Hi, I have a rash - a VERY itchy, painful, raw, stinging, burning rash. I've got it above my right eye (inner side) under it and - without any visible signs - on my cheekbones and under my chin and on my collar bone. I am concerned that though this rash FEELS like Rosacea it is actually Lupus. And although half of it is not visible I feel it covers my cheeks and eye area and is just waiting to manifest itself.
A little history. I injured my back badly in May 2018, an idiot Dr gave me Voltarol, although I'd told her I was sensitive to NSAIDS, assuring me it wouldn't 'hurt my stomach'. I had a severe drug reaction (very bad urticaria in both ankles - I used to suffer from sunlight induced urticaria every year until I accidentally 'cured' it with antihistamines) and was given Prednisolone, a 5 day course. Second day of using, I got a big red balloon face which was with me for the duration and a few days after. It then reappeared 3 weeks later and although the redness went away the stinging and itching and pain in the areas listed above never has.
Other side of that coin - the steroids made me feel GREAT. Not an exaggeration. I felt human for the first time since I was in my 30s (I am now 62). All my (extensive) aches and pains went away, particularly in my muscles, and I lost my tiredness and breathlessness. However, there was the 'Rosacea'..
Now, more than a year later, I have developed this 'rash', which is really just a red discoloured area, going brown as it gets worse, with thickened skin and a little scaliness. It is not spotty or acne-like. I also had a teeny spot on my nipple. I gave in eventually, after trying every cream on the market, and used Hydrocortisone 0.5% on it. First time, for 7 days (2 days longer than you're supposed to use it!) and I got good results but it never felt truly healed. Sure enough, 10 days later it came back. I used it again, this time for 10 days, but only a week later it was all back (but not the nipple, yet).
I have always felt that my positive reaction with steroids was a kind of red flag, but I've never known if everyone feels really great on steroids. But my muscular, and to a lesser extent joint, pain, is really bad, and I can't seem to get it to ease up. I've started walking every day, even when exhausted. I've been doing it about 3 weeks now and not really seeing any results from it.
My exhaustion is erratic; some days it's an effort to do anything at all, others I feel less tired, but unfortunately they are much rarer. I have pain in ALL the muscles of my back, top to tail, and it aches just to bend my head to write or wash up. I am only really comfortable sitting with my back propped up. I have bad breathlessness, which I hoped exercise would improve but sometimes it is so heavy-going climbing a hill I feel like I need to stop to breathe. It makes my head pound and makes me light-headed. It also hurts my back! I’ve been fit, and less fit, over the years and I know I’m more sedentary than I should be now, but this just doesn’t seem to respond to exercise. In fact, I often feel worse after it rather than better.
Very long story short, I wonder if this rash is actually a malar rash and the severe muscle pain, and my reaction to steroids, might indicate lupus, rather than Rosacea. The only meds I take are Omeprazole and B12 injections. I've stopped the Omeprazole as I've been taking it a long time and thought this may be drug-induced lupus. I've had that before, on Anti-convulsants, but then I just had an erythema multiforme rash on my legs, nothing on my face.
I also have swollen lymph nodes in my neck and a sore-ish throat and it hurts to swallow quite often.
If anybody has any opinions or insights to offer, or wants to know anything else re my symptoms I'd be hugely grateful to hear from you. I have a Dr's appt for a month’s time (soonest I could get!) but I'd like to go to him with some idea of what might be wrong.
Also, one last thing, I'd like advice on whether it's safe to use the steroid cream on my eyes again while I'm waiting to see him. I feel concerned that it might be dangerous long-term and I may make this worse. If I DO have Rosacea then you're not supposed to use steroid cream because it can make it worse. The last thing I need is to make this face full of needles worse. Incidentally, I have a problem with flushing and have done for about 15 year plus. At first it was paut down to the menopause, but for many years now I’ve felt it was something different.
Many thanks for any help, and my apologies for the epic length of this!
P.S. I’ve had many potential triggers – a divorce after 40 years marriage, isolation (I have no friends or family), the severe back injury followed by UTI infections that wouldn’t clear, several courses of antibiotics, the drug reactions, steroids – the list is seemingly endless!
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