Sally

I have just read your post - thank you. I am now in limbo. I originally had an appointment to see the Rheumy nurse tomorrow but that was cancelled as they thought I should see the Consultant on 8th September to discuss the way forward. I had a phone call yesterday and he is now "unavailable" and would it be o.k. just to see the Rheumy Nurse and she will speak to him on my behalf. I agreed but I am not very good at the moment. I have just had a massive flare, the worst for some while, so any appointment would be welcome.

I have a feeling that the Rituximab will be a no go, so an uncertain road is ahead. It is interesting to read that they persevered with your Rituximab infusions. Although I had excellent care when I was in hospital and had the reaction, they did seem to be short of time and staff and certainly were not geared up to what happened when I had the reaction, so I will be very wary about going back down that road unless they can give me some reassurances that I will be more closely monitored. Everything I have had so far, except the Methotrexate, has given me an allergic reaction. Lefulumonide, Sulphasalazine, Enbrel and Humira have all been tried and stopped so I think I must be quite intolerant. Both my Husband and 15 year old Daughter were with me when I had the reaction, and it deeply affected them, so again, for this reason alone I am going to be more cautious.

I will keep you posted.

Jackie
xx