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Help please with Zometa infusion side effects beyond 48 hours

prunie
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Hi 

I had my first Zometa infusion on 28 March this year, I had the usual 48 hour side effects but then my arm & hand were swollen and sore, they still are. My oncologist on sight of me said I had rheumatoid arthritis even though up until the day of my infusion I had never had any symptoms was fit, doing exercise despite the effects of Letrozole tablets. I was told to take a break from the Letrezole medication which I did on 16 May 2022.

I have since seen a rheumatologis who has confirmed I don't have RA but he has seen other patients who have experienced similar symptoms as a result of the Zometa fusion leaking into the body although never as long lasting as mine.  My breast surgeon said he had also seen other patients in my situation but my oncologist denies ever having seen the reaction I have had.

Has anyone else ever flagged up similar reaction as me and also I still have some of the side effects of Letrozole mainly the muscle joint and bone pain in my legs - how long does it take for this drug to get out of my system?

thank you and if this is not the right forum for this question please let me know where I should go.

  • Hi prunie,

    Thanks for getting in touch and welcome to the Macmillan Online Community.  I’m Kelly, one of the cancer information nurses at the Macmillan Support line.

    We’re sorry to read that you are still struggling with side effects.   Especially as your doctors such as the rheumatologist have been unable to confirm why you have been affected for so long.

    Letrozole has been known to cause problems with bone and joint pain which is why this was stopped  to see if these symptoms improved.

    Unfortunately, I have been unable to find specific research looking at reported long term swelling symptoms when taking Zometa.  It is possible to get redness and swelling at the infusion site but this is estimated to happen to less than 1% of people having this.

    I did find some information from an American peer (doctor) reviewed journal trying to understand more about long term side effects of bisphosphonates.  However this was predominantly focused on potential  muscular and joint pain and there wasn’t mention of developing the type of swelling you mention.

    There has also been reports about how some people can  experience what is known as  acute phase reactions (APR) or post dose symptoms (See section 4.4. and 4.8).  This is where someone has an inflammatory effect to a drug. However, this is still not a common long-term effect.

    We’d encourage you to get back in touch with your Rheumatologist and Oncologist.  Maybe asking if they think there could be some connection to the findings in the information above to rule these out.  They are best placed to support with your questions as they are directly involved with your care. This includes about how long the drugs you have had  would take to leave your system as  this may be different for each person.

    If there was any concern healthcare professionals are also asked to report any suspected adverse reactions via what is called the Yellow Card Scheme through the Medicines and Healthcare products Regulatory Agency (MHRA).

     Getting in touch with the pharmaceutical company who manufactured the brand of Zometa you had may be another approach. They may be able to advise more specifically from their evidence if there has been other reported side effects of swelling and pain when taking the drug. Your oncologist or hospital pharmacist who has access to your medical information could find out who the manufacturer is for you.

    I can see that you have also joined our breast cancer group on the community.  This could be a place to share your concerns to understand if other people have had similar experiences.

    I hope this information helps.  If you want further information or support, then please don’t hesitate to get back in touch.

    Best wishes,

    Kelly

    Cancer Information Nurse Specialist

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref: KA/AM

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