At the start of April, my Lupus got really really bad with my skin. I would love some advice, any advice, diet, lifestyle, meds, foods, for how to live through this. I hate waking up now - and need to know it can get better. If I need to move to New Mexico, I'll do it. I just need to know what to do, so I can take the time I need to figure out how to make it happen before this stuff kills me! (No, I'm not kidding - I feel this way sometimes. Like 4-5 times a day.)
I'm going to try to present what happened in order. Please excuse me if the tenses are mixed up - some are copied and pasted from things I wrote as they were happening and are still in present tense.
1. First week of April Journal Entry: It's been going after my skin since last summer, and has been getting better and worse. The last few days, it got really bad - a layer of skin was coming off every time I took off my shirt. OUCH. I've been seeing lots of specialists, and it looks like I need to take something like Thalidomide. This causes birth defects, as many women discovered the hard way back in the 60s and 70s, but can also stop skin Lupus from progressing. What I have now is basically a self-inflicted burn over most of my body - open lesions on my arms, legs, chest, upper stomach, neck, and it's spreading to my face.
Rash started healing very quickly because of steroids, but I was only on them for a week.
2. Second & Third Week of April Journal Entry: I have developed Staph infection in my blood that came through the skin - I also had bulous impetigo in the skin, which the doctors think led to the blood infection. Apparently it can kill me. I have to go on lower dose of steroids for two weeks so that the antibiotic can work.
During this time the burn-like rash is healed, but now with my more typical lupus flare symptoms - high fever, chills, aches & pains.
3. Last week of April Journal Entry: Course of antibiotics is completed, and the Staph infection is gone, and I'm ramped up to a higher dose of steroids once again. Everything seems fine, until I notice the rash creeping in again, right over the old, facing rash. But the new one is different: it's bright red, lots of little tiny dots that are raised and itchy. There are so many of them that they swarm together to cover the skin entirely. Within hours this rash has spread all over my back, chest, arms, neck, and face. I can feel it on my face before I open my eyes in the morning - hot, thick, heavy, itchy.
There have been some medication changes with me a lot in the last month, so what I'm on right now does not match what I was taking two weeks ago, which does not match exactly my signature, or what I was on even three weeks ago. My doctor took me off of the newest one, that I had started right before the new rash showed up - Lisinipril. Now, I take: Medrol 48, Chloroquine 250, Metropolol 100mg, and Losarten Potassium 25mg. I also take percoset, atarax, benadryl, and ambien.
I do have allergies with spring every year, and do live in NYC, where everyone I know is sick with allergies, colds, or flus right now. I just want my skin to be normal-ish again pretty soon. It's even on my neck and behind my ears and my scalp.
I've tried a million topical steroids, and have become wary of how they can encourage my skin to just rip right off, at least when I has all the open lesions (which I don't have now). Has anyone used Fluticasone Propionate Cream 0.05% for their face? My face is just red with a billion little dots all blotching together and spreading everywhere, itchy, but not open sores. I tried the Fluticasone an hour ago, but am going to wash it off because I'm a bit wary. Any thoughts?
Thanks! Sorry my post is too long. I'm too tired to figure out how to edit it down....
Diagnosed: Sjogren's '94, Raynauds 2000, Vasculitis 2002, Lupus SLE 2004, Lupus Nephritis 2007 (Kidneys are healthy now), developing what looks like Discoid at present.
Meds: Cellcept 1000 - 1500 mg, Hydroxy-chloroquine 600 mg, Methylprednisolone 8 mg, Atenolol 50 mg, Enalapril 20 mg. Vitamins/Minerals include: Multi Vitamin, Calcium. Other Supplements include: DHEA, Quercetin, Astragalus