Zometa side effects

I was told only about the incidence of necrosis of the jaw which can affect 1 in 100 people.  Originally I was given a 28% better survival rate with this but which eventually reduced to 2-3% which I was not informed about until after the treatment.  The treatment was horrendous in my case (I suffer from ME) and I cannot therefore recommend it but it may not be everyone's experience.  My hands, arms and shoulders were in so much pain and I could barely get out of bed and downstairs.  This went on for some considerable time and I was referred for bone scans etc.  Zometa stays in the system for a very long time I was told by my dentist.  I now have a tooth which will probably need to come out but I will need to attend hospital for this procedure.  I was given steroids when the GP thought I might have Polymyalgia Rheumatica which helped considerably but since this diagnosis wasn't proven after blood tests I was taken off the steroids which means I returned to the former state.  I have now had steroid injections in both shoulders which has helped immensely but my GP will not let me have them indefinitely. 

I have reported this treatment through the Yellow Card system to the Medicines and Health Regulatory Authority.  I looked up the side effects of which I found 10 pages which I was not informed about so I would recommend researching it and maybe talk to others who might have been on it for a while before entering into it.  I have since heard numerous stories on the dental side of problems with it but for me it is the ongoing pain and weakness which is troubling although better than last year.  I had one treatment only in December 2018.  Good luck with whatever you decide to do.

Hi Elliej

Thanks for taking the time to reply to my post and I'm so sorry you've experienced such awful side effects.

I was diagnosed with m.e 6 years and fibromyalgia 3 yrs ago. Do you think that we suffer more side effects due to these conditions?  My Oncologist seemed very surprised that I'm still suffering from numb feet- I finished taxol at the end of July.

It's so bad that you were told a 28% better survival rate which was then drastically reduced. I've been told 2% which is why I've been looking in depth at potential side effects.

Thanks again your reply has been very helpful to me. Good luck and best wishes to you.

I hope you found it helpful.   I have had ME for 30 years which is not without its own problems with medications, chemicals, etc.  The medics to be fair on the whole are very conscious of the problems encountered by this community, at least where I live.  I had to stop chemo and opted for a mastectomy because of side effects.  I was not offered Radiotherapy, despite having had cancer twice.  Some people just have to weigh up the risks of having treatment against not having it and I use an integrated approach.  Good luck with everything you opt for and have a good recovery.

Thanks again elliej for your help.

All the best to you too for a good recovery.