[Anonymous]

Dear all here I am once again asking for your expertise. My husband has had a very rocky time since his diagnosis in July 2020. He was admitted to hospital on 17th December acutely unwell. He is still in hospital. He seemed to be gradually improving but on 29th he was given his monthly Zometa and within two hours was screaming with pain in his lower back, groin and thighs. This pain was on a par with when he fractured his sternum. MRI didn’t show anything new. I have been reading about acute reactions to Zometa and I suspect this may be the cause. His consultant doesn’t think it is likely. All the info I’ve read ( on smartpatient site) references exactly the symptoms that Lee had and suggests giving infusion very slowly, drinking lots of fluids during infusion and taking painkillers before procedure. Have any of you ever experienced similar issues? And, how did you proceed with subsequent infusions? Understandably he is very fearful of this happening again as the pain was the worst he has ever experienced.
As always I shall thank you in advance for any advice you can offer.
May 2021 be a better one for all of you x

[kevinParticipant]

Hello Clare

Sorry to hear this about your husband. When I was diagnosed back in 2006 I was put on bonfos which was a daily capsule. I was on this for several years. When I last relapsed in 2018 along with my treatment I was put on a monthly infusion of zometa. This was for about 2 years. Now my treatment has finished I have been having an infusion every 3 months. This involves an infusion of fluids followed by the zometa taking about 20 minutes and then another infusion of fluids. I have not noticed any side effects at all. However, I am not sure but I think I might have been told that I might notice some side effects initially which should wear off. I might have remembered this incorrectly but might be worth asking if this is the case.
Best wishes and Happy New Year
Kevin

[Anonymous]

It does seem bizarre. His first Zometa infusion gave him significant flu like symptoms and I was told these would lessen with each treatment. And, he was ok with the next two. I just can’t think what else it could be and reading the American sites many people make reference to it ( I had been totally unaware of these specific symptoms ). I suppose we may never know! This wretched disease is full of surprises. We were both shocked to be told of the dramatic reduction in his light chains yesterday so this was a very pleasant surprise. We hold onto the positives and hope he continues to improve. I hope you are doing well. 😊

[kevinParticipant]

Hello Clare

Yes thank you doing ok in full remission since last treatment finished. I forgot to mention that I am also on a daily Adcal tablet which runs alongside my zometa treatment so don’t know if this might be relevant.
Best wishes
Kevin

[Author]

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