lupus panniculitus

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Brenda Jean
New Member

Date Joined Jun 2013
Total Posts : 2
   Posted 6/30/2013 6:40 PM (GMT -6)   
Hi, I am looking for someone who has Lupus Panniculitus.  I've had it for 11 years and the Drs. have tried so many things and nothing seems to work.  I need support.  No one I know has this.  No support groups even for Lupus in my area.  I live in NE.  I've had many biopsies and been to Mayo's three times.  I have red sore lumps from my neck to my knees.  These cause great pain.  After a while they seem to be growing together and calcify.  I've even had chemo for 8 months.  I get terrible rashes, very itchy, last one was on my left arm from just above the elbow to my wrist.  I'm on plaquenil and 5 mg of predisone.  I'm also in a drug study which is not helping me either.  I hope someone will email me that I can talk to.  Thank you.

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 7/1/2013 7:26 AM (GMT -6)   
Welcome to our forum Brenda Jean. I'm so very sorry that you've had this awful condition so long. I don't know anyone  who has this and The Lupus Book only has one paragraph. It does state that besides plaquenil, oral corticosteroids, and steroid injections into the lumps, anti-leprosy drugs can be used. I'm sure you already know all this. I really hope someone else will come along who has this condition. Feel free to visit us anytime, even if you just need to vent. Love, Butterflake

Brenda Jean
New Member

Date Joined Jun 2013
Total Posts : 2
   Posted 7/2/2013 7:44 PM (GMT -6)   
Thank you Butterflake.

I appreciate your reply. You are the only one who replied. Guess no one has this. I appreciate you replying. Love ya, Brenda Jean

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/2/2013 11:09 PM (GMT -6)   
If you do a search there are a number of people who have asked about this in the past. Perhaps you can search and find some who have left their email addresses. (Found in the blue envelope under their names.)

Sorry we can't be of more help.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Jan 2013
Total Posts : 1038
   Posted 7/3/2013 4:32 PM (GMT -6)   
I also do not have this condition but I did want to reply and welcome you. It can be so much harder to cope when you cannot find some one who knows what you are going through. When I was first dx with UC. I had never heard of it and knew of no resources. I suffered for a long time alone. Luckily I eventually found a support group. I cannot imagine having to suffer alone 11 years. Good luck.
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31
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