Discussions that mention noritate

Lupus board


Hello there--
I'll just add my two cents. I have been diagnosed by my GP with Systemic Lupus however I am patiently awaiting a visit to a rheumatologist in October. I will have been in flare for five months at that time if this still hasn't lifted.

I have what I believe to be a butterfly or malar rash. My rash too is more of a blush and I thought that unless you knew me before I got it you wouldn't be able to tell but I've been out without makeup and more people notice than I thought including doctors. I have not yet had a rash biopsy which is one way you can know if your rash is due to autoimmunity -- however I may add that my dermatologist is very leary about biopsying my face as it will scar. I am however being treated with noritate cream topically for rosacea (another condition which causes redness over the nose and cheeks) so far I have had no response so I hope that means we're ruling rosacea out as a possibility.
When I first got my rash, it was angry and raised and felt a little burny or sensitive (like I didn't want to put lotion or makeup on my face as it seemed it might irritate it further), then it got scaly even though that's usually an oily area for me. It was like this for two days and when it arrived I also had my first case of joint swelling. Basically if my rash is very visible, my other symptoms like joint pain are a lot worse too. I also find that if I am tired, it comes out more. My rash is sensitive to sunlight but sometimes doesn't really pop out more until the next day or at least for several hours after being in the sun. I find that when my rash is "angry" that showering or bathing really seem to worsen it and the water kind of burns my cheeks and nose. Right now, I seem to have some "blush" over my nose and cheeks (sparing the folds on the sides of the nose) most of the time but have definete periods or times when it worsens or becomes more visible. Mine also gets purple and I haven't heard many other people say that but some people have said that they have a brown discoloration rather than real redness. I don't know what any books have to say about that though.

About your misdiagnosed UC, I'm very sorry for that and like Vee I feel some of your pain. I have IBS (mostly c type) that doesn't respond to anything ie. exercise, more water, more fiber, fiber supplements, aloe vera juice, medication etc.. etc... You name it, I've tried it and it didn't help me. I can't even seem to find any food triggers and especially don't notice stress triggers or emotional triggers which a lot of people w/ IBS have. Actually my symptoms seem a lot more like UC or Crohns when I got researching and it was my GI problems which brought me in to see my doctor. I too had a colonoscopy and there was no inflammation, however when I took prednisone to help bring me out of flare, I was regular for the first time in at least four years! I'm finding that IBS (if that's what it really is) is a very common thread to people with autoimmune conditions and even just immune conditions (such as fibromyalgia and chronic fatigue). Were you diagnosed with Ulcerative Colitis w/o a colonoscopy to begin with?? If so, silly doctors and I understand that too as I had a doc put me on a huge dose of thyroid meds once without ever taking a sample of blood, ended up w/ thyroiditis.
As far as the family inheritance of lupus and such diseases... I'm in agreement with Vee. But I would just add that I have been asked by any doctor (that would be four doctors in all) I see who knows about my set of symptoms and possible diagnosis of lupus---they all ask if I have a family member with it. I'm also finding though that as far as autoimmune diseases go, I don't really think there are a lot of doctors out there who really know much of anything about them.
My very best of luck to you!! I hope this was helpful and not too long. I do feel where you're coming from and I hope you get the help you need as soon as possible. Please let us know how you are doing!
Love,
Shawnee