Yesterday I went to Guy's, which I thought was for a lupus consultation but which turned out to be the normal rheumatology clinic (although my appointment note said rheumatology/lupus clinic on it). My GP, who is a qualified dermatologist, wanted an opinion from the lupus people on my worsening facial rash. I saw an excellent doctor, who also works at the lupus clinic at the St Thomas site. I have autoimmune hepatitis, and have been diagnosed with lupus/Sjogren's overlap by my local rheumatologist. The doctor at Guy's told me she doesn't think I have lupus, but a generalised autoimmune condition. She sent me for blood tests for just about everything, and gave me a referral to the lupus clinic to see the dermatologists, as she would also like their opinion. This referral is for December.
In the meantime my GP, the qualified dermatologist, has put me on antibiotics for FOUR months, and told me to continue putting the tacrolimus (Protopic ointment) prescribed by the local rheumatologist every other day. My skin continues to worsen, is red, angry and hot, my face is swollen and pricks all over and at night I feel like tearing my skin off. My eyes are permanently red and are becoming swollen. My GP says I have rosacea and "other things", and has also prescribed simple eye ointment for my eyes, to be put in each night. He wants to see me in 2 months.
So, next GP appointment: 2 months. Lupus clinic appointment to see dermatologist: 7 months. Skin: rapidly worsening and extremely uncomfortable. Current diagnosis: apart from autoimmune hepatitis, somewhat uncertain now. Other symptoms which have gone into abeyance since being put on plaquenil: extreme fatigue, dramatic hair loss. Current symptoms: costocondritis (spelling?), worsening facial rash, pain behind one eye and in the temple, general stiffness (could be old age), tingling at ends of fingers off and on and very cold hands most of the time, tingling round my lips, occasional fibrillation, indigestion, sleep disturbance.
Sorry to be so long-winded but I am feeling in limbo at the moment and if anyone has any suggestions as to how to speed up things with my skin problem or if they have the same symptoms and different or same diagnosis I would love to hear from you.