Zoledronic acid success?

[Jemima48]

I've just been offered a zoledronic acid infusion, having failed to respond to teriparatide. However, I also didn't respond to alendronic acid before that and know zolendronic acid is in the same 'family'.Has anyone done well on zoledronic acid having failed on alendronic acid?

Thank you.

[Rooruby]

Have you underlying reason why teriparatide did not achieve any bone building. I have started this so hoping I don't have 2 years with no good results. Did you make sure you was taking at least 1000mg calcuim daily

[Jemima48 in reply to Rooruby]

Hi, you probably don't have to worry as it's effective in 96% of people. My consultant just shrugged when I asked him why I might be in the 4%. Apparently quite a few people don't go on injecting (I did), which presumably means it's even fewer than 4%.I don't think I was properly monitored throughout and my Vitamin D levels definitely dipped at one point. I take 1000mg of calcium every day and 20 micrograms of D3. Some say you need a K2 supplement for the Vit D to be absorbed, as it's difficult to get enough from food.

If I were you, I'd ask for P1NP tests, as it's so long into the treatment before they do a DXA. I insisted on these and believe they flagged up an early warning (after 5 months) that all was not going as it should, though this was not acted on.

You should also make sure they do a PTH test (via blood) before you start, as any problem with this means you don't absorb.

Best of luck - it's not an easy treatment and crushing when it doesn't work.

[Rooruby in reply to Jemima48]

Thanks I did have PTH test in November when I started all good. I also am having a private REMS scan in October which will be nearly a year in so they are meant to be more accurate and also 45 minutes with a very good consultant so we will see. You take care too.

[Fatpidgeon in reply to Jemima48]

Hi Jemima48,Thank you for flagging up the P1NP test. I didn't know such tests existed. I also haven't heard of a REMS scan. Are these only available privately?

I do hope you get some understanding why you aren't responding to treatments. Would it worthwhile revisiting the tests to exclude other causes of Osteoporosis like Myeloma, Mal absorption diseases like caealic disease as hyperparathyroidism and Vitamin D deficiency?

Best wishes

[Jemima48 in reply to Fatpidgeon]

Thanks, I'm pushing for these. I happened to read about P1NP, which the NHS - or at least my hospital - doesn't seem to offer as standard.REMS are quite new, the jury's out on them, they don't directly compare with DXA and my consultant had never heard of them! They're only offered at a few private centres in the UK. I made an enquiry, but never heard back after I mentioned I had metalwork in my spine!

I hope this is useful.

[Fatpidgeon in reply to Jemima48]

Yes, thanks.

[questionably]

Jemima,

the usual reasons teriparatide doesn't work are parathyroid or kidney problems.

The reason for P1NP before treatment with teriparatide is to make sure the medication is working by having P1NP after 2-3 months of treatment. If the P1NP hasn't risen, the parathyroid glands should be checked.

With zoledronic acid you need CTX before the infusion and after three months. If the CTX doesn't drop 20%, the medications isn't effective for you. And your doctor needs to pursue secondary casuses.

Zoledronate is a much stronger medication than alendronate, partly because it is infused and less is sacrificed in the digestive tract.

You are more likely to have adverse reactions with zoledronate. You should ask for a slower infusion with a greater dilution of the medication.

I would want to be sure of both kidney function and parathyroid function before taking a new medication.

Best wishes

[Jemima48 in reply to questionably]

Thank you! I just stumbled across bone turnover markers (including CTX) yesterday - I've found you have to be very proactive and do all your own research! Shall definitely be asking for these before my infusion.

[questionably]

The markers were unreliable in the 90s, now they are. Some professionals cite unreliability. You do have to fast and have an early morning draw. Biotin and collagen should be discontinued for several days before the test. Happy to help.

[ROSModerator Partner]

Hi everyone,

We just wanted to drop in our factsheet on bone markers for anyone coming across the thread who'd like a bit more information to read: strwebprdmedia.blob.core.wi...

Hope this feels helpful for some

Take care,

Lulu

ROS Moderator