experience with bophosphonate infusions

[Tiredcat]

My doctor says I need to have biphosphonate infusions ( she has given me a pamphlet referring to zolendronate infusion, a form of biphosphonate), as I have just had the results of a dexa scan back, showing I have osteoporosis (T score in hips 2.9). I have only been on prednisone since April, so I think that is too short a period for the prednisone to be responsible. I have to say I have been amazed, I always thought I was such a toughie, and was sure my bones would be fine.

What has been the experience of others with these infusions? I have the idea I have heard and read there can be some negative aspects to them. I want to have an open mind, but my experience with prednisone has made me a bit nervous of side effects now.

[Constance13]

I had biphosphonate infusions for 2 1/2 years every 3 months with no side effects.

T-score -3.25 at first, it went down to -1.65 afterwards. I'm due for another Dexascan this week.

[Tiredcat in reply to Constance13]

Thanks for your reply Constance13. Encouraging to hear you had no side effects.

[Constance13 in reply to Tiredcat]

However, I made a mistake, sorry! I have looked it up since)😏 last scan was -2.2, still a great improvement though. As said I stopped taking taking the bi.... six months ago. It will be interesting to find out what the new Dexa scan reveals.

[scats]

I'm glad you've had a dexa scan. My dr said the same to me, I didn't know about dexa scans so I went ahead.

I had an infusion of zoledronic acid.

The infusion went well, I just sat in a chair for 20 mins. I had no immediate side effects. I developed a bad taste and texture in my mouth a few days later which lasted over a year and changed the taste of all I ate. I have no way of knowing that it was caused by the infusion.

My main problem has been that my dentist will not remove teeth and I have to go to the local hospital to have this done. He says he has taken advice and that the increaced chances of jaw necrosis concerns him. From what I have read this is not that great but it's enough to put him off.

I later had a dexa and it turned out my bones were fine and I hadn't needed it.

I only had the one infusion thanks to information from the forum, but I'm again waiting to go to hospital to have a tooth out over two years later.

I hope this helps, you may have better teeth than me!

[Tiredcat in reply to scats]

thanks for replying, scats. Yes, I will see a dentist, I see how it could be important. When you say you only had one infusion because of information on the forum, what do you mean? I think that's the information I am looking for.

[scats in reply to Tiredcat]

Mainly having the dexa scan, but you will find much discussion on bisphosphonates in past posts if you do a search on it.

I had my teeth checked as well, but I couldn't expect to be valid for 2 years. It might be worth discussing with your dentist.

[Tiredcat in reply to scats]

About finding discussion on biphosphonates on this forum, I am a bit of a computer dummy and haven't figured out how to bring a particular subject up. Now that I have raised the question myself I see related posts have popped up on the side-bar.

[scats in reply to Tiredcat]

Sorry, I had to go out. Did you find what you wanted?

[Tiredcat in reply to scats]

Yes, thanks, scats. My replies may be a bit out of sync with you people in the northern hemisphere, we are asleep when you are awake, here in NZ.

[scats in reply to Tiredcat]

Don't you believe it, some of us here keep some pretty strange hours!

[PMRpro Ambassador in reply to Tiredcat]

And I (in Europe) had a conference call with medics in the USA AND Australia the other night!

[Hidden]

Hi Tiredcat

I’ve had Zolendronic Acid Infusions

6 in total; 2 a year for three years.

It was however for a different reason as it was as adjuvant therapy following Chemo.

They were totally unremarkable, no issues at all.

Good Luck 🍀

Kind Regards

MrsN

[Tiredcat in reply to Hidden]

Thanks for your reply MrsNails. Interesting that you had no issues. food for thought

[Hidden in reply to Tiredcat]

So much so after the first one l thought they’d forgotten to add the ZA to the actual infusion.

[PMRpro Ambassador]

Why is she going straight to infusions rather than an oral version? At least with oral bisphosphonates you can stop if you do have problems.

But before starting either, you must get your dentist to carry out a full and detailed check-up and do any invasive work that may potentially be required in the foreseeable future. Many dentists refuse to treat patients on bisphosphonates, insisting they have to have work done in hospital. And once you are on bisphosphonates you must be really diligent about oral hygiene.

[Tiredcat in reply to PMRpro]

Thanks for your reply PMRpro. The doctor said I should have infusions because it would be better for my difficult stomach than an oral version.

If I decide to go ahead ,which perhaps I should, I will definitely take your advice and see a dentist first.

[PMRpro Ambassador in reply to Tiredcat]

OK - fair enough! Absolutely correct on her part.

But yes, do see a dentist - it may be difficult after starting bisphosphonates.

[GOOD_GRIEF in reply to PMRpro]

I'm getting Prolia infusions twice a month beginning next month. Can you imagine taking the orals first thing in the morning and then getting on a boat to go to work? Not happening....

[piglette]

I assume you mean -2.9, not a positive T score? -2.5 is still osteopenia so you are not too far into the osteoporosis spectrum at -2.9. You can improve things with weight carrying and diet. Several people on this forum have done wonders.

[Tiredcat]

Thanks for that piglette. Hmmm, yes, all food for thought.