Firstly, to address Rob's mention of thread rules, I read through them and I'm not quite sure how what I said actually impinged on them. I in no way suggested that I believe I have a cure for Lupus, nor did I or would I encourage anyone to take an approach that is not medically recommended - I simply stated that the current treatments we have are still not wonderful (for instance, Predisone doesn't sound like an ideal treatment, but unfortunately that's all we have) and I'm a little worried about the side effects of certain medications, which seems like a perfectly fine comment to make. In response to the vitamin comments, I actually asked my rheumy about this at my appointment and he said they "certainly wont hurt" and encouraged my use of vitamin D, B, C, hair/skin/nails formula and omega 3 tablets. Once again, this is simply advice that my doctor gave me personally, and I'm not here telling you that is what you personally must embark on.
I had my first appointment last week with the rheumatologist/dermatologist. He didn't seem to even see rosacea as an option regarding my rash - it wasn't mentioned at all. Despite auto immune diseases being notoriously difficult to get a diagnosis for, I left the appointment with a current diagnosis of SLE/Lupus. Although that seems very quick, I was extremely impressed with him and in no way think he is being irrational or making a decision based on sketchy evidence - he was very thorough and I'm sure he must be quite certain for him to have given a diagnosis so early on. He says I currently fit into the mild category, and that most Lupus patients he will see in his lifetime are also considered mild, so that was comforting. He ordered another set of bloodtests in a different lab, to check that the results weren't to do with calibration inaccuracies. He says he will be starting me on Planquenil for the pain and the rash, which I was pleased with because it has so little side effects. He says my nails are slightly pitted, and he checked for signs of hair loss etc. All in all I was rather happy with the appointment. He asked me to keep a day to day journal of symptoms, which I've started doing.
At the moment the pleurisy-like feelings in my lungs are starting to get more uncomfortable, and the fatigue is quite extreme. My knees are almost numb from pain. My rash is actually ok, but perhaps I'm just getting used to it. I've been having some brain fog moments, making silly mistakes or forgetting things more easily which is strange. The thing I'm currently most worried about is that my scalp has been burning slightly - every now and then I get this burning sensation in a spot, or it'll be on one side of my head, and it will go away. It's quite mild, almost unnoticeable. I think my eyebrows have been thinning slightly, but I can't tell if that's purely because I'm more alert due to this diagnosis of changes, that might not actually be happening. My eyebrows have been feeling slightly itchy, but I mean ever so slightly and they aren't red or noticeably irritated. I have very thick hair naturally so I'm not even sure if I would notice hair loss or the onset of it. I've also been getting more freckles on my face, quite a few have popped up in a small space of time. I don't know if any of these tingling symptoms or freckles are something to worry about, or me just being paranoid.
Also, does anyone know if it is a certainty that you have systemic sclerosis or scleroderma if your pattern is nucleolar? I've read that this is the case, yet my pattern is nucleolar and I have none of the symptoms. My ss-b was positive as well as my ANA and I had a slightly elevated level of infection, and the prospect of scleroderma or sclerosis have not been mentioned to me at all. I'm guessing then that neither my GP or rheumy see this as the case, but the statistics I've read seem confusing.