I posted recently that I had been diagnosed with gout in big toe and so came off Acalabrutinib for a week whilst I took the medication.
Before the gout healed, I started with foot pain, quickly followed by hip pain (RHS). After ice packs started to help, then the pain moved to left shoulder and now it is in my RHS hip and this morning back in my foot. It feels to me that I have a little alien in my body that is going around my joints with a hammer and doing as much damage as it possibly can. To be honest the pain is bad and I'm having to get my head around that after 4 years Acalabrutinib is no longer my friend.
I have bloods on Monday followed by hospital call on Wednesday. In the NHS will it be easy to make the switch to another BTKi e.g. Zanubrutinib or do you think they are going to make me suffer and just say - just take paracetamol! My quality of life is in the basement now and basic functioning has become a challenge.
Has anyone got any advice or experiences to share please.
Thanks in advance
Kate