Rheuma wants me on alendronate?! What are your t-scores?

[krillemy]

So, I saw my new Rheuma for the 2ed time. I was prepared to explain how affull I felt (flair), and why I needed to go back on 10 mg, but I could have saved my breath. He could tell from the way I rose from the chair and walked towards him! "You are not so flying anymore?" he said.

So we agreed to go up to 10 mg (I am so much better, by the way). "Maybe you are one of the few who needs pred. for many years or forever", he said!

That´s news to me coming from a doctor. I have been fighting for every single pill as if it was morphine for 4 years, so I am so relieved. The pain in my jaw should resolve, or I should come back he also said.

But - he now wants me on alendronate. First he said it was not necessary (when he called me), but now that I go back on 10 mg, it´s different. I have light osteopeni in my hip necks -1,3 and -1,4 (I am 55). Everything else is 0,4.

3 years ago it was -1,2 and -1,0 so in 3 years it has gone down.

How are your numbers? I would like to wait and see for some years if it becomes worse, as I don´t think that my numbers are that bad, and the prospect of taking alendronate for the next 30 years is scarry.

What do the experts inhere say and what experience do you all have on this?

[PMRpro Ambassador]

I certainly wouldn't accept alendronic acid with scores like that - calcium and vit D (more than is the supplements) and maybe other supplements but NOT a bisphosphonate. And another dexascan after 2 years. Those t-scores are better than mine after 3 months of pred: -1.3 and -1,5 I think, in over 11 years I went to -1.6 and the local osteoporosis guru who'd been champing to put me on something and I had told her to enjoy her weekend because I wasn't taking a bisphosphonate said fantastic, carry on what you are doing.

HeronNS has her story on record

healthunlocked.com/pmrgcauk...

[Bridge31 in reply to PMRpro]

My results say abnormal and contact patient. However no contact has been made in over a fortnight.

Reading the post it looks like I have nothing to worry about for now. I do find those symbols confusing !

Spine -1.1, Hip -0.7, Femur -0.8

[PMRpro Ambassador in reply to Bridge31]

Huh? The computer identifies anything outside certain set figures and flags it, Normal is anything less than -1,0 in the t-score - so your -1,1 represents outside the normal range - therefore "abnormal", It is however barely osteopeneic and all that means is your bone density is lower than that of the average 30 year old!! It is NOT a state that requires medication.

Does this help?

s4be.cochrane.org/blog/2018....

It's the good old bell-shaped curve. If the score is zero, you are slap bang on the mean (average is the innaccurate term). As far away as 1 standard deviation, + 1,0, the result is taken as normal. -1,1 is barely outside that so really not worth worrying about. The arbitrary definition of osteoporosis as a density that falls worse than -2.5 - and it is said that it was a number plucked out of the air without any real evidence as to what was really risky. I don't know if that is true - but low bone density doesn't necessarily mean it is more fragile and the vast majority of broken bones happen in people with "normal" bone density. Someone got excited as I have a history of a broken bone - a high speed skiing accident and I got the typical spiral fracture of the tibia at the age of 40-ish. Hardly any link to poor bone density.

[krillemy in reply to PMRpro]

Thank you. Spot on! I agre. I eat well and tage ekstra calsium and vitamine D and I walk a lot and I am overwight. So I will decline and have a dexa scan in 2 years. I Mighty let the Doctor stay on the belave that I take Them though. No need to Challenge his will to prescribe pred 😊😅

[Bridge31 in reply to PMRpro]

Thank you. You really are a mine of information ⭐️⭐️⭐️

[PMRpro Ambassador in reply to Bridge31]

Signs of a misspent youth probably ...

[Bridge31 in reply to PMRpro]

symbols seem to be missing

[Broseley]

I also had 'abnormal' results of T -1.2 for my right NoF. GP put me on AA which I've been on ever since (2 years in July) and calcium and vitamin D.I haven't had any problems with it, but I am careful to follow the instructions to the letter.

[PMRpro Ambassador in reply to Broseley]

And all you probably needed was calcium and vit D with a reading like that!

[Broseley in reply to PMRpro]

She said it was because I was starting pred (at the time) and I would need the extra protection due to the damaging effect of pred. I've just checked and it was actually T= -1.1.

[PMRpro Ambassador in reply to Broseley]

Yeah - hear that all the time. Loss of bone density with pred is NOT inevitable - as several on the forum can attest.

[Broseley in reply to PMRpro]

I'll press for a repeat scan in June, then hopefully I'll come off the AA.

[Sophiestree]

I think with numbers like that you are certainly not in the area of needing anything other than Vit D and good diet. How bonkers is that. They are so keen to give these things out. Mind you my doctor thinks I take Omeprazole every day before pred and I decided it was easier for them to think that.You're at the right age for numbers to change, but seriously, they are good so I wouldn't add anything else to your list of concerns, we have enough to gauge each day as to why we feel the way we do, now is not the time to add another unnecessarily.

[krillemy]

Thank you! I agere! See My response to PMRpro as well. I will let the doctor think that I take them for now 🙏😊