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Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 10/3/2007 3:47 PM (GMT -7)   
Hi. I am normally on the Ulcerative Colitis forum because my daughter has UC. However I was recently diagnosed with discoid lupus. I had what I thought was ringworm on my upper arms (where alot of people get tattoos). The dermatologist thought is was granuloma annulare but decided to take a biopsy. He was very surprised that it came back as DLE. He told me to get an ANA blood test to rule out SLE. I get bloodwork often because I was diagnosed 5 years ago with leukocytoclastic vasculitis. All my bloodwork has been coming back fine. I am going for the ANA bloodtest on Friday.
I have always had sensitive skin. Ever since I was younger (around 9-10 years old) I have reacted to various things off and on--sitting on the grass, the sun, the heat. For the past 10-15 years, I get a rash from the sun/heat on my cheeks, spots on my thighs above my knees (if I am wearing shorts), and spots on my forearms. Every doctor I have been to checks my bloodwork, but basically says I am just sensitive to the sun (I don't spend much time outside, I can get the rashes from being inside a car or just basic summer heat). The dermatologist doesn't see a correlation between any of my rashes and DLE. Most recently I have had red spots on my face (on the bridge of my nose near my glasses, by my ear, and most recently on my cheek). The dermatologist said it was rosacea, which I have never had. I have had some extra stress recently because my daughter's UC is flaring.
 
Sorry for the long rant. I guess I wanted to know if anyone has any insight into discoid lupus. The dermatologist said it is not SLE and there is a <5% chance of me getting it. Ironically (or not) I have had "borderline" blood tests come back as possible lupus about 12 years ago when I was pregnant with my youngest child. When retested (and since then) I have tested fine.
Thanks for letting me ramble. Any information about DLE is greatly appreciated.
--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday
Rowasa - 7/07 tapering slowly
 
hydrocortisone enema - alternating with Rowasa
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! No more hydrocortisone enemas! Summer 2007 - slowly began tapering Rowasa
Keeping our fingers and toes crossed!!
9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortison enemas.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/3/2007 7:16 PM (GMT -7)   
Hi Bennie,

Welcome to the forum. Wow, isn't that a fine howdy-do from your derm. First of all, I don't know how he can tell you that you do not have Lupus. Even a negative ANA does not rule out SLE. If you look at my signature, you will see a link for Lupus Criteria. If you click it you will see the 11 criteria for diagnosing Lupus (SLE). You need four of the 11 for a positive diagnoses. Your discoid lesions are one and your sun sensitivity is a second.

You would think that a derm would know the difference between rosacea and malar rash . . . I'm not sure how he is so positive . . . but I've heard that a round of certain antibiotics will rule out rosacea, as rosacea will clear with antibiotics. Make sure your take pictures of your malar rash so you will be able to show it to a rheumatologist if you end up seeing one. If you are having ANY trouble with your joints or connective tissue get yourself to a good rheumatologist. Also, you might want to dig up the old ANA test that came out positive and see if they named a pattern. There are certain patterns that are more likely to indicate lupus. . . so there would be another clue and maybe even another criteria met.

I'm so sorry your son is dealing with an AI disease. It does run in families. . . . and Lupus is auto-immune too.

You've found a very supportive group and I'm sure the others will be along to say hello soon.

Keep us posted on the results of your blood work.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/4/2007 6:32 AM (GMT -7)   
HI Bennie and welcome. I don't have a lot to add to what Rosie told you. I agree with her about seeing a good rheumatologist - they are much more qualified to tell you if you have SLE than your dermatologist.

Please let us know if you have any other questions. Lupus is a difficult disease to diagnose and it can be a kind of overwhelming trying to take averything in.

Take care and I'm glad you joined us. Let us know how the rest of your labs turn out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 10/6/2007 10:08 PM (GMT -7)   

Hi. Thanks for the welcome. I did see my rheumatologist on Friday (for my regular checkup for my vasculitis). He was surprised at the biopsy (the report says "consistent with DLE"). I do get bloodwork done on a regular basis. When I was at my sickest with the vasculitis in 2002 the ANA was low? positive. A few workups after said equivocal. The past few years have been negative. The rheumy nows is trying to figure out if there is a correlation between my vasculitis and my DLE. He is getting a copy of the original biopsy for the vasculitis because he thinks, maybe, it could have been a misdiagnosis and maybe it was DLE even back then(?). He has always thought it odd that my vasculitis didn't manifest itself in any other way than with my skin.  

The rash I get on my face is not a malar rash.

I do take Plaquenil for my vasculitis so if I have lupus, I am taking a drug that would be prescribed for it anyway. I will speak with the rheumatologist next week to see how my bloodwork is.

Thanks again.


--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday
Rowasa - 7/07 tapering slowly
 
hydrocortisone enema - alternating with Rowasa
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! No more hydrocortisone enemas! Summer 2007 - slowly began tapering Rowasa
Keeping our fingers and toes crossed!!
9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortison enemas.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/7/2007 6:16 AM (GMT -7)   
Bennie,

I'm so glad your rheumy is on top of this. It sounds like he is really looking into it. And, you are right . . . you are on the first guns for lupus, plaquenil. Most of us stay on that even when we need to add other meds.

Thanks for the update and let us know how things go. It sounds like you are starting another flare sad . . . . sorry about that. I bet the hedrocortisone enemas were even helping other symptoms. Even cortisone in cream form enters the body . . . so when you stop the enemas . . . are you getting other symptoms as well (like joint pain, fatigue)?

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 10/7/2007 3:10 PM (GMT -7)   

Hi Rosie,

It is my daughter who has ulcerative colitis (not me). She is fighting a flare again and is on the hydrocortisone enemas.

However you are right, I am on plaquenil for my vasculitis. Except for the crazy, various spots I got on my body over the summer, I have been feeling fine. Since the weather has turned a bit cooler, all my rashes (although they are more like a spot here or there) are gone. I am still following up with my rheumatologist and will keep you updated.


--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday
hydrocortisone enema nightly, rowasa in the morning
40 mg prednisone daily
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly!
Summer 2007 - slowly began tapering Rowasa
9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/7/2007 4:58 PM (GMT -7)   
Oh . . . poor daughter. Give her a big hug from Rosie!!! To hard for young ones to have to deal with all of this (I'm so sorry, I thought that bratcat was your 16 year old cat . . . duh! now I see what a foggy mind I really have).

Bennie . . . if your doc didn't have you get an eye exam for the plaq, then you should make an appt with an eye doc and do that (you have to see an ophthalmologist, not an optician). Then they do follow ups to make sure the plaq doesn't affect your eyes. Great if you already did this.

Hang around here for a while and read lots about lupus in general so you get to recognizing some of the symptoms of trouble. Lots of us walked around for 20 or 30 years thinking everyone had our weird symptoms. It just sneaks up on you and you pass off each symptom, individually, as nothing worth reporting to the doc. Then you realize that all this stuff together eventually makes big trouble. Not to scare you, but just so you are informed. The literature says that it is not likely that you will cross over into SLE . . . but just in case . . . its nice to know the warning signs. I hope your rheumy appt goes well. There is a long post in the "Lupus Resources" you might want to read, with suggestions to new members. There is a link in my signature for that topic and the post is several down from the top.

Keep us posted!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/7/2007 5:02 PM (GMT -7)   
Hi Bennie:

Just a welcome to the forum from me. You've had lots of good information from Rosie and Hippi. I can't give much information about the DLE. I just wanted to say welcome and I hope you start to feel better soon.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

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