Is anyone having problems with Demosumab…Last weel I had my 6th injection and for the second time I had breathlessness and a sore tongue ( like pins and needles) has anyone else sufferd these prolems



Hi Suze I have been on Demosumab 2 yrs now and I must say I have not had any side effects others I know are the same no side effects other meds have given me side effects are you sure it is the Demosumab giving you these irritating se hope you don’t suffer too much x

Hi suze. I have been on denusomab for 15 months an I have had sore bones and flu like symptoms, but not breathlessness. I have also had tingling lips although I don’t know which drug cause what and my consultant said she’d never heard of anyone having tingly lips. My team seem to expect side effects. Hope you keep well. Mu.

Hi,Suze,I do get breathlessness with Denusomab.
If you look on the Cancer research UK web site they list breathlessness as top side effect!
Hugs,Helen xx

Just seen Onc this morning and he has stopped the Denosumab and in 3 weeks I will start on Zometa. I assume there will be side effects ( why wouldn’t there be ) LOL. But I am not prepared to put up with breathlessness and sore tongue for two and a half weeks!!! Soooo we shall see …watch this space. Are anyone of you ladies  on Zometa, if so any comments would be welcome (I think) haha.


Hope everyone has a good weekend we are off to the East Coast for 1 week and can’t wait wahoo!!!


Sue xx