I thought I'd update you on the latest stage in my attempt to introduce some reason into the withdrawal of treatment proposed by my rheumy at the beginning of October. I am quite stable on methotrexate in tablet form (yuk) and infliximab infusions. Following my queries about a face rash in the sun, she told me she thought I had drug induced lupus and that I was probably in remission so was going to withdraw all my RA meds. I begged for a stay of execution, as I was in turmoil following my father's death the day before. So the first time I wont have the anti-tnf will be in mid-January. Then after seeing her clinic letter to my GP I wrote her a list of questions and she agreed to allow me to continue with methotrexate.
In the meantime I made a private appointment to see a dermatologist who referred me to the wonderful NHS photobiology unit at Ninewells in Dundee. They were quite sure that I dont have lupus – and that the problem is a reaction to the perfume in skin / sun creams. This is really important because if it had been lupus it would have excluded a lot of the anti-tnf treatments.
Anyway I have been offered an appointment with the rheumy nurse at the beginning of January, but not as my GP requested, with the consultant. So I went to see my lovely GP this morning who agreed with me that I have lost trust with my present consultant and is going to write to ask if I can see someone else – and that my anti-tnf treatment continue until we can work out a clear way forward.
I have had a lot of encouragement from people on this forum – thankyou – and also a really helpful set of suggestions and clarifications from NRAS. I don’t like going private, but I think that this was money well spent, as this particular rheumy was not really prepared to listen to me and just sent out defensive letters. I’ve been given the name of a particular consultant in the same department who has a very good reputation and my GP is going to ask if I can be transferred to her. Rather a delicate operation – but with supportive GPs I seem to have made some headway. I just thought this might interest you – but also suggest ways of challenging diagnoses you aren’t happy with.