Zoledronic acid

[AmandaTF]

Just been told I have to have another infusion . My first one was in Oct 2019 . Told my bone markers are still low. Anyone else experienced this as I thought these infusions were yearly for 3 years .?

[Kaarina]

I thought the same as you. Zoledronic acid infusion once a year for three years and then discussed as what to do in future. You should not have your next infusion until October 2020?

[1965Katy]

I thought they were twice yearly for 3 years. Are you having it for osteoporosis or breast cancer?

[AmandaTF in reply to 1965Katy]

Hi - I’m having it for re bound fractures caused by the stopping of prolia . Still waiting for specialist osteo nurse to return my call as I’ve queried it .

Thanks for reply x

[Hidden in reply to AmandaTF]

I can confirm that what Kaarina says is true. I have had 3 Zol infusions over a three year period, one a year. But I have Osteoporosis with 4 fractures. You said you have been offered it for rebound fractures after Prolia. Do you mean you have had rebound fractures, or are trying to avoid them. If you have rebound fractures, surely that means you have Osteoporosis and not Osteopenia so actually you should be offered treatment. Whether you accept it or not is up to you.

[1965Katy in reply to Hidden]

I'm going to be having twice yearly infusions for 3 years for my breast cancer but I also have osteoporosis, spine T score -3.3. Perhaps my oncologist is going to use a smaller dose per infusion. I don't know yet.

[AmandaTF in reply to Hidden]

Hi , I have fractures now caused by the stopping of prolia - apparently I should have been given an alternative to counteract the prolia . So yes I have osteoporosis. X

[Fracturegirl in reply to AmandaTF]

How many fractures and how soon after Prolia was stopped?

[Kaarina in reply to AmandaTF]

So you stopped the Prolia without going onto another OP medication. If you have had rebound fractures I would have thought you are now in the osteoporosis not osteopenia category and then yes, you will be offered OP meds. It is interesting that you stopped Prolia and were not offered another OP drug immediately.

[AmandaTF in reply to Kaarina]

Yes it Looks like my whole situation could have been avoided by me having the correct medication 😔

[Kaarina in reply to AmandaTF]

Indeed, yes, this is not at all good for you now. I am so sorry. Gentle hugs to you. [[[hugs]]]

[Goldencbc]

I think you are correct to ask why they are recommending an abnormal schedule for the infusion. How did you do with the first infusion?

[AmandaTF in reply to Goldencbc]

Felt a bit weird (probably all on my mind 🙄) I was diagnosed with the fractures on the Friday and on the Monday I had the infusion - so a bit of a rush . X

[Fracturegirl]

Where are you ? I thought every doctor in the whole world knows about the rebound effect by now. All this mess happened to me in 2018.

[AmandaTF in reply to Fracturegirl]

I’m in the UK . Can I ask how you are now ? I feel like I’m never going to get better . Been off work since October, really struggling with the pain . Mentally I’m not in a good place - so frightened of causing more damage . And as for my body image / don’t even know where to start 😞 x

[Hidden in reply to AmandaTF]

It's been 5 years since I fractured and I'm still in so much pain. I also have Osteoarthritis of the hip which makes the pain worse. I'm on Fentanyl patches and Oramorph, neither of which helps much. Top up with Paracetamol. 🤕

[HeronNS]

Yes they are annually for OP. I would definitely question being told to have another so soon. There is another drug, ibandronate (Boniva) which is administered more frequently.

[Fracturegirl]

Did the doctor not tell you to immediately go onto a transition drug when you stopped the Prolia? That is just criminal. I’ve had 7 rebound vertebral fractures spread over the 24 months after I stopped taking the Prolia. I was not warned about the rebound fractures. My last one was in July 2019. I can just now stand up for more than 20 minutes. I try to go and walk around the grocery store(it’s huge) at least every other day. I am gaining strength but it’s VERY slow because my muscles are all so weak from two years of recuperating from continuing fractures. I’m taking all kinds of minerals and vitamins and hope they make my bones stronger.

[AmandaTF in reply to Fracturegirl]

No other medication prescribed after stopping the prolia . I’m petrified of getting more fractures - I have 4 . Almost too scared to move

X

[catno1]

Hi Amanda TF,

Cannot help with the infusion advice, sorry. Just wanted to say your feelings are normal. In some of your replies you've mentioned scared to move and of more fractures. I hope you have support around you at home. Due to the pain, discomfort etc I've kept comfy loose nightclothes for the majority of the time since fracture last October. I feel stupid, old in a very strange way and want to hide. 52 like you! Learning to live with this is going to take time and practice. Not easy when appointments have to be met, you haven't slept all night due to pain/discomfort/nightmares. And trying to dress not only hurts but makes your temper explode due to the frustration of lack of medical care and advice that may have protected us from these rebound fractures as your underwear gets wrapped around you, refuses to move while the clock ticks and you can do nothing but remain calm, slow and cautious with every move knowing you have to keep going. Somehow.

In other words, I understand. As sadly you, me, and others, have learnt. It seems a lifetime ago since I pulled away from home in my car and popped into town to do something like raid a favourite store for odds and sods. We will get normality back but it's going to take longer than we would prefer with a few amendments to keep us safe. Keep going, we will make it,xx

[AmandaTF in reply to catno1]

My life in a nutshell 😞 catno1

Just baby steps - day by day .

It’s so tough but we can do it 💪

😘

[catno1 in reply to AmandaTF]

Good stuff. Needed the smirk your note gave me. Simple things eh! Take care. You know I mean it.xx

[sun_flower]

Yes yearly for 3 year's l had 2 but not the 3rd as my renal function deteriorated but my bones had built up quite a lot and now my renal function is slowly getting better l just have calseachew dforte twice a day now. Take care

[AmandaTF]

Infusion tomorrow 😱

CT scan shows fractures are still visible .

And Breathe !