(Sigh) so the dr called and said that the first biosy on the sun exposed skin was negative for a lupus related rash. Probably some type of eczema (outside yesterday and it started to come back so I do believe its related). The second test specifically for lupus came back positive. It says linear IgG deposits at the basement membrane zone. She faxed my results to my rheumy. I don’t know what all this means…dle? Scle? Sle? Of course I start looking stuff up (darn Internet) and what I’m finding is that it’s indicative of SLE. Does anyone know? I have mixed emotions…possible finally pinning down a firm diagnosis and yet the reality of that diagnosis.
Jend
I have had three positive skin biopsies for cutaneous tumid lupus. IgG deposits are commonly found in DLE (discoid skin lupus). There are five different types of cutaneous lupus. See the below website
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learna… articleid=2324&zoneid=526
Positive IgG can mean you had an autoimmune issue! But it can be several different things! Most inportantly you should stay out of the sun! The sun is my enemy with Tumid Lupus! Protect yourself with sunscreen and protective sun clothing.
Also make sure they did part two of the biospy which is called immuneflurescence stain, this part of the test will tell you the type of skin lupus you may or may not have. It is the most important part of testing the biospy.
Best of luck and I hope you find the answers. I am here anytime if you want to talk just reach out.
Deenie
Hello Jen,
Deenie as given you some "Excellent advice" regarding your results and like she's stated there are different types which only your Dermo can confirm.
DLE means - Discoid Lupus Erythematosus
SCLE means - Subacute Cutaneous Lupus Erythematosus
SLE means - Sytemic Lupus Erythematosus
The link below also explains more about the skin...reading the links will help you for when you go for your results, so you'll know more for what your specialist is talking about.
Terri :)
My biopsy said Rt thigh vascular intrface dermatitis with occisional eosiniphils
right lower leg-- patchy lichenoid interface sermatitis with rare eosinophs
A lichen planus vs drug induced lupus vs lupus vs drug rash vs pr. I have no idea what that means- That being said my rheumy said I have sle.
freightliner
The rash could be drug induced or it could be a reaction to medication you are on! It could also be a vasculitis that can come with having systemic lupus. The results sound like they are not sure. So I would wait to see what your rheumy has to say about it. If it was a lupus type of rash they should have been able to identify the type of skin lupus it is with the biopsy. I wish I could help you out more, but from the sounds of it you will have to wait for your rheumy to way in on the results.
Do you have appointment anytime soon? If not, maybe you want to call and get one so that you can figured it all out! But whatever you do please stay out of the sun!
This the same way that my SLE Lupus was diagnoised. The sun activates something in the skin, then your antibodies attacks it leaving lessions, dark marks and a rash over areas of the body.
So I don't know if this news makes you happy or sad but (chanting) "your one of us" Your one of us" Your one of us".
Take Care
We are all in this together.
I did find a definition of the basement zone: http://www.thefreedictionary.com/basement+membrane+zone I never heard of it before! I tried reading the articles that came up about the linear IgG deposits but they are aso technical that I don't know what they mean! I think I would have your doctor to translate and tell the significant of that. I tried, but I sure don't get it. This article might help but I am not sure: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3039011/ I has a skin rash biopsy tested for lupus and my dermatologist thought it indicated that I had a rash from Hashimoto's thyroiditis instead. Good Luck.
Thank you…
Carolee888 that article is very informative and a little scarey. From what I read the specific IgG band in the nonlesional skin is usually indicative of SLE with a poor long term prognosis usually with nephritis.
I sent my rheumy an email. I’m (im)patiently waiting for him to respond.
I too was dx with SLE, but I had the tumid lupus rash first! The definition of IgG deposits basement membrane can mean many things, including SLE! But it could also mean kidney failure too. So just wait to see what the doctor has to say.
The sun triggers all five kinds of the skin lupus and also triggers flares for systemic lupus and that is why we all need to stay out of the sun “period!” In agreement with Carolee888 thyroid disease can also cause a rash on your body as well. As my dermo thought that was what my rash originally was! I had to have my thyroid removed ten years ago, because of the disease and nine lesions. It can all be autoimmune related. I also had vasculitis on both my legs from lupus. At first the dx was a drug reaction, but it was missed dx and later found out it was Leukocyteclatic vasculitis, which is small cell vasculitis and common with systemic lupus.
The moral of my story is that I have been to hell and back trying to be Diagnosed! I have had a rash on my body since I was 17 years old that was triggered by sun exposure and no one figured it out until I was 49 years old. I forced the doctor to do a skin biopsy and low and behold, it came back with a rare from of cutaneous lupus. In disbelief over a three year time frame I had two more biopsies done and they all where found to be positive for tumid lupus.
I am a stickler for skin biopsies because of my experience. I could have been dx 25 years ago. A simple biopsy! The whole experience has caused me to do a ton of research on the subject matter.
Jend, thank you for calling the doctor! Please let us know what you find out.
Concerned… Deenie
Hi Deenie,
It's funny but i've answered many discussions involving the skin and my first rheumo the idiot told me i had DLE/SLE and i've just read a letter my Dermo sent to my GP who did the bloods and found out i had Lupus...I don't have Discoid Lupus, i actually have (SCLE) Subacute Cutaneous Lupus Erythematosus with SLE.
Good job i'm with a good rheumo now instead :)
Rheumy answered my email and all he said was that he saw the reports and we will go them at our next follow up. I don’t see him until the end of August. If I make a sooner appointment does that make me look paranoid?
Terri
From my understanding and reseach here is what I have found to date: They are all cutaneous (meaning skin) however there are three subtypes and six different types which I have outlined below:
Subtypes:
Acute - (ACLE) butterfly rash and lesions that tend to be transient followed by sun exposure.
Subacute - (SCLE) consisting of skin lesions that are scaly and evolve as polycyclic annular or psoriasiform plaques. characteristically the lesions appear in sun exposed areas, but not the face and is usually assoicated with autoimmune disorders such as Rhematoid arthritis and Sjogren’s syndrome; Lesions of SCLE may have an annular configuration with raised red borders and central claering; and
Chronic - (CCLE) under this subtype there are six different types which have been listed from the most comman to the rarest: Discoid (DLE), Chilean (Hutchison), Lichen Planus (overlap syndrome), Pannicutitis (profound), Tumid (LET), and Verrucous (hypertrophic LE).
We are doing better in this area now. When I was dx in 2007 there where only five types of chronic cutaneous LE and now there is six. I am no longer have the rarest type! Yippy!
No! You just want answers! I understand that.
Jend719 said:
Rheumy answered my email and all he said was that he saw the reports and we will go them at our next follow up. I don’t see him until the end of August. If I make a sooner appointment does that make me look paranoid?
Rheumy has no other openings before my appointment Aug.21. Ugh! Maybe I should go to my GP and have him do kidney function test?
Oh bless your Deenie for adding the info as i was checking also but Discoid Lupus symptoms do come involved with (SCLE) also...at the moment i have the lovely butterfly rash again.
Well i am pleased you don't have the rarest type mate because you was struggling with it.
Love Terri :)
Dewing3569 said:
Terri
From my understanding and reseach here is what I have found to date: They are all cutaneous (meaning skin) however there are three subtypes and six different types which I have outlined below:
Subtypes:
Acute - (ACLE) butterfly rash and lesions that tend to be transient followed by sun exposure.
Subacute - (SCLE) consisting of skin lesions that are scaly and evolve as polycyclic annular or psoriasiform plaques. characteristically the lesions appear in sun exposed areas, but not the face and is usually assoicated with autoimmune disorders such as Rhematoid arthritis and Sjogren's syndrome; Lesions of SCLE may have an annular configuration with raised red borders and central claering; and
Chronic - (CCLE) under this subtype there are six different types which have been listed from the most comman to the rarest: Discoid (DLE), Chilean (Hutchison), Lichen Planus (overlap syndrome), Pannicutitis (profound), Tumid (LET), and Verrucous (hypertrophic LE).
We are doing better in this area now. When I was dx in 2007 there where only five types of chronic cutaneous LE and now there is six. I am no longer have the rarest type! Yippy!
Do what you think is best! Just because you have a rash doesn’t mean your kidneys are the problem. It is just a possibly. Are you having any pain in your kidneys or notice any urination problems?
Jend719 said:
Rheumy has no other openings before my appointment Aug.21. Ugh! Maybe I should go to my GP and have him do kidney function test?
You are welcome Terri. I believe we all struggle with this disease, it doesn’t matter what type it is SLE or Cutaneous its a struggle!
Tez_20 said:
Oh bless your Deenie for adding the info as i was checking also but Discoid Lupus symptoms do come involved with (SCLE) also…at the moment i have the lovely butterfly rash again.
Well i am pleased you don’t have the rarest type mate because you was struggling with it.
Love Terri
Dewing3569 said:Terri
From my understanding and reseach here is what I have found to date: They are all cutaneous (meaning skin) however there are three subtypes and six different types which I have outlined below:
Subtypes:
Acute - (ACLE) butterfly rash and lesions that tend to be transient followed by sun exposure.
Subacute - (SCLE) consisting of skin lesions that are scaly and evolve as polycyclic annular or psoriasiform plaques. characteristically the lesions appear in sun exposed areas, but not the face and is usually assoicated with autoimmune disorders such as Rhematoid arthritis and Sjogren’s syndrome; Lesions of SCLE may have an annular configuration with raised red borders and central claering; and
Chronic - (CCLE) under this subtype there are six different types which have been listed from the most comman to the rarest: Discoid (DLE), Chilean (Hutchison), Lichen Planus (overlap syndrome), Pannicutitis (profound), Tumid (LET), and Verrucous (hypertrophic LE).
We are doing better in this area now. When I was dx in 2007 there where only five types of chronic cutaneous LE and now there is six. I am no longer have the rarest type! Yippy!
I response to your question…I already gave hypercalciuria (voiding all the body’s calcium). I’ve been using the bathroom ALOT more than usual. I’m waking up every night and that never used to be a problem. Also, some incontinence (sneezing, coughing, laughing etc) but that part may be normal for my age (turned 40 on fri).
Also, in the article that carolee888 posted the link to…it said
“A positive LBT may also be a predictive value for the prognosis of LE patients. The deposition of IgG in nonlesional sun-protected skin is correlated with anti-dsDNA antibodies titer and with higher incidence of renal disease, although a negative LBT does not necessarily exclude the possibility of renal involvement.11,20,22 A positive LBT within sun-protected normal skin also indicates decreased long-term survival.”
I’m just a little scared?
Jend
I understand how you feel scarred. The websites are just an educational tool for us to use. We are not doctors just members that have been through a lot and we are trying to help each other understand this complicated disease. I reached out because I have been where you are now and wanted to give you support while you are waiting for your results. You know your body the best! Like I said before, do what you think you need to do to get answers and some peace of mind! I would have to believe that if your doctor read the report and felt that anything stood out or there was any life threaten issues he/she would have called you to give you guidance or moved up your appointment.
I was scared for many of years because no one would listen to me. I was not crazy just wanted to know why my body was doing the things it was doing! So I am right there with you! I am sorry that you are dealing with all of this and all I can say is that you need to keep pushing forward until you have some peace of mind. Stress is your own worst enemy!
Deenie