Apologies in advance for the long and rambling post.
Haven't been feeling great lately and had an appt today at the hospital.
For me one of my problems is rashes and tiredness - seem to go hand in hand and was diagnosed 2 years ago with sub cutaneous lupus with some systemic threads ( also raynaulds, hypermobility as well)
Rash has always been a problem and came to a head last summer when GP put me on a course of oral steroids as I was covered in it and was literally using a tube of sream every application. I have constant flat malar rash on face and neck, with larger lesions on back, shpoulders neck and chest. The result was instant and lesions disppeared after a five day (20mg per day course) also felt so much better in myself. Rash soon came back and this continued until November when the hospital tried me on azathiprine. Unfortunatley could not tolerate this and made me very sick. To cut a ling story short have been on steroids ( varying tapering doses) since January. Am not down to 10mg per day ( tapering by 1 mg per week) and boy is my body feeling the effects of it. For the first time in about 8 months my rash is back with a vengence and I feel so ill also. I am also haviong trouble getting on top onjoint/muscle pain and have got swelling around the cheek bone area and shoulders and chest.
I was feeling quite happy thay rash etc was flaring ( so I thought) today when I was at the hospital so they could see it. BUT no, because I had no lupus markers in bloods in Feb, they insinuated I have not got lupus.
I did point put that in Feb at my appt then, they mentioned about positive lupus markers then, but this was ignored. The doctor kept telling me that the rash was caused by steroids. Mentioned dry mouth which is giving me problems, but just said no ulcers, no problems. Said no joint involvemene, but when he examined me and I winced at pain in knee and elbow asked me did he hurt me!!
To top it off asked me 4 times to do a urine sample - each time I replied that the nurse already had it. I really felt that he was not liste3ning to me at all and had a tick list of symptoms and because I have no joint swelling ( got obvious pain though), no mouth ulcers (but very sore roof of mouth, gums and dry mouth)
After querying Lupus, he then advised of new meds to try and that he would ring this afternoon - no phone call as of yet. I wish I had have asked him if it is not Lupus, what are you going to do to try and find out what is wrong with me then.
Did not even do any bloods today. When the last lot of bloods were done at beg of Feb, I was literally flying then no rash, loads of energy, pain controlled etc, so was not surprise that there were no markers.
What do anyone think I should do now? I am tempted to try and find a new consultant ( maybe one who is sympathetic to sero negative bloods) By the way my original diagnosis was made by a dermatologist.
Sorry for the long and whinging post.