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antsinthisdance's avatar
antsinthisdance
Member
7 years ago

ONJ...Treament

Has anyone had treatment for ONJ .... (the side effect from Denosumab ,Egeva).? After a CT scan of my jaw, the oral specialist put me on Lyrica. Im on Palbocyclib and Letrozole as well and have found the combo has knocked me off my feet ....I'm a zombie!! Help!!
chemotherapy
side-effects

7 Replies

  • AllyJay's avatar
    AllyJay
    Member
    7 years ago
    Hi there @antsinthisdance...I had the most terrible dizziness with Lyrica, felt as if I'd been on a merry go round at the park, then stepped off. I can't take Endone or Targin Oxycodone or any other of that family of drugs. Also can't take non steroidal antiinflammitories as I'm on warfarin (blood thinner). Also no asprin...same reason. After seeing the pain clinic at my hospital, (large teaching hospital, Sydney) the lovely professor there put me on Temgesic. I'd had major neurosurgery and was in a very bad way. I was on two tablets every six hours initially, and now only take one at night before bed which has helped my multiple joint pain as well. Perhaps ask about it although I know it is a schedule eight drug, even the registered nurse on the ward had to fetch it from the pharmacy, it couldn't be delivered to the ward in the usual way. It has been a heaven sent help for me.
  • antsinthisdance's avatar
    antsinthisdance
    Member
    7 years ago
    Hi Beryl C. Thankyou for your post. Wow you really had a bad reaction to Lyrica. I have dropped the dose and must admit the pain has subsided somewhat. Also, I’m not as spaced out.... it’s amazing what your body gets used to.. however, I’m seeing my onc tomorrow and will be asking when I can hopefully stop taking Lyrica.
     I am very adverse to taking any meds apart from what is absolutely necessary ie at the moment my Palbociclib & letrozole.
    in saying that though.... the jaw pain really was too much to bare ... whatever it takes at the end of the day I guess🤔
  • Beryl_C_'s avatar
    Beryl_C_
    Member
    7 years ago
    I've had on-going pain and stiffness for five years, probably the anti-oestrogen meds and I've tried about ten different drugs, none made any difference. I had a very bad reaction to Lyrica, made me quite high which I hate and I had what I called mental black outs. Not memory loss but actually not knowing or remembering why and how I was getting out of the car at the local shopping centre. Very scary. I only took them for a few days and then phoned the chemist to find out if I could stop taking them, he gave the ok. We are all unique and what works like a charm for one causes untold problems for another. Please let us know you get on.


  • antsinthisdance's avatar
    antsinthisdance
    Member
    7 years ago
    Thank you Arpie, yes, going to try and see onc tomorrow..... re different meds. 
    Best wishes xxxxxx
  • arpie's avatar
    arpie
    Member
    7 years ago
    @antsinthisdance  - Lyrica is quite a strong painkiller - and doesn't suit everybody - it can also become addictive.  

    Maybe have a chat with your GP and Oncologist re your pain control?     A change in pain meds may help you.

    All the best with your ongoing treatment options  xx

  • antsinthisdance's avatar
    antsinthisdance
    Member
    7 years ago
    Thanks Patti J , Ive got those side effects as well. Ive been having egeva injections for 4 years.... stopped them now though due to my jaw. Been on Palbo and letrozole for 6 rounds ... hopefully doing the job!! 
    Best wishes xxxx
  • Patti_J's avatar
    Patti_J
    Member
    7 years ago
    @antsinthisdance. I have been having Xgeva injections for nearly 18 months. Fortunately, I  have not had ONJ. 
    I am now on the same medications as you: Palbociclib and Letrozole. My only side effects so far are hot flushes from the Letrozole and low white cells and neutrophils from the Palbociclib.