I know it seems very confussing, trust me it is for me also. Ok I had this rash on my face that would come and go every couple of months for like the last 15 yrs. All the Docs I seen about just said oh its nothing and would give me a cream for the itching which never helped. Finally the GP I now see (yrs later) seen it and thought it was something and sent me to the dermie. HE looked at it and said It looks like Tumid Lupus. He wanted to make 100% sure of this so he did the deep punch test. ie biopsy..this came back 100% positive Tumid Lupus. He also sent me for the reg Blood testing. 8 tubes of blood drawn. I did this the same exact day..now these came back looking good. After discussing all my symptons which are covered on the sticky posts, he determined I am 100% Tumid Lupus and Borderline Systemic. Now since he is only a dermie he would not treat for anything but the Rash. So I went and seen my GP who then sent me to a Rhumie. This Rhumie looked at the Blood test results not the Punch test results. He said "nothing I can Do" and cant recheck your blood cause it was only done this yr. So Back to the GP, who did a thyrois test and that came back as hypothyroidism, he also treats me for fibromyalgia, which I have all the sytmptons for also, along with a long history of other issues medically. I hope this helps clear your confussion. I did do more research on the Tumid and have read where 1 out of every 15 ppl with TLE also already have or will get SLE. I really wish there was an expert in this field that I could speak with.
Teeha, got 'ya. Talk about being between a rock and a hard place! If a systemic med (like Plaquenil, for one) could help you more than this skin-only treatment, it's a crying shame that neither your dermie nor rheumie will consider prescribing such a med!
All I can think to suggest is to try another rheumie, hopefully one who sees all your symptoms in the context of lupus, instead of seeing just your rashes. Hugs, Vee
P.S. If it's of any comfort (?!), it took me years of full-blown rashes, plus other ongoing worse problems, to get a Dx and treatment. I had to keep pressing & to switch drs. Finally went to a big-city rheumie who took all of a few seconds to guess that I'm in a so-called "subset" (for me, it's SCLE), and to order up new tests. I believe most of my drs. looked ONLY for discoid or SLE: they didn't seem to know a darned thing about the other "variants".
Veej, The dermie did prescribe Plaquenil. I took it for I think 1 week and broke out in a all over body rash from it. So it goes on the list of Meds I can not take.LOL I have along list since I am so hyperseneitive to most meds.
When I first started reading about Tumid Lupus it did say it is a rare form of Lupus. What I am going to post is direct from a website that goes into more detail about it. I do have this site saved incase we can get the link posted..I just dont know how to go about that. I know this info would be helpful to others who deal with this.
Tumid lupus erythematosus is a cutaneous disorder that has been described in the literature mainly as case reports. Until recently, it was often not possible to differentiate tumid lupus erythematosus from other disorders with similar clinically and histopathologic presentations, such as polymorphous light eruption, lymphocytic infiltrate of Jessner and Kanof , pseudolymphoma, and deep gyrate erythema.
A study performed in the Connective-Tissue Section at the Charles C. Harris Skin and Cancer Pavilion using immunohistochemical markers on fresh-frozen skin biopsy specimens now allows us to better distinguish between these disorders. Fifteen patients were prospectively followed over a 14-year period. Smooth, indurated, pink-to-violaceous papules, plaques, or nodules were present on sun-exposed sites for a mean duration of 2.5 years (range two weeks to nine years). The histopathologic changes showed a moderately dense, superficial and deep, perivascular, and occasionally periadnexal infiltrate of lymphocytes. Characteristically, there was an absence of dermoepidermal junctional involvement, although focal changes were observed in a minority of cases. Mucin deposition was demonstrated throughout the papillary and reticular dermis.
Immunohistochemical analysis demonstrated that the infiltrate was comprised predominantly of CD3-positive and CD4-positive lymphocytes whereas a minority were CD8-positive. The ratio of CD4 to CD8 cells was roughly 3:1. In contrast, polymorphous light eruption and lymphocytic infiltrate are characterized by CD8-predominant infiltrates. Thus, in distinguishing between these commonly confused entities, immunohistochemical markers provide important diagnostic information. Based on the results of this study, comprehensive criteria are now available for making the diagnosis of tumid lupus erythematosus. One of the fifteen patients developed systemic lupus erythematosus, which emphasizes the importance of accurate diagnosis, wrokup management.
Willemze R, et al. Immunohistochemical studies in lymphocytic infiltration of the skin (Jessner) and discoid lupus erythematosus. J Amer Acad Dermatol 11:832, 1984
Konttinen, YT, et al. A long-term clinicopathologic survey of patients with Jessner's lymphocytic infiltrate of the skin. J Invest Dermatol 89:205, 1987
Rijlaarsdam JU, et al. Characterization of the dermal infiltrates in Jessner's lymphocytic infiltrate of the skin, polymorphous light eruption and cutaneous lupus erythematosus: differential diagnostic and pathogenic aspects. J Cutan Pathol 17:2, 1990
Akasu R, et al. Lymphocyte markers on formalin-fixed tissue in Jessner's lymphocytic infiltrate and lupus erythematosus. J Cutan Pathol 19:59, 1992
Dekle CI, et al. Lupus tumidus. J Am Acad Dermatol 41:250, 1999
Kuhn A, et al. Lupus erythematosus tumidus: a neglected subset of cutaneous lupus erythematosus: report of 40 cases. Arch Dermatol 136:1033, 2000.
2001 Dermatology Online Journal