hi everyone. I’ve been on here before but now I am really stressing out.
Just over a year ago I incurred 4 vertebrae fractures, incredibly painful, but I gradually recovered. Sadly I lost 2” in height. Subsequently I was sent for an MRI and, after, I received a letter from the hospital strongly suggesting that I start taking Alendronic acid. Which I reluctantly did BUT I couldn’t stay on it as it inflamed my windpipe.
So, next month I will have an infusion of zolendonic acid and I’m so stressed about it. I’ve studied all the possible side effects AND also what can happen once you stop having the infusions.
Is there anyone who has been in a similar situation- ie had the infusion(s) and can give me any information and advice.
Thankyou in advance
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Errp82
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What have you read about stopping the infusions? They're not like denosumab (Prolia) injections that need a relay drug afterwards, you can stop the annual infusions without any risk, in fact it's normal practice to give just 3, then have a medication break.
many thanks for your quick reply. What I’ve read is that, whenever you finish with the infusions, you are then extremely likely to incur many fractures.
In that instant, I would feel that I was only ‘buying time’. Ie just delaying the inevitable
That's the 6-monthly denosumab injections, not the annual zoledronic acid infusions. If you've read it about the infusions, you've been misinformed. I'm not saying there are no possible side effects to the infusions, but multiple fractures on stopping the infusions isn't one of them.
again, any thanks. You seem to be so well informed and I’ve taken on board what you’ve said. One or two more replies have been in the same positive so I am feeling much better. Again many thanks
People who post on forums are often the ones who have had side effects. People who have not don’t often visit these sites. I’d just like to say that I have now had three annual zoledronic acid infusions, and haven’t had any side effects whatsoever.
I haven’t come off the infusion yet, and don’t know what my treatment options will be after the appointment with my consultant next January. I’m in Holland, and it seems that they are starting to push Prolia here, but I’m not very keen on having that.
Hi, I was also terrified of the infusion and read all sorts of horror stories. I was reassured by an osteo specialist nurse. She said people always like to complain but don't bother to report the positive. In this internet age that is so true! I went ahead and had the infusion last year and have had no side effects. I plan to have two more infusions over the next two years. There are no drugs without side effects and the concept of losing my mobility was more frightening than than having the treatment.
I’ve been terrified to start any treatment after reading the terrible things on the forums. I couldn’t tolerate Fosamax and doctor wanted to start infusion. I denied it after reading everything. It’s good to hear something positive. My biggest fear is what if you do develop side effects after a yearly infusion, do they last for a year? Then, what?
Hi I had one infusion about three years ago but I never got another one due to me being on a high dose of steroids after a transplant. I have had no side effects. Char
Thanks for the positive relies. I just started my 2nd year of teriparatide and will go on the annual infusion next year. The "nice" thing about it is you get to take a break from it .
Please check out the facebook group on Reclast. They were helpful to me in deciding to take Zolendronic Acid next year. Also consider taking an anabolic drug first (Evenity, Tymlos or Forteo) as they build bone for those who have fractured then follow it with an antiresorptive drug such as Zoledronic Acid). There are facebook group too for those drugs. Hope this helps.
hi, Many thanks for your info and for your time. I’ve had so many responses that I am now feeling a bit more positive about my forthcoming zoledronic infusion.
Hello! I also took Actonel many years ago and it caused my esophagus to narrow and I had to have a dilation. For over a decade I took no medication. When my numbers worsened a couple years ago, my doctor wanted me to go on something. So, I had a Reclast infusion a little over a year ago. It took me almost a year to do it because I was so anxious about the side-effects. (I agree that you may have confused Reclast with Prolia, which appears to have more complications). I researched all the different options and felt the Reclast was my best bet. I drank a lot of water the day of the infusion and took a Tylenol and asked to make the infusion 30 minutes instead of 15. I did not have any side-effects at all. I am scheduled to have my second infusion later this morning and will follow the same protocol. I am hopeful that this one will go as well. I wish the same for you!
I was very reluctant to have the zolendronic acid infusion. In my mind, I thought if I just took tablets and had side effects, I could just stop, whereas an infusion stays in your body and so do the side effects.
After trawling through the options, tablets were no good as I have gastritis, I would not touch Prolia as I did not want rebound fractures if I stopped, etc. I am on Warfarin so would be bruised from the injections of Teraparatide, so I hesitantly settled for the infusion.
I was unprepared and hadn't realised you have to drink A LOT of water the day before on the day and the day after. Also my infusion was run through in 15 mins.
My side effects were horrendous, and I swore I would never have it again. They lasted for about a week or so. However, during the year I could start to feel a difference. I had a multiple vertabral collapse before I took any treatment at all so the improvement was very good.
I was loathe to repeat the infusion, and felt I was between a rock and a hard place. But the advice here and of a phone call to the ROS recommending slowing the infusion to 30 mins, taking painkillers and plenty of water made a difference.
My side effects were a lot less and again the improvement particularly in my back was very noticeable. I had my third infusion in April and suffered very little side effects, just sore bones and a headache for a couple of days.
It seems the first one is always the worst when you read the comments, and from my own experience that seems to be true.
It is three years since my spinal collapse and now the improvement in the strength of my bones is remarkable. I have gained an inch of the four that I had lost, so I am standing a little straighter and yesterday took 20 steps without holding onto my frame or furniture. I did walk like a toddler, arms out for balance and with a wary look, but my husband was so pleased, (as he hovered around me!) and I felt quite proud of myself!
I have been booked in for a fourth infusion next year and depending on the results of the DEXA scan it is likely I will have a "holiday" from it.
I feel my biggest gain, apart from my bone strength of course, is the knowledge that it is over and done with and I don't have to think about it for a year. No injections or tablets to remember, no tummy upsets or other side effects.
My osteoporosis specialist was really unhelpful and demanded to know why I wouldn't take Prolia which she was pushing strongly, completely dismissing the idea of rebound fractures. She was not happy to prescribe the infusion and after the first one I thought I had made a mistake as I was so unwell. But I am glad I went against her and continued to have them because of the difference it has made to my life.
Who would have thought I would be able to walk, (all be it baby steps) when even getting out of a chair was a painful struggle three years ago?
This is of course my own experience, others may feel differently, what suits one person may not be right for another.
Hi I'm trawling through posts on zoledronic infusions to help me decide whether to agree to have them or not. Are you still doing well on the infusions? Thank you
Yes, no problems at all. Followed the tips given here and drank plenty of water the day before and on the day and took paracetamol when I arrived home. I also asked for the infusion to be slowed from 15 mins to 30 mins, which the nurse was happy to do.
My bones feel stronger, I can bend more and I have gained a little height.
My first infusion side effects were horrific and I was unsure about continuing with them.
I looked at the alternatives and decided the infusions were still best for me. I have no regrets.
I don’t know if you’ve had your infusion yet, I’ve only just seen your post but wanted to add my own positive thoughts, for you and anyone else in this position.
I too was terrified of the thought of the infusion but couldn’t take alendronic acid due to stomach problems.
I even stopped reading this forum for a time as everything was so negative.
I had my first infusion in 2020 I was so scared I was having panic attacks while waiting. Because it was Covid times the nurse came to my home, she was lovely and reassuring.
I had no side effects at all. I did drink lots of water, a glass every half hour in the hours before the infusion, plus two paracetamol an hour before and every 4 hours after for a day.
I had my second infusion earlier this year, again no side effects.
What made me decide to go for the infusion was a lovely lady on here who said if she’d had her time again she’d take any medication offered, she’d previously refused any and was suffering terrible spinal fractures.
Good luck, I do hope you have a positive experience. As someone has already said, people rarely report on positive outcomes, normally they come to complain. It’s human nature.
Hi I'm just reading your post from 10 months ago. I trying to weigh up both positive & negative experiences to help me make my decision about having the infusions.
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