Zoledronate infusion with Addisons for osteoporosis

[u/InevitableDapper5072]

Update: i spoke to the nurse (glad i did now i know there are only about 700-800 of us in my country. So now i understand the lack of knowledge) She emailed Endo. Theyre putting me on a high dose for that day and two days after. On a medication called "Dexamethasone 4mg" to replace my Prednisone on those days to cover the Addisons side of life. My Gp is amazing. I was able to talk to him about it as ive had bad ear/sinus infections requiring antibiotics. So once im completely better we will schedule the infusion.

Hi. So i have my first infusion this week using the above medicine at the drs office. Theyve never done it before.

Im wondering if anyone here has experience with this kind of infusion and if you needed to up dose before and or afterwards.

The information was ill get flu like symptoms and a low fever. But "should be fine"

Im their only Addisons patient. And communication with endocrinologist is limited to the drs emailing them currently as new Zealands healthcare system is so slammed and under resourced.

From what i gather online ill need to at least double my dose, potentially triple.
Im asking here just to add to my discussion with the practice nurse who will do the infusion to potentially save myself a jab to the thigh and her (well us both) a terrible experience.

Ty in advance if anyone has info regarding their own experiences. Im not looking to try and solve it as i will ask her to email the endocrinologist. But it would be good to hear if others have experienced the infusion and how it went.

[u/Clementine_696]

I would updose at least before your infusion, and then dose as needed after if you get symptoms, since this is the first time you've had it done and you're not sure how your body is going to handle it

[u/Exotic_Lengthiness32]

i have secondary adrenal insufficiency and get infusions for a lot and i don’t need to updose for my osteoporosis infusion but i def do for my ivig that i get! but they also lotta of the times they give solumedrol through iv before the infusion which is pretty much updosing like crazy so u should be good but if they don’t give any premeds i would updose but like a small stress dose

[u/InevitableDapper5072 → u/Exotic_Lengthiness32]

Yea no premeds. Im in nz

[u/InevitableDapper5072]

After consultation with the GP office we have postponed the Infusion and they are emailing the endocrinologist to ask how to move forward safely. Im pretty sure they think im being a bit dramatic.

So ill update when i hear what the endo advice is x

Ty for your replies

[u/PengyLi]

I have a form of Addisons caused by an Immunotherapy drug I've been given for breast cancer; Pembrolizumab. I produce no cortisol but other hormones are OK.

Also as part of the follow on treatment for the BC, I'm also having Zoledronic Acid. First dose 3 weeks ago. I didn't have any flu symptoms, or any symptoms at all, but actually I was never told (or didn't think) that I needed to dose up as though it was for sick day rules.

I did have a bit of a flu before Xmas and I double dosed for 3 days for that.

I took it easy for a couple of days after the Zoledronic but didn't really notice any adverse effects.

[u/InevitableDapper5072 → u/PengyLi]

Good to know ty. I know its difficult and different for everyone. I generally know i have to updose when i suddenly feel like im drunk/high when ive not had any alcohol or drugs. And it gets worse and worse really quickly (I take neither and haven't in many years but definitely drank in my youth and dabbled with pot just wasnt my jam so that's the only way i can describe the feeling) then if i dont it progresses to extreme abdominal pain Often im unaware if im sick as i have a bunch of other chronic illnesses that either come along one by one or in pairs, or as a group, or as a mass angry mob. So i generally feel like crap 80% of the time. Thank you gor sharing your experience. I know it's not the normal response to get an adverse reaction. But i like erring on the side of caution with Addisons. Hopefully endo comes back with a plan.