Please share experience or advice re Risedronic acid and zoledronic acid use for low T score/ osteoporosis in GCA/PMR.

[Golfers1]

I have recently had a follow up Dexa scan. The last one was 2 years ago.

I have GCA and PMR. At 20 mg pred and reducing after a recent flare of GCA.

The scan has shown a significant deterioration in my lumbar spine but not in my hips/femur region which are still osteopenic.

L1-L4 5/6/2024. BMD 0.824 g/cm T score -3.0. Z score -1.3

30/9/2022. BMD 0.878. T score -2.5. Z score. 0.9

This has really shaken me as I wasn’t expecting such a drop. I was actually hoping it would be around the same reading. I am fairly active, walk a lot and still manage to play some golf and also exercise as per physio guides.

I did try taking Alendronic acid but had a bad reaction with stomach problems feeling generally unwell and my hair came out in handfuls. So I stopped.

Now being asked to take Risedronic acid and if not tolerated Zoledronic acid is the next step.

I am reluctant to take bisphosphonates but after this I don’t feel as if I have a choice.

If you could advise/share your experience that would be so helpful.

Thank you in advance.

[Supertech]

I have had zolendronic acid infusions with no problems with side affects at the time or otherwise.

I had three in consecutive years followed by a 2 year holiday when I had osteoporosis. My rheumatologist suggested another infusion in January 24, 9 months early.

Diagnosed with PMR in May 23 so taking pred increased my risk. My T scores got better while having the infusions but got worse while on the holidays. Two years ago my spine was T-2.5 after my consecutive infusions. I should have another Dexa scan later this year.

It is wise to get your teeth checked before you have the infusion.

[Golfers1 in reply to Supertech]

Thank you for your advice and yes I will mention it to my dentist as I am due soon. If I read your post correct I am right in thinking that a T score can improve on Zolendronic acid?

[Supertech in reply to Golfers1]

Yes that’s right, the T scores got lower. T-2.9 to T-2.5, that was after three yearly infusions.

[Sophiestree]

I could not get on with Alendronic Acid either, my scores are slightly worse than yours but I have resisted anything until pred hit the scene. I am very sensitive to anything stronger than Ibuprofen and so was very nervous when they suggested Zolendronic infusions but had no side effects at all. I can't say if it has helped my scores as I have also had a parathyroid removal which also affects bones, and so that in theory should also help my numbers. But in terms of how I felt and the fact it was only yearly I chose that.

[Exflex]

I had an enlightening chat with a maxillofacial surgeon last week whist he was operating on my neck (removal of a BCC sitting on top of the main artery to the brain). He informed me he was originally a dentist prior to re-entering university to train as a doctor. Great opportunity to ask about Bisphosphonate so told him my case being on steroids 4 years and risedronate for 3 years. He told me risedronate is ‘stronger’ (not his actual wording, but the meaning is about right) than alendronic acid. Half life of either is about ten years, so the effect as far as dentistry is long lasting. Being on for less than 3 years has less detrimental effect in terms of dentistry but 3 years and beyond more so.

I wish I had known about bisphosphonates before being handed them with my steroids when PMR was diagnosed. I think I would have declined risedronate.

[Golfers1 in reply to Exflex]

That’s interesting. Have your T scores improved though on risedronate?

It is such a difficult decision to make as so many possible side effects.

[Exflex in reply to Golfers1]

I had a Dexa scan approx 5 months after starting bisphosphenates and result was normal all positive values. I had a second Dexa in November last year, and scan was normal all T scores being positive. Who can say if Risdronate did the job or whether I would have been ok without.

[Ana-16]

I have had Zolondronic infusions with no side effects but do speak to your dentist and have any necessary treatment before the infusion. Best wishes

[Rubha]

Hello Golfers 1......Iike you , I have established osteoporosis and could not take Allendronic Acid. I tried for 3 or 4 weeks but my stomach was in turmoil. I have been switched to Risedronate and have no problems. Finally if that fails there is an annual infusion (for 3 years I believe). A A is by far the cheapest so obv offered 1st. The infusion is the most expensive. Don't despair and the last thing you want is compression fractures etc. Im fine with Risedronate , fingers crossed for you.

[Golfers1 in reply to Rubha]

Thank you Rubha, that’s good to know. I think it is the potential side effects that have made me reluctant so far but now my scores have worsened I will need to take action. Fingers crossed definitely.

[Rubha in reply to Golfers1]

To be honest, I have had no side effects from the Risedronate though we are all different…….e.g…..some folk can take AA. I try to rationalise ….all drugs have their downsides but it’s a question of managing the risk of not taking them . Good Luck.

[LemonZest11]

I have just started on weekly tablets of Risedronate. My doc asked me about my teeth, which are in good shape as far as I know. What is the issue with teeth and dental work while on Risedronate?

[PMRpro Ambassador in reply to LemonZest11]

Any bisphosphonate can increase the risk of necrosis of the jaw after invasive dental surgery - and that includes extractions. The risk is slightly higher with infusions but the risk is mainly for the high doses that are used in cancer management where they are on 15 times the dose we get - or more.

You should have a dental check including a panoramic x-ray to identify any latent inflammation problems - as far as I know doesn't quite cut it ...

[LemonZest11 in reply to PMRpro]

Ok, thanks. Doc asked me about teeth but they're OK, so I'm pushing on. Hopefully I'll turn this mother around!

[Golfers1 in reply to PMRpro]

There is that risk and also kidney function. What I need clarification on is if the T scores are shown to improve does that mean the osteoporosis can be reversed/improved? I didn’t think it could be on bisphosphonates but maybe I have read that somewhere and misinterpreted the information.

[PMRpro Ambassador in reply to Golfers1]

Depends on the person. In some the t-scores improve, others they don't. Something like Prolia/denosumab or Forteo will result in an increase of bone density but then you would switch to a bisphosphonate to maintain the improvement. Bisphosphonates also stabilise the bone substance even without increasing actual density.

[Golfers1 in reply to PMRpro]

Thank you. That makes sense and I am just reading up on the Z score.

This site is a god send for all of us so many thanks.

[PMRpro Ambassador in reply to Golfers1]

z-scores are meaningless - just comparing you with others of your age, Comparing rubbish with rubbish is still rubbish ...