Update on wait for dexa scan

[Looby60]

Hi there .

Update since finding out I had 4 fractured vertebrae. Not surprising still waiting for dexa scan !!! Oh dear Hospital it seems failed to do refereral as my dr found out 2 months later 😳.

So he sent referral last month. Had letter telling me they would decide if needed to see me or not .

Still can’t walk without sticks and or Walker . Good news is tho fingers crossed have reduced to 5mg pred . Other good news I finally get face to face appointment with my GP one year ago ln February since I last saw him when he diagnosed PMR.

There’s a song here called welcome to the Isle of Wight …. Hmmm providing you don’t want to actually see a Dr you will be fine lol .

[Coffeebeans]

Hope frustrating - hope you get seen soon and well done on the 5mg despite everything.

[Looby60 in reply to Coffeebeans]

Thank you it wasn’t easy but I thought with pain regime medication wise I’m on now was the best time to try . I was on 15mg when this started back in November. Unfortunately misdiagnosed as sacroiliac joint problem back then up to being hospitalised in March when I collapsed with pain and spasms .

[123-go]

Your fractured bones may have healed themselves by the time you see anyone! The waiting to know if you're going to see anyone at the hospital must be wearing.Physiotherapy may be helpful for you as long as the therapist is proficient in the field.

You've done so well to get to 5mg Pred with all that's gone on.

[Looby60 in reply to 123-go]

Had physio come to the house to get me this far. I’m told wedge fractures although can heal . Can affect shape of spine as it seems they cascaded from t12 down to l3 with shortening in l4 and I didn’t have a fall to cause this I merely bent into the oven to get food out . . There’s always a plus side tho . Hubby does all the cooking ha ha 👍

[123-go in reply to Looby60]

With your positive attitude your fractures won't dare not to heal 😀.Yes, quality of life is paramount and long may the laughing continue.

[SheffieldJane]

Well done Looby60! It must be your good cheer that drives you along, you’ve had precious little other help.

[Looby60 in reply to SheffieldJane]

I remain positive throughout , there’s no other way to be . Probable I will be unable to work again sadly after this but I will settle for less pain and a quality of life over work any day . Have had some laughs over predicaments have got myself in . Thank god my sense of humour is intact lol 🤣

[suenewberry in reply to Looby60]

I was diagnosed also with 3 wedge fractures. I was given help with an injection once a year to help with no more bone loss. I also researched what helps the body absorb calcium and found that seawead produced calcium is better absorbed by the body, with the help of other supplements. Back is bowing, but the pain greatly reduced.

[Looby60 in reply to suenewberry]

Wow that’s interesting to know . Any idea what the injection was please ?

[PMRpro Ambassador in reply to Looby60]

It is probably a bisphosphonate that is administered through a vein rather than as an oral tablet. The substance is zolendronic acid.

[Looby60 in reply to PMRpro]

Thank you 😊

[suenewberry in reply to Looby60]

Yes, as pmr pro says - not injection it is an infusion of zolendronic acid. It takes 15 mins to administer and u r good to go for a year. They will only give it to you for 3 years in a row. This is my second infusion. The irony is my dexa scan showed minus 1.1 and is in the osteopena range. A recent scan showed minus 0.05. I was not very mobile for 10months whilst waiting for replacement hips, and like you I stood up and the back went and the pain was excrutiating with the muscles going into spasm. I was PMR free when this happened. There is so much more help available if these problems occur. Regards to you and hope u get the help u need in the future.

[PMRpro Ambassador in reply to suenewberry]

The real irony there is that -1.0 is normal ...

[suenewberry in reply to PMRpro]

Now I am confused. I thought anything below 0 was osteopena, and minus 2.5 was where bones were at risk of fracture.

[PMRpro Ambassador in reply to suenewberry]

nof.org/patients/diagnosis-...

that isn't how it works. The scores are the standard deviations from the average. 0 is the average, a t-score of -1 is one standard deviation lower than average. The numbers are fairly arbitrary and there is no score that says a fracture is more likely - that depends on the mechanism of injury and it is said the majority of fractures occur at normal bone densities. In fact, it is alleged that when they decided what was osteoporosis they just chose a number. The rate of fractured hips was already falling considerably before the widespread use of bisphosphonates - there are lots of ways of reducing the likelihood of a fracture. Low bone density doesn't actually equate directly to bone fragility - there are other factors like flexibility of the bone - like how a dry dead stick will break much more easily that one that isn't dry and hard.

[suenewberry in reply to PMRpro]

Thank you