Hello I’m new on here. I have osteoporosis and an adrenal condition- hypopituitarism for which I take steroids daily. It’s the steroids that have caused the osteoporosis.
In May I had the first infusion and I did everything as advised. I took paracetamol and drank lots of water. As advised I also took extra steroids to ensure my body coped with the infusion. After 10 hours or so I had an adrenal crisis. This is a potentially serious event and I don’t wish it on anyone. My blood pressure was very low and had v fever high so was admitted to hospital. I was told it was the infusion that caused the crisis. After 4 weeks, I am still having side effects from the infusion. I now have inflammation in both eyes apart from other things. It has made me think was it worth it? Because of my bone density (-4.2) I am still thinking about taking some sort of medication again next year. I hope I will not put people off as my condition is quite rare. The reason for writing is to ask if there is anyone else out there with a similar background to me or if they have had an adverse reaction to Zoledronic the first time but have been ok with subsequent infusions.
I am so sorry to hear about the effects that Zoledronic acid infusion had on you.
I have been receiving it for the last 2 years and up to now have not had any side effects, I do hope it stays that way.
I also have Adrenal insufficiency so I have always been concerned about any problems.
I only went to the infusion because my stomach could not cope with the tablets.
Thinking of you
Marian
Hi Marian, thanks for replying. So good to hear you’ve not had any problems with the infusion. I too went for Zoledronic as I have stomach issues.
Your reply gives me hope that perhaps next year might not be as bad. I’m still thinking about going with Zoledronic again as other options also have their own side effects and I don’t want to experience new ones! There’s a while yet to go but I have written to my rheumatologist asking for additional monitoring to ensure I am safe. Fingers crossed..
Take care
Hi @Notanoldie
Wishing you the warmest welcome to our community!
Thank you so much for sharing here, we know it’s not always easy to talk about our health. As you mention, thinking about the next steps can bring up questions and concerns, so we just wanted to warmly welcome you to get in touch with our specialist osteoporosis nurse helpline if you would like to chat through your situation further.
We also wanted to drop in some links to information about zoledronic acid and Hypopituitarism for anyone coming across this post wanting to learn more.
We hope you will keep reaching out here whenever you need - it’s so important not to feel alone on our health journeys.
Wishing you the very best,
Lulu
ROS Moderator
Hi Lulu,
Thank you for your reply and links. I actually spoke at length with a ROS nurse before I posted my ‘experience’ here. She suggested it would be useful for me and others with a background similar to mine. She also very helpfully suggested I write to my rheumatologist and endocrinologist to make clear what I expect next time to ensure safety.
I have been a ROS member for some years now and can’t recommend it enough for the support and advice I’ve received.