[lynnesParticipant]

I had my first infusion of Zometa on May 8th.  I wasn’t warned of immediate side-effects, only that perhaps in a year I would suffer with toothaches and mouth ulcers so must keep mouth meticulously clean and visit dentist regularly.  However, I had to leave work the at lunch time the following day suffering from tremors, high temperature and spent the following two days in bed going from shivering and very cold, numb, bloodless extremities to raging temperatures, soaking sweats.  My limbs and muscles took a few more days to calm down.  Has anyone else had this reaction?  Is there an alternative to Zometa?  I have been scheduled to have it on a monthly basis but am loath to put myself through this on the one week that I am not receiving Velcade injection.

[maggiemayParticipant]

Hi

Sorry you are having trouble with Zometa my husband had flu symptoms after his first couple of infusions, but not to the same extent as you.  I read that if the drug was administered slower it reduced the side effects.  He asked for it to go in slower 15 mins originally to 30 mins and this helped.  You could maybe give it a go.  Maggie

 

 

[lynnesParticipant]

Thanks for your reply Maggie.  I had heard that the infusion time could make a big difference.  Mine was for 15 minutes but actually took a little less time.  I will seek advice next week when I see consultant for the first time since my treatment started.

[davidainsdaleParticipant]

Hi Lynne

I had the same side effects usually known as ` zometa flu’ the first time I had the infusion but it quickly went away and not had any real problems with zometa since then for the next two years, having now completed treatment.

They say that the best advice is to drink plenty before and after the infusion, other than that I always thought that my skin became more sensitive a week afterwards for a couple of days, but it may have been coincidence.

Hope this helps.

David S

[lynnesParticipant]

Thank you for responding David. I think if I ask for a longer infusion time and drink plenty of water all the way through it might be less traumatic. I seriously did not want to have a second infusion knowing how the first affected me.

[susantrParticipant]

Hi Lynne

I have had around 12 zometa infusions and haven’t had any side effects ever.  I have been warned about oral health and the need for regular dental appointments, but never been told about mouth ulcers/toothache – thank you for the additional information.

Sue

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