Hello gorgeous people,
7th week off work.. I have cried and cried this morning in desperation as I just want a little bit of independence back. Can’t drive, feel too poorly to go anywhere or do anything..
Anyway my consultant has agreed for me to stop the Toci I think!!! The nurse I saw on Friday is absolutely rubbish, she has given me wrong med education, wrong dose of drugs and never does what she promises so I’m sitting with bated breath. I saw her in a right state on Friday.. I can’t move my head, my neck and shoulders are in so much pain and the headaches are so debilitating so I presented her with a diary (thank you Biofreak) and broke down.. off she went to consultant who said Baricitinib if I’m seronegatve (I am!) but she couldn’t find it on the system so had my RF tested again!
I called yesterday to cancel tomorrow’s Toci infusion as I thought someone else could use the appointment and they told me that all she had put was continue with Toci on the system!!!!!! What the hell... she is beyond useless!!! I shouted and screamed but obviously they need confirmation from consultant so I’m hoping and praying that someone does their job!!
I’m feeling pretty frustrated and down and just need to know some good experiences of Baricitinib to give me some hope... this lovely nurse told me that if this doesn’t work it’s the end of the road and there’s nothing else they can do!!! 😩😩😩