Action Plan Update-Get a Dexa Scan- Easier said than done.

[Tarym]

That was plan last November but my GP refused to refer me, main reason given- on steroids you must have bone protection medication ........ Felt strongly I needed to know the state of my bones, all part of understanding and managing my PMR, (diagnosed September 2020). Tried the local private route- YES they do private Dexa scans - with a GP’s referral- brick wall! Plan put on hold but continued to learn so much from the forum particularly about managing my muscle weakness and fatigue that had become my main Pred side effect concerns, (just reducing to 14 mgs). January 2020 muscle problems resulted in a tendon pop in my arm ans another visit to my excellent physio who suggested another route to a Dexascan at a different private hospital (60 mile round trip), phoned- needed GP referral, but they gave me a private GP contact (another 60 mile round trip), which all finally resulted in getting a scan in mid March. Mission accomplished! Results are

lumbar spine T score.....-2.1

Hips T score.......- 2.2

Osteopenia

Private GP gave me FRAX 10 year probability of fracture results. Major osteoporotic...26%. Hip fracture....7.4%.

Still taking AA, 20 mgs Omeprazole, and AdCal. Fairly certain now AA didn’t cause muscle weakness, was due to me over doing things, had 5 weeks off it , GP recommended. AA does give me more acid reflux (long term problem, been on Omeprazole for many years, may have contributed to osteopenia?).

Now I know my scores thinking of doing another AA holiday for a few weeks to see if acid reflux reduces, ( pre PMR, 10 mgs of Omeprazole controlled it). Then will consult my own GP for his opinion on AA, (he had a copy of my Dexascan), armed with knowledge and more experience. Any forum comments are most welcome. In the meantime priority is to continue my slow tapering of Pred and hope to maintain my bone condition - now I finally know what it is!

[HeronNS]

As none of your results show osteoporosis I think you would be absolutely fine discontinuing the bone med. I am puzzled by the high 26% possibility of osteoporotic fracture. Have you read my story?

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to HeronNS]

FRAX takes being on pred into the equation ...

[HeronNS in reply to PMRpro]

Mine was only 10% with a previous fracture they took into account as well. I know my t-score was slightly better, but only slightly.

[HeronNS in reply to HeronNS]

Of course a few years ago I was a bit younger, maybe that made a difference too? Under 70.

[Tarym in reply to HeronNS]

Thanks for the speedy reply. I know I have read your story but now need to go back to it and re read it in the light of what I now know about my scores.

[PMRpro Ambassador]

It really is appalling - you need a baseline dexascan to know WHICH level of bone protection you need. If it is dire to start with then even AA won't necessarily do the job, it rarely increases bone density significantly, just maintains what you have. In over 11 years on pred my bine density barely changed and is still above the level at which treatment is considered. On the usual approach I'd have been taking the stuff unnecessarily.

[Tarym in reply to PMRpro]

Thanks for the reply. I couldn’t believe I was refused referral, that just made me more determined to get a scan! Interesting too that I feel a lot less anxious now I have the information, all part of being able to manage PMR.

[Suffererc in reply to Tarym]

Agree with you. Knowing helps our situation. If it wasn’t for this forum think I would be very depressed now. Glad you feeling better

[Bcol]

I find it difficult to understand why so many doctors, apparently, are so loathe to ask for a non invasive, non addictive procedure which will give a baseline diagnosis on which to base their treatment decisions. When my Doc suggested thinking about bone medication (AA) I asked if I could have a DEXA scan first and then, if needed, I would try the medication, she agreed straight away. As it happens my scores were absolutely fine and she's not mentioned it again. Just seems common sense to me,but what do I know.

[alvertta in reply to Bcol]

My doctor sends me once a year. No question about it.

[DorsetLady PMRGCAuk volunteer in reply to alvertta]

Yes, but you’re not in UK.....different approach.

[alvertta in reply to DorsetLady]

Yes. Ontario Canada. I was having them before GCA every few years. She has upped it to once a year now.

[Tarym in reply to Bcol]

It was reading about cases like yours and alvertta’s that made me determined to press on and get a scan . Unbelievable there’s such a difference in the way doctors approach treatment.

[Sophiestree]

I'm surprised you needed a referral for a DEXA. I booked one at my nearest private hospital when my consultant said I didn't need one and that there was 5 month backlog. They told me no referral was necessary but would send my results to my GP which was fine by me. I cancelled it in the end as I suddenly got a phone call offering me one on the NHS earlier. That is really strange and no reason whatsoever for your GP to refuse a referral? Unless they've run out of money in their practice!

[Tarym in reply to Sophiestree]

Interesting, I wonder if it varies from area to area? I had to travel to a neighbouring health authority. Have had money suggested as a possible reason, who knows?!! However, I did have good value for money with the private GP, a relaxed, lengthy first consultation about my concerns and a few days later a 30 minute evening phone call to discuss my results.

[Sophiestree in reply to Tarym]

I'm wondering if it was because it was the end of the tax year?? Who knows. Good you had a positive experience with private GP. A luxury with all that time!

[scrambledegg]

I have had PMR for 5 years and been taking AA for all that time. Had my annual check (over the phone) late last year and questioned whether I should still be on AA after 5 years as I thought the patient information leaflet said it should be reviewed at that stage. Just looked at my current one and it no longer says this. I asked for a dexa scan but my GP said ther was no point as I was on AA and shouldn't consider coming off it until I get down to 5mg. I'm on 10mg and just failed to reduce to 9.5mg successfully so no chance of that any time soon. I did have a dexa scan 5 years ago and it was ok. Now I'm taking 70mg AA every 2 or 3 weeks as a half way measure because I just can't decide what to do!

[PMRpro Ambassador in reply to scrambledegg]

"my GP said there was no point as I was on AA " - but she doesn't know if it is doing what it says on the tin which is actually just maintaining bone density rather than increasing it significantly. If it was dire at baseline - it could still be bad. It only works at all if the conditions are right - enough calcium and vit D are essential. There are far too many assumptions made that drugs are behaving the way the manufacturers claim.

[scrambledegg in reply to PMRpro]

So in your opinion I was right to request and expect a dexa scan and it's results would be useful?

[PMRpro Ambassador in reply to scrambledegg]

I think so yes - pred gets a very bad press for bone density effects and patients are forced on to bisphosphonates because doctors think they are harmless (because that is what the manufacturer told them). In fact, a lot of people's low bone density is due to earlier problems and often to being on omeprazole for years plus the doctors hand out pred and omeprazole together. In fact, 40% of patients on pred develop osteoporosis - the figure quoted for the general population in the USA is 50% of people have low bone density ...

[Tarym in reply to scrambledegg]

I know how you feel! I’m going to have to decide what I do now, it’s good to hear the experience of others, it all helps.

[DorsetLady PMRGCAuk volunteer in reply to scrambledegg]

This is what NHS says re length of time on AA -

Is it safe to take long term?

Alendronic acid is generally prescribed for a long time. While you're taking it, you're less likely to break a bone.

In a very small number of people, taking alendronic acid for more than 2 years can increase their chances of getting a rare type of bone damage in their inner ear and certain types of breaks to their thigh bones.

For this reason, your doctor will look at the benefits and risks of your treatment after 3 to 5 years and decide whether you should keep taking alendronic acid. This may involve some tests to check the strength (density) of your bones.

The benefits of taking alendronic acid generally outweigh the risks. If you're concerned or have any questions, talk to your doctor or pharmacist.

You are right it did used to suggest a pause after 5 years on Patient Info Leaflet (PIL) - but I’ve just checked a couple, and it seems to have disappeared.

But advice is check - only way to do that is a DEXA!

[PMRpro Ambassador in reply to DorsetLady]

Possibly because the interval before review recommended now is less than 5 years?? And that in itself is suggestive there is a problem?

[pugrescue]

Here in western Canada, I was scheduled for scan just after dx, took 6 months to get in. Osteopenia...most scores about -2.4. It was recommended I have another one in 1-2 yrs. Asked my rheumy for referral for scan at the 20 month mark, keeping in mind it takes 6 months to get one. Was told I cannot even schedule for 3 years from the first one. I am off pred now, so chances are at this rate I won't ever get one. Such is medical care now!!