean to be dismissive but that PMR isn't life threatening and the sooner I stopped the Pred the better. We all want to get off the Pred but as we know everyone is different and this has changed my life. My GP is very supportive and so I’ll stick to his advice and of course all the lovely people on this forum who are invaluable. Thank you

[DorsetLady PMRGCAuk volunteer in reply to Yorkgirl2]

PMR in itself isn’t life threatening -but having uncontrolled inflammation from the PMR can make life very miserable for you, and affect your body in other ways as well as a possibility of GCA and potential sight loss.

Some Rheumies need to read up on PMR rather than just diss Pred!

Why some seem to think patients enjoy being on Pred beggars belief.

[PMRpro Ambassador in reply to Yorkgirl2]

But that was dismissive - of the disability and pain that it causes and makes life pretty hellish. But because it isn't life-threatening, we are dismissed, Would he speak to an RA patient like that? It isn't our fault the only option for management is pred.

[123-go]

”…didn’t mean to be dismissive…”! Huh! What a load of rot!

[Sophiestree]

you didn't put what your dexa results were? Good I am assuming?

I would think 0.5 a month at the very least rather than 2 weeks. My rheumy says 0.5 every 8 weeks and I struggle on that!

[Yorkgirl2 in reply to Sophiestree]

My dexa results were very good,thankfully. I’ve been on 11.5mg for 2 weeks and agreed to try to reduce it by .5 now. So we’ll see how it goes

[AyJayBass]

My Rheumy would say that 0.5mg per 2 weeks is much too fast. He has me on a tapering schedule which takes 4 months to reduce by 1mg

[Bcol]

Have to agree with the majority here. O.5mg every two weeks is ridiculous and more than likely to mean, in the long term, that you end up taking more Pred than you would with a sensible taper of every four or five weeks.