Lupus Panniculitis??

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Kellysfirst
New Member


Date Joined Oct 2011
Total Posts : 10
   Posted 10/31/2011 8:15 PM (GMT -6)   
Hi, I'm new here smilewinkgrin
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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5680
   Posted 10/31/2011 9:32 PM (GMT -6)   
I don't believe we've had anyone here before with the Panniculitis form of Lupus, but we have lots of active members with SLE and Discoid Lupus.

From the little I have just read, it seems to me that the treatments are about the same, and that this is something people get before they have full-blown SLE. Unfortunately, we have heard before that it takes time to see a good lupus rheumy in Canada.

The Hydroxychloroquine is for disease inhibition, but you also need something to treat the inflammation. If the dr doesn't want to use the common steroidal anti-inflammatories (like Prednisone) is he at least suggesting some non-steroidal anti-inflams (NSAIDs)? Even ibuprofen will help...you need something to treat and control the symptoms!

Welcome to the forum, and hope you get some relief soon!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Kellysfirst
New Member


Date Joined Oct 2011
Total Posts : 10
   Posted 11/1/2011 8:18 AM (GMT -6)   
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

rarelupus36
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 11/5/2011 10:33 AM (GMT -6)   
Hi Kelly, I am sooooooooo glad to met someone like me. I've waited over a year to run across you. I was DX: with LUPUS PANNICULITIS in Jan. 2010. My doctor told me that it was rare. On top of that where mine is located and how my body is dealing with is even rare. I went to a lupus convention 3 weeks ago. I ask will I ever be able to shake hands with a person like me. The doctor said we are a rare breed. To be able to put all of us in one place will never likely happen. So I am very happy to say, I am here to try to answer any questions that you may have and what meds or working for me. I am so happy that I am shaking typing this. People feel our fustration but can not help us because they do not have the same lupus we have, its hard to hear that you are rare we don't know what to do for you. My Rhumy didn't know what to do so I called Duke Unv. in North Carolina myself. Now I am on meds or should I say MED. that helps. So please lets be friends. I have plenty of regular friends and special lupie friends but never a panniculitis friend. I met a woman that has a 4yr with the same thing but her doctor calls it profundus. I helped her get in touch with Duke. The med you need to get own is Dapsone 100mg once a day. Please email me if you can. I am new to the thread so I am not sure how to use this email yet. Mine is hospicegurl@aol.com I hope to hear from you soon.

Kellysfirst
New Member


Date Joined Oct 2011
Total Posts : 10
   Posted 11/5/2011 11:28 AM (GMT -6)   
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.

rarelupus36
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 11/5/2011 5:31 PM (GMT -6)   
you are more than welcome. Its been a joy evening seeing your words on this thing. No one know how lonely it can be when you think you are alone.

natta123natta
New Member


Date Joined Nov 2011
Total Posts : 1
   Posted 11/8/2011 5:40 AM (GMT -6)   
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.

uncompahgre1
New Member


Date Joined Nov 2011
Total Posts : 7
   Posted 11/9/2011 6:06 PM (GMT -6)   
I am also new to this group and had posted under the RA thread and it was suggested that I look at this one also. I will be going to my doc next week and hopefully find out what exactly I am dealing with besides Hashimoto Thyroidistis. I have bumps under the skin on my arms and they are ITCHY!!!!! Sometimes I scratch until i almost bleed and nothing seems to help with it. At first I thought it was hives but you can actually feel the lumps on my arms. I am trying to gather as much information as I can so when I ask questions some of it may make sense. What other symptoms do you have? Sorry to be a bother, but like you I find any Autoimmune Disease is a very lonely place. Thanks for any help!

rarelupus36
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 11/13/2011 2:33 AM (GMT -6)   
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 hospicegurl@aol.com 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
I am who I am panniculitis and all. I have lupus, lupus doesn't have me. Loving everyday like its my last.

rarelupus36
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 11/13/2011 2:55 AM (GMT -6)   
The only symptoms I had it looked like someone had a tight grip on my right leg and left four fingerprints. Each day more and more pop up. By the time I went to the doctor for it, it was on both legs very dark bruises from ankle to knees. It hurted to cross my legs put lotion on hell just looking at them hurted at that time. Now I keep headaches ( Just started past month ) my legs get swollen alot. Over a year now I had no symptom my color started to come back in my legs. Now it started on my thighs ( inside) its not as bad as the first flare I think it is because I take the dapsone. I get very tired and the sun make it worse. Over all I keep pushing but some days I don't feel like it
I am who I am panniculitis and all. I have lupus, lupus doesn't have me. Loving everyday like its my last.

Kellysfirst
New Member


Date Joined Oct 2011
Total Posts : 10
   Posted 11/13/2011 8:53 AM (GMT -6)   
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
 
 
Kelly

rarelupus36
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 11/13/2011 11:51 AM (GMT -6)   
kelly, thanks for the fast response. I guess we are not alone, it seem as if Natalie and uncompah. has similar symptoms. My bruises are flat under the skin. All but this new one on my thigh. The inside of my thighs are sore. Which is different it usually be on lower legs. As kelly said we can talk more via email.


hospicegurl@aol.com
I am who I am panniculitis and all. I have lupus, lupus doesn't have me. Loving everyday like its my last.

mallisha
New Member


Date Joined Jul 2012
Total Posts : 4
   Posted 7/10/2012 6:54 PM (GMT -6)   
 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.
 

Twinks
Regular Member


Date Joined Jan 2011
Total Posts : 66
   Posted 7/10/2012 9:57 PM (GMT -6)   
Excuse me for asking. But what is lupus panniculiti. I have bumps on both of my forearms but I think that is because of the sun exposure.

Thank you and I await any replies.



Twinks

lupus_fighter93
New Member


Date Joined Dec 2012
Total Posts : 1
   Posted 12/29/2012 8:13 PM (GMT -6)   
I also have lupus panniculitis.....

noradar
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/2/2013 9:59 AM (GMT -6)   
hi, am initially diagnosed as having lupus panniculitis subject to further tests but i have similar symptoms as that of natalie - itchiy, inflammations on my neck and upper arm appear with swelling and rashes; and now, my hands show signs of contact dermatitis, or sort of skin allergy, doctor says it is not related to lupus (but i doubt it); i found it also depressing but one thing i want to know - is this a communicable disease? will i ever hug and kiss my family again if this thing progresses in other parts of my body? please tell me so i can avoid contact and will not hurt other people with it....by the way, am happy that i am not alone.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5680
   Posted 1/2/2013 11:02 AM (GMT -6)   
Lupus is not communicable.

I don't know about contact dermatitis, but I don't think so.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Atlast
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/10/2013 11:42 PM (GMT -6)   
Hello Everyone
I stumbled on this forum by accident and boy I'm glad I did. I have been diagnosed with lupus panniculitis and am relieved to find out that I am not alone. My lumps are present on my arms and back. I also have large depressions in my back and arms from where the lumps migrated to form larger circles in these areas. I have been depressed for a long time due to the fact that my previous gp told me that he cannot help me because he is unfamiliar with my symptoms. I went out on my own and I'm now seeing an immunologist and rheumatologist who has me on plaquenil and prednisone.
I'm from Ontario Canada

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12168
   Posted 1/11/2013 12:16 AM (GMT -6)   
Wecome, Atlast.
Don't forget to post a introduction thread.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

mallisha
New Member


Date Joined Jul 2012
Total Posts : 4
   Posted 1/24/2013 3:36 PM (GMT -6)   
i have counted four of us so far was diagnosed 3years ago,after four years of symptoms.also was told it was rare.going to duke in april to see doctor about the pain tiredness cant stand to long or sit ,up and down all the time also a five year old.sorry for all of you hate to think about someone else feeling as crappy as i do no one should.

AllisonC70
New Member


Date Joined Sep 2013
Total Posts : 1
   Posted 9/26/2013 3:24 AM (GMT -6)   
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)

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5680
   Posted 9/26/2013 8:43 AM (GMT -6)   
Welcome -

This is a very old thread and the original posters are not around - I've given you your own thread at
www.healingwell.com/community/default.aspx?f=29&m=2862688
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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