Zoledronate Infusion

[lonelysunrise]

Would like to hear from anyone who has had experience of this, please! I have had PMR for just over 3 years and am on 3.5mgs of Pred daily. I haven't been taking the Calcium/Vitamin D meds because I can't tolerate them along with all the other meds! I had a Dexa scan two years ago which showed I had Osteporosis of the spine and Osteopenia elsewhere so the Rheumatologist has arranged for 3 Zoledronate infusions at yearly intervals. First next week. Thank you.

[bussell]

Good morning Lonely Sunrise. Just my personal experience. I have had two out of three infusions and the third due in March after which they tell me I shall have another dexascan. Zolendronate was recommended by the osteoporosis consultant as I couldn't tolerate AA. I've had no side effects at all. Hope this may help. (9 months into PMR and on 9 1/2 mg pred at the moment)

[lonelysunrise in reply to bussell]

Thank you - that was very helpful. My thoughts were that if tablets don't agree with you, you can stop taking them but once the infusion is inside you - you are stuck with it! Best wishes to you.

[SheffieldJane]

I declined a prescription for Alendronic Acid in tablet form following a satisfactory bone density scan ( DEXA). Others will be along, most of us are pressed to have it.

[PMRpro Ambassador]

You DO need an adequate intake of calcium when you are on the bone protection drugs too otherwise you run the risk of low blood calcium levels which can also cause problems. My husband can't take calcium carbonate so uses calcium citrate as he is on Prolia for osteoporosis. I have good bone density so now eat lots of calcium containing foods rather than taking calcium carbonate and we both take separate vit D, me as tablets and him as a spray.

[MrsNails]

Hi, l’ve had a Zolendronic Infusion & l’m sure l’ve written about it before (l will check) Totally unremarkable, so much so l was convinced they’d forgotten to add it to the drip the first time!

But it was exactly the same every time - l had 6 in total over three years as an adjuvant to Chemotherapy - last Dexa Scan Totally Normal & l’m due another one soon.

Best Wishes

MrsN

[lonelysunrise in reply to MrsNails]

Thank you, Mrs N.

[Portobello]

Hi, I had a Zoledronate infusion in March after a Dexa gave my t-score as -3.6. I declined AA due to reflux issues and was offered Zol or Prolia. Having done lots of reading I decided against Prolia! Despite trepidations I've had no discernible side effects. I took ROS advice and drank plenty of water before, during and after.In July I followed up with a REMS scan (unable to get one before infusion due to Covid). This showed my t-score had improved to -2.6 &-2.8. Fragility scores are in the osteopoenia range, so I am content. I will have another infusion followed by both scans to compare next year.

I stopped taking prescribed iCal & found digestive & urinary problems improved. I do take VitD & K2 with plenty of calcium in my diet.

Hope this rather long post helps.

[lonelysunrise in reply to Portobello]

Thank you! Very helpful. Now feel more confident.

[keeptalking]

I apologise first off for not agreeing with everyone else but I guess your asking means you want both sides of a Zolondronic infusion. My experience was very different. I started with the shakes, sweats, pounding head etc about six hours after having it. Lost a couple of days before coming round a bit.

I then got the most excruciating pain behind one eye which took me to Moorfields eye hospital on three occasions.

Unfortunately I think this affected the next 9 months of my PMR journey. I swore then that I’d never have it again.

BUT. Two years later I am awaiting a dexa scan as I am really struggling with painful legs.

If this shows osteoporosis or near it I will certainly consider trying it again or something similar. The thought of not being able to get around comfortably for the rest of my life is daunting.

Sorry this is long. Good luck with your decision making.

Ps. I should also mention I have a blood cancer which may have also contributed to my reaction.

[lonelysunrise]

Thank you, keeptalking! I am sorry you had a bad experience! I shall hope for the best!