Lupus Panniculitis??

Hi, I'm new here

My name is Kelly, I have been recently diagnosed with Lupus Panniculitis, with overlapping SLE symptoms. I kept testing negative for lupus in blood tests, but once they biopsied my masses they came back positive for lupus panniculitis.

So far I can get next to no info on this. I live in On, Canada and am waiting to get into the lupus clinic here. Not sure on the wait list though.

I'm really struggling with this, I have almost all the symptoms of systematic, but with the added bonus of inflammed masses of cells in my subcataneous fat tissue. They're painful, feel bruised, and I'm getting more despite being on Hydroxy Chloriquine 400mg/day.

The Rhuemy I see doesn't want to start me on prednisone, which is fine with me. But after 3 weeks I'm still not getting much in the way of relief...

Not sure what I'm really looking for, maybe someone that can relate, or even anyone else that has heard of this??

I'm finding Lupus to be a very lonely depressing disease

Thanks, I've been lucky to see some great specialists, and some not so great..lol
My rhumy really has no clue with whats going on and how to treat it. He initially started treating me for lupus when I went in because of my symptoms, but when all theblood work came back negative he switched to Crohn's and Colitis, when that came back negative, I had a diagnosis from another Dr. I'm finding I need to be the greatest advocate in this.
He gave me 2 treatment options, the hydroxy and dupone, he said after that he doesn't know what to do. It makes me a little nervous that he's so uneducated about this.
There's an amazing lupus clinic in Toronto that I'll be on the wait list for, I'm sure they'll have more answers. My biggest goal is to get these masses to stop, the rest of it I can deal with.
I'm finding the biggest hurdle is the exhaustion, I'm a single mom to a 4yr old and work full time. It's hard to alleviate the stress in my life.
Thanks for th ekind words, looking forward to meeting more on here

I read your post in the grocery store line up and started crying, and have been crying all the way home..lol
Thank you
I'm e mailing you now.

hi my name is natalie. when i was 9 i was diagnosed with Lupus Panniculitis. im now 21 and ive never really done my research in this. one day when i was 9 i woke up with bruse like lumps on my arms, i had a biopse and it was confirmed lupus. since then at age 16 it spread to my neck then my head i had 3 biopsies to confirm this was lupus and was told the spread was caused by a trigger- headlice. following this i have recently had another biopsie at the beginning of this year on a mew lump as my doctor had thought maybe i was diagnosed incorrectly when i was 9 as he seems to think my lupus is very mild. im not very educated on this disease and am suprised from reading what you have written that this seems to be very rear hence why i thought i should let you know ive got it to. i take plaquinel tablets once a day and slowly get weened off this untill it comes back. the problem now is my new doctor has aksed me to start taking 2 tablets on the weekend and one on weekdays. this is the most ive ever taken since age 9 and my parents are very worried. does anyone know of natural medicans that can be taken.

Hi Natalie, I am very happy you found us. I emailed Kelly to let her know its more of us out there. I think you asked about the plaqunil I don't understand why you are just taking one a day when it should be two aday anyway. I think you has the classic lupus panniculitis on your arms and neck thats what the text book says is should be. Kelly and I don't have it in the classic areas. I have it on my legs they did a biopsy and thats what it came up to be the doctor didn't think it would've come up that. I will let kelly tell you were her's is located. I don't know any natural meds that will help. I am on Dapsone 100mg once a day. I think kelly maybe starting that med also. I don't see how you made it this far with out taking the dapsone. It helped mine 100% until this past month I am just now getting a little flare nothing like my first one. I go to Duke Unv. to see the doctors. My local rhumy do not know how to handle this in no way. My email is [email protected] you can email if you like thats what kelly and I does now. Natalie what part of the states you are from.

@Uncompahgre1 I have never been itchy my panniculitis is flat under the skin lots of bruises. It look like my legs in a major car wrecked at first. Its your fatty tissue that is dying under your skin. I think you maybe similar to Natalie than me and Kelly. It all seem like its coming up to be the same lupus. They say we would be spread out far apart. I am from South Carolina and Kelly is from Canada. Where are you from?
You can email me also if you like

Hi Ladies,

Natalie, not too sure why they only had you on 1 tab, I tried it and had to take 2. Sounds like they still have you on a children's dose?? I started it right away on 2 once a day. It made me tired and I just took it at night after dinner.

My main mass is over a year old, and is 5/6cm in my abdomen. It came up as a bruise, felt and still feels bruised. It does not itch at all?? I then got another mass in my pubic area, on the bone, same as the first. I also have 2 small ones in the last 3 weeks that have come up on the back and side of my calf. I think I'm getting one under my breast and upper, outer thigh. The areas are tender and feel bruised. There is intitial discolouration, it goes away then I'm left with the tenderness. None of the pills have helped with this yet, the pills have helped with secondary symptoms. I have a lot of the SLE symptoms too.

Feel free to e mail me, or you can use this e mail address to find me on Facebook

[email protected]

Kelly

 i also have been diagnosed with lupus panniculitis not sure what it is or how to treat the side effects would love some help my doctor told me to look it up but not much info out there very rare i guess.

I also have lupus panniculitis.....

Lupus is not communicable.

I don't know about contact dermatitis, but I don't think so.

Wecome, Atlast.
Don't forget to post a introduction thread.

Hi I have been searching for answers on how to treat my recently diagnosed Lupus Panniculitis, about a year ago I had three small lumps appear on both arms (upper) and right on my right shoulder blade at first they were little balls I had an ultrasound and was told that they were a type of lypoma, and that they were fine but over the next eight or so months they began to flatten and two of them have a bruise like appearance and one is not so dark but thicker any way I went back to the doctors and was sent to a specialist who did a biopsy which confirmed that I have a rare form of Lupus so I have read a lot of your posts and I don't seem to have the same problems I have don't any pain or itchiness I only have the same three and its been well over a year since they first appeared, I also have never had any SLE symptom's and have always been very well, the doctor has never seen a case like mine since medical school and cant give me any info except to say that it was triggered and I could go on the same medication to which those suffering SLE lupus are on but since im not sick or in pain im looking towards a natural remedy I have a friend who has SLE and she was on the malaria drug and weened herself off it by taking colloidal minerals watching her diet and drinking stinging nettle tea so has anyone got anything else I can try? (im in Australia)