IV infusion

[Madmax100]

Hi all, I’ve got an appointment for the IV infusion (zolendronic acid) on Friday 13th August as the oral AA wasn’t getting absorbed by my body as well as it should be (I’m coeliac).

However my best friend is getting married on Saturday 14th and I’m her maid of honour. I’m really loathe to cancel my appointment as I’ve been waiting absolutely ages but I’m very worried about any potential side effects…

Can anyone who has had the infusion let me know how they’ve found it? Obviously I realise it’s different for everyone!

Thanks

[Portobello]

Was dreading mine in March! No side effects. Drink plenty of water before and after. 😊

[Madmax100 in reply to Portobello]

That’s great 😃 I’ve got it next Monday - feeling really nervous

[t1gernidster]

There could be a reason the AA wasn’t being absorbed -have you been tested for hyperparathyroidism? If one or more of your parathyroid glands has gone ‘rogue’ then no medication will help your bones until it/they are removed. A simple blood test to ascertain if there is raised calcium in your blood will tell your GP. I’m sure you have already read up on the possible side effects of the zolendronate infusion just to be aware.

Take care and good luck.

[bluebell99 in reply to t1gernidster]

Hi Madmax100 I would not like to frighten you or put you off but I had an extremely bad reaction to the infusion.

Within twelve hours I was vomiting, hallucinating, incontinent, headache and joint pains, fatigue and was generally unwell for a week. A full blood test two days after the infusion showed serious effects on renal and full bloods, liver etc. I had a lack of calcium which confused me as I thought the infusion was supposed to add calcium not strip i

I think if I had been prepared for the possibility of being ill and my husband was less stressed, we might have been able to cope better. He rang the sister at the clinic and she told him to ring 111 and get me admitted to hospital. I did not know that at the time as I was on another planet!

He would not ring 111 as he thought if I went off in the ambulance it may be the last time he saw me as this was back in March at the height of the Covid infections. Bless him, he was extremely worried about me.

The blood tests were not looked at because it was the weekend but my GP rang me Monday night, told me to pack an overnight bag and said she had called an ambulance for me. This completely came out of the blue but I learnt later the level of calcium was so low I was at risk of heart problems. Fortunately after several heart monitors and calcium checks I was sent home hours later, unwell but getting better.This may not happen to you as everyone is different and medications have different side effects.

Anyway full renal, liver, bone etc blood tests about a fortnight later showed bloods back to normal, but the experience has made me think twice about repeating it.

However, because this is such an important occasion for you, I think I would delay it and get the next available appointment.

Sorry if it is not what you want to hear.

Good luck.

[Madmax100 in reply to bluebell99]

Good grief, that sounds absolutely horrendous! ☹️ Sorry you had to go through that. That has scared me a lot. I hope you’re ok now? With no long lasting effects? I know it’s rare to experience what you did but I think it’ll be the waiting afterwards that will worry me the most. I delayed my appointment to Monday 13th so fingers crossed. I work Tuesday and Wednesday so I’m hoping I don’t have to take any time off so here’s hoping!

[bluebell99 in reply to Madmax100]

Good luck with your infusion, not everyone has side effects so fingers crossed you will sail through it. It may be wise to prepare with diarolyte and painkillers in the cupboard though, just in case.

How was the wedding? I think you were sensible to delay the infusion, at least you could enjoy it fully.

Good luck!

[Madmax100 in reply to bluebell99]

Good thinking 😊 it was great thanks, just the thought of feeling crap would have ruined the day so I’m pleased I delayed it. Thank you!

[bluebell99 in reply to t1gernidster]

Sorry I replied to you instead of Madmax100, blame it on the weather!

[t1gernidster in reply to bluebell99]

No problem bluebell99! It’s something I am very interested in anyway. I am sorry to hear you had such a terrible reaction to the infusion. It certainly hasn’t made me change my mind and decided to have it!

[Madmax100 in reply to t1gernidster]

I have coeliac disease so think it’s because of that as my bloods have come back normal. Thank you

[Berniz]

3 years ago, after my first infusion, I had gastrointestinal iproblems. The rheumatologist thought my symptoms were not caused by the infusion. The infusion was the only variable. To this day, I continue haveing G.I. symptoms. Plus, I wanted to get Invisalyn braces and my dentist refused as there is a chance of necrosis ot he jaw from Reclast.

[Madmax100 in reply to Berniz]

Ouch - sounds grim ☹️ Since I started AA I struggle a little with GI symptoms but nothing else really, except itching which can be really annoying! I’ll come off it to have the infusion so I’m really hoping I’ll be absolutely fine.