Anyone with children with lupus panniculitis

Hi all , I would like any information on lupus panniculitis my 9 year old son has just been diagnosed he has had symptoms since the age of 7, I have scoured the net but it all seems based on adults, he does seem to have a lot of lupus signs but with panniculitis .this causes deep lumps to form anywhere he has even had them on his scalp the are very sore , differ in size but they go red and hot on his skin then eventually fade away, he has recently had one that has left indentation on his leg, it would be nice to know we are not alone x

Last edited by

5 Replies

  • Since most cases of lupus develop in females between the ages of 14 and 45 it will be difficult to find parents of male children as young as your son who are having the same experience that you are. I found an article that might help, if you have not already found this one Your son needs to be seen by a pediatric rheumatologist. They are a pretty rare breed, but you may find one at under "find a member." There is no significant difference between panniculitis in adults and children.

  • Hi thanks for replying, we are due to see paediatric rheumatologist , I was kind of hoping we could get in contact with someone of a similar age for his sake didnt think it would be easy tho : )

    Thankyou for providing the link will take a look.

  • I'm not sure about lupus panniculitis. My six year old foster child came into care due to neglect by her parents and she was diagnosed @ one year old with panniculitis and her rheumatologist said it's similar to lupus and the same meds are provided. She has a host of symptoms. I am now experiencing legions (I think) in her head along with hard scalp. Very painful for her. I'm taking her to the pediatrician tomorrow because I don't know if it's related to her condition. I know red legions pop up on her stomach, legs, feet and face at any time. Sometimes they stay a few days. Sometimes they stay a few weeks. One time she had one smack dab in the middle of her eyebrows and the school put ice on it thinking she fell and hurt herself. This poor child has been through so much and up until 8/12, I'd never even heard of this condition. It's very manageable because with the exceptions of the side effects from the steroids and cyclosporine,it's been pretty manageable for the most part. Good luck.

  • Hi thanks for replying awful for your little girl at such a young age !!does she gets lumps/nodules under these red patches .

    My son has been started on plaquenil and had such horrendous side affects , couldn't get any advice from his dermatologist so ive stopped them, he is waiting to see a rheumatologist , but I do beleive panniculitis does share some of the same symptoms and im becoming increasingly concerened that they have it wrong about the lupus part!! Does your daughter suffer with intense pains , aching joints and fatigue ? Also does she have periods of remmision ...sorry about all the questions : )

  • My 17yr old daughter was just diagnosed 4/17/2014 with LP and right now she has been tested negative for SLE. Her nodules started right around her 16th Birthday 2012 She is currently on Dapsone for the last 5 days. They had to take her off of plaquenil because she was having vision changes. And they do not want to give her steroids because of concern for infection and her puncture biopsy site on her thigh is no healed yet. But when reading some info online it does not seem as it would be a bad idea for her to get some steroids. She has been having fevers on and off and the highest was Saturday 103.9 F. Since the doctors really don't know much about the disease and management of it, I was just wondering if they have noticed that when the LP is active and the lesions/bumps become harder if that is when the fever stays and is high?

You may also like...