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Tumid Lupus / Panniculitis

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I was just diagnosed with Tumid Lupus & Panniculitis by the dermatologist after a skin punch. I am going back to the Rheumatologist next week. I have a big reddish brown patch on my chest into my armpit that is constantly sore and itchy. I am constantly tired - if I don't do what I need to do while I have the energy, I don't know when I'll have it again. No other real symptoms though. No achy joints, hair loss, etc. I'm a little afraid going into this - anyone out there been dealing with this for a longer period of time? How are the meds / symptoms long term?
Thank you,
Jenn
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replied February 11th, 2009
tumid lupus
I was diagnosed with tumid lupus, but don't have the fatique symptoms or anything else except red patches that are severely itchy on my legs. The doctor gave me a prescription for Temovate cream, but nothing else and said not to worry to much. Does this sound right to others?
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replied April 22nd, 2009
More testing...
Thank you for responding! Don't know if I'm not in the right forum or not - having a tough time finding an active forum.
My "rash" looked more like someone punched me in the chest & left a big bruise - it's cleared up some with the prednisone but hurts sporadically. I have the itchy yucky stuff on both of my upper arms & the temovate cream. I just had a 2nd biopsy - so creams won't cut it because it's too deep. Prednisone has helped some but there's other stuff going on too. I do now have the achy joints along with the fatigue.
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replied August 13th, 2009
Tumid Lupus
I've had Tumid Lupus since the year 2000, and it's been very frustrating finding good information about it. I have the tiredness that comes from Lupus, as well as frequent headaches, intermittent joint pain, and discoid-like scarring on my face and back. I've found that doctors don't really know very much about Lupus in general and almost nothing at all about Tumid Lupus. Make sure to see a specialist, but unless your Lupus symptoms are very bad, that isn't a lot of relief. The drugs that control Lupus are very bad for your renal system, so they generally only give them to people with moderate to bad SLE. I know that's not very encouraging, but it's what I've experienced.
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replied March 13th, 2010
Well here I am almost a year later, a week hospitalization due to Plaquenil reaction & 3 diagnosis changes... I've had Hashimotos for 16 years, so that disgnosis was no shock. I've been on Synthroid for years. My NEW diagnosis is Lupus SLE MCTD, APS & of course the Hashimotos. My hands and feet are always swollen & most always in pain. Feel hot. The rash on my leg is a result of the APS which is now a giant granuloma that won't go away. I'm always tired & really just pissing an moaning at the moment because today is not a day where I can say "I'm not feeling completely awful" because it's raining and today just sucks! Prednisone was bad for me most NSAIDs didn't work. I'm on Mobic, Synthroid & Zoloft. Mobic gives me some relief.
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replied April 8th, 2010
Hello I was diagnosed with lupus panniculitis. I''ve had skin lupus for years but never had a problem. Now this. My body looked like someone had beat me I was black and blue on both arms, my buttocks and stomach. Its going away but still itches from time to time. I try not to scratch cause I think that makes it worse. I was also very fatigue, fever, chills and night sweats. My body ached as well. The dr just gave me plaquenil but i havent taken it. they say is inflammation so i would rather take motrin. What cream do you use?
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replied April 14th, 2011
peaches35
Hello I was diagnosed with lupus panniculitis in Jan. 2010. Wow I am soooo happy to meet peopl like me. I am on a site called lupus foundation of america. Its only one more person like me. I am on Dapsone for my lupus but I am also on plaquenil for my RA. I dont use any cream. Can some one please reply and lets be friends on facebook or LFA.. Thanks
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replied April 27th, 2012
I also have a SLE and was diagnosed with lupus panniculitis about 6 months ago. I was in remission for about 5 years prior to getting the panniculitis. My symptoms were small cyst like lesions on my inner thighs, breast and on the side of my face and neck that grew rapidly and became large. I am currently taking plaquenil and prednisone daily. it has definitely helped but is not been gone. At one point the lesions became infected and I had to go on iv drug therapy to get the infection under control. some days it seems like it is better than other days worse. I am curious to see if other people have tried any other type of treatment for this issue as mine is not resolving from prednisone and plaquenil.
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replied August 6th, 2011
Natural Cures - Drugs not the answer
There are many natural ways to treat lupus without taking drugs that are incredibly harmful to your system. I have lupus profundus and manage it with an anti inflammatory diet and supplements. See the websites of Dr Fuhrman and Dr Mercola. Pharmaceutical companies want you to think that drugs like Prednisone make you better but all they so is make you sicker for the most part. I beg you please consider a holistic approach to auto immune disease - modern medicine is simply trying to suppress your symptoms.
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