This is a query for one of my support group members. She has given me permission to post this, as we can’t solve her situation ourselves.
So she has lupus and Sjögren’s etc.
History of miscarriages and strokes. Very bad headaches. Etc.
She has increasingly felt that her methotrexate isn’t working and her lupus isn’t under control.
She is suffering very badly from lupus related arthritis, all joints and hips especially and only has paracetamol to use, which isn’t cutting it.
It’s difficult because she has a reaction to Hydroxychloroquine and cannot take that.
So anyway, Rheumatologist actually agreed she needed more help and she was feeling positive and hopeful. She was told she needed a lot of bloods done and if everything was OK she would be given Rituximab infusion. She was delighted.
She then got a letter saying that all her the bloods were fine BUT Rituximab wasn’t licensed for lupus treatment and they would have to apply for funding.
She was VERY upset and telephoned the rheumatology nurse. She was told that she wasn’t even sure my ladies Rheumatologist was going to apply for the funding! It wasn’t to be taken for granted that the Consultant that would apply.
More dismay and disappointment.
None of this had been explained to her before. She was simply told if she passed the bloods she would get the infusion.
Today, she hadn’t heard back from the Consultant - a telephone call was promised from the Consultant.
She had been told lots of staff on holiday but rheumatology nurse says they won’t be applying for funding for Rituximab and she will be tried on MMF instead.
Needless to say my lady is upset and feeling deeply let down. Why tell her what they did and do for the bloods for Rituximab if they didn’t intend to follow it through?
Is Rituximab licensed for the treatment of lupus? Has anyone else faced these issues?
I’ll be on again soon as I have another query.