I was told I had tumid lupus/lupus profundus by a dermatologist a little over a month ago for two spots (both of which he took a biopsy of) on my upper arm. He sent me for more bloodwork which came back weakly positive ANA and Anti-Ro. He sent me to a rheumy who I've seen twice now. He also sent me for more bloodwork which came back smiliar to the first tests weakly positive ANA and Anti-Ro. He said at this point I do not meet the criteria for a diagnosis of SLE. My dermatologist put me on plaquenil 200mg once a day. I've been trying to find information on the use of plaquenil to treat tumid lupus and have not had much success. From what I've read this is a pretty serious medication and I'm just not sure it's something I should be taking at this point. I have/am not experiencing any other symptoms. If anyone has any information regarding my situation it would be greatly appreciated. Thanks!
Re: Need Advice
I have been on Plaquenil for about 10 months and an anti-inflamatory Feldene. The Plaquenil has helped me so much. It took about 4 or 5 months before I really felt that it was helping me. I still have my days, especially if I am stressed. I take 200mg Plaquenil with breakfast and 200mg with supper, I have had no side effects. There are a lot of us out there on Plaquenil!!
Re: Need Advice
Thanks for your response! From what I have read on here it sounds like most people are experiencing a lot of success with the plaquenil. I guess I'm just wondering if its necessary since I do not have any other symptoms and have not been given a diagnosis of SLE. Can I ask what your symptoms were prior to taking the plaquenil?
Re: Need Advice
Jena, I was Dx'ed with the SCLE "subset" of SLE in summer 2000. I'd had years of trouble, such as headaches, joint pain and swelling, elevated sed rate, anemia, GI & urinary problems, fatigue, low-grade fever, hair loss, severe photosensitivity, mild neuro-like signs, etc. My rashes were on my upper arms and torso and looked, in their mature form, like perfect circles, then expanded outwards and faded WITHOUT scarring or depigmenting.
My anti-Ro finally turned positive, but my ANA stayed negative. My rheumie & dermatopathologist both told me ANA stays negative in maybe 1/3 or so of SCLE cases, it's thought because anti-Ro can sometimes "mask" the ANA.
Symptoms in Ro-lupus can extend throughout the whole SLE spectrum, I was told---but the odds of having the very worst SLE problems (kidney & CNS) are less in SCLE than in SLE. But that statement made me pay attention...
I was told Plaquenil is the drug of choice for such lupus, meaning systemic aspects but no active major organ involvement. And Plaquenil has helped me a lot. The antimalarials (like Plaquenil) are actually the LEAST of the three classes of lupus drugs. (Steroid and flat-out immune suppressants are the 2nd & 3rd tiers, respectively.) I had no qualms at all about taking it, as I really needed help.
I also practice strict sun protection measures (sunblock, hats with brims, long sleeves & pants, socks, and flat-out avoidance or minimizing peak exposure). So my days as a bathing beauty ended pretty abruptly! :D
Any questions, just give a yell, OK? But I hope you do the "right thing", because in lupus, skin problems are really an external sign of things going on beneath the surface. It's those hidden things that that are the core problem. Take good care, Vee
Re: Need Advice
Thank you so much for your response! I am so new to all of this info but its nice to talk to people who have some experience. :) It's all so confusing to me. The spot on my arm appeared over a year ago (about the size of a quarter) and was aggrevated by the sun (making it extremely itchy) so I did my best to cover the spot but consider myself somewhat of a "beach bum" I do however now wear 60 sunscreen on my face and avoid the sun (which is extremely hard for me) It wasn't until this past september that the spot started to get scaly and extremely dry. The second spot appeared in December so I finally went to the derm. When the results of the biopsy came back I was shocked and didn't know much about lupus. The derm sent me to a rheumy who did more bloodwork and seems to feel that I do not meet the criteria for a dx. I guess I'm just confused as to the many different types of lupus and what type I have but I guess that's more of a question for the dr huh? ;)
Thanks for the info re: the plaquenil I didn't know that it was the least of the 3 classes of lupus drugs. I guess my reservation about taking it is that I am not experiencing any other symptoms (no fatigue, joint pain, fevers, hair-loss, etc.) so I'm not really sure what the derm. hopes for me to get out of taking it. Not to sound naive (keep in mind I am new to this) but is it possible to stop or slow down the progression of lupus? What exactly constitutes a flare-up?
Thanks again for your reply!
Re: Need Advice
Jena, The good news is most people do not progress from "skin lupus" to the systemic kind. Maybe that's what the rheumie meant, that you don't have systemc lupus at this time.
The bad news: Since a few people *do* get rashes first, then more & more stuff later on, any competent dr. will keep on monitoring you---so from this point on you should comply & do any follow-up appointments as requested. And take your meds. And really be careful about sun exposure.
Plaquenil can help with the skin by decreasing photosensitivity, among its other benefits. You do NOT want scarring lesions, or permanent bald areas. Or for other symptoms to start creeping in.
Flares vary from person to person. Some people seem to stay in a holding pattern, repeating their same old symptoms. Others experience new &/or worsening symptoms. But, with luck, once medications and sun avoidance are begun, many do "lesser flares" (fewer problems & lighter versions of the ones that still recur). The best possible world would be NO flares, of course!
When I finally took myself to a Manhattan rheumie after fruitless years with suburban specialists, this new rheumie assured me that he could in all probability put the brakes on for me. Weirdly, I never doubted his word. (Maybe I simply didn't know enough? :D ) But he was right. And I'm compliant, as I've had some serious episodes throughout my life, ones that *may* have been all along, without my knowing, lupus-related. So, may YOU never have anything more than you've already had & no more of that, either! Sincerely, Vee
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