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Old 11-22-2012, 03:46 AM   #1
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Pics that aren't worst case senario

Hi,
I am looking for pics that aren't the worst case of skin lupus that a person can have. The internet always shows the worst of the worst and my daughter has new skin issues that I would like to see if they match. I'm not going to let her skin get to the worst it can be to see if it is, it looks bad enough to me as it is.

Anyone know where I can look at pics of the skin issues?

Thanks in advance...

 
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Old 11-22-2012, 07:01 AM   #2
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Re: Pics that aren't worst case senario

Hi & welcome. I've read that even doctors can't necessarily diagnose skin problems based on appearance, probably because there are something like 16,000 or more skin conditions, so many look similar to the naked eye.

Has a doctor seen her new skin problem? Does she have a lupus dx? I only ask because if she's already diagnosed, her doctor may not even need to know EXACTLY what the lesions are, but instead might go right to preventive & remedial advice.

But if she doesn't have a dx yet, personally I'd not delay getting professional advice, in hopes of avoiding permanent damage (scarring, depigmenting, hair loss, etc.) But even more important, a doctor must determine the extent of lupus, meaning what things beyond skin are involved, if any. (I hope none.)

We're only patients, but if your daughter and you could describe her skin problem a little further, we might be able to share more useful "patient feedback". For example, what it looks & feels like. Where it appears. How long it lasts. Whether sun triggers it. Whether it scars or depigments. Etc.

I had many subacute cutaneous lupus erythematosus (SCLE) lesions, the annular (ringlike or targetlike) kind. (There's a second SCLE called psoriasiform, that looks like psoriasis but isn't.) The SCLE's tend not to scar or depigment. I also had a big discoid (scarring) lesion on my face that required surgery because it wouldn't heal. Like many with lupus, I really have to guard against UV rays. I've only had one big outbreak since starting Plaquenil and sun measures.

I realize the above is only a small start, so I hope your daughter & you post more soon. Sending you both holiday greetings & warm wishes, sincerely, Vee

 
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Old 11-22-2012, 03:27 PM   #3
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Re: Pics that aren't worst case senario

Thank you Veeg, no she hasn't been diagnosed yet. There are some things that I've noticed with her that have gone on for a long time (not skin).
Since you are asking please sit down because this will take a while. My daughter is 10 and was diagnosed with mosaic Turner Syndrome and Triple X syndrome at 19wks gestation. As an infant she was always tired. I know lil ones sleep alot but she has always seemed fatigued. When she was 3yrs old we found psoriasis (she is 3rd generation). Then, typical of a Turners girl she was diagnosed with hypothyroidism around age 5. In that time she developed nail psoriasis in most all her nails. Still always tired. Summer's aren't great, she has never taken the heat well and has played mostly inside. She tans easily. Her psoriasis waxes and wanes always worse in late winter.
She was diagnosed with Type 1 diabetes at age 8 although she is still in honeymoon to this day. Oh, just before that she was diagnosed with reflex sympathetic dystrophy, basically her nerves were thinking she was in majorly serious pain from a minor injury and the pain gets to its worst and never shuts off (that has almost gone).
Now she has alopecia that I found at the nape of her neck and diagnosed two months ago. She is losing hair in her part on top of her head and the scalp doesn't look like or act like psoriasis. It's flaky looking but not pink and the hair loss is beginning to run the length of her part.
She has had places that are coming up all over her body that look like tny red dots, then they feel like they are clogged up hair folicles. Then they seem to open (?) or pop with out anything coming out of them. They're dry feeling and looking. Then it seems that the skin problem spreads out a little looking like psoriasis but doesn't act like it. It spreads to about the size of a dime or a nickle. It stays red and gets a little flaky looking. No psoriasis meds work on them. The backs of her upper arms is where most of it is and then her back, hips, legs sides, eyes, fore head. Actually I'm not sure if whats on her forehead is psoriasis or not. Her eyes have had P before but this doesn't act like psoriasis.
Her sleeping issues have bothered me the most because no one has attached that to anything she has had. The alopecia was the straw that broke the camels back for me because of all the auto immunes (5) and no one seems to care that she's tired all the time.
As an infant she got prescribed a sulfa antibiotic and had a HORRIBLE reaction (mostly skin) and that was a horrible looking sight. Big huge (about the size of quarters) and all over her body. She didn't seem like it bothered her itchy wise.
I have been all over the internet for years to get things figured out and I am kind of nuts. I'm sorry if I threw all that at you but I thought you should know everything. I don't think I left anything out.

 
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Old 11-22-2012, 03:47 PM   #4
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Re: Pics that aren't worst case senario

I forgot to mention that we are waiting to see the derm..... I called this week but they were only open three days and there was only one doc there.
She also has a ped rheumy that she has seen for joint aches ( I DID forget one) and the RSD. She may think I'm crazy once I call her about this. I was kind of thinking that maybe I could see if she would work with her ped with the blood tests because she is in Pittsburgh and that's a 2 hour drive. I had tried to talk to her endo about this to see if they could help but they heard the words "new skin problems" and told me to see her derm.
We have many auto immunes on my mothers side of the family and a few on my husbands sides. Lupus is in a second cousin of mine the rest are crohns, thyroid, arthritis.

 
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Old 11-23-2012, 08:06 AM   #5
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Re: Pics that aren't worst case senario

I must have scared everyone away... it's alot to handle.

 
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Old 11-23-2012, 09:16 AM   #6
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Re: Pics that aren't worst case senario

Dear mommymaul, I sat down as you asked. I'm so sorry to read about your 10-year old daughter's issues. I know just a little about Turner syndrome because my husband's second daughter was born with it. You two are indeed dealing with an awful lot.

I'd probably proceed from the thought that not all skin problems are really skin problems, because things like alopecia, rashes, and other skin manifestations can occur for such various reasons. So I'd want her pediatrician to see see both her firsthand. If she hasn't had basic bloodwork and metabolic panel done VERY recently, I'd want those, incl. blood glucose, thyroid, plus any other of her "usuals".

If the pediatrician were to run ANA (antinuclear antibody), the rub there could be that ANA is only a very general test that could be positive due to her *already known* conditions (Type 1 diabetes, psoriasis, etc.). When she saw the pediatric rheumatologist, were the more specific autoantibody tests run, such as anti-ds-DNA, anti-Ro, anti-La, etc.? (There are a bunch seen in lupus and its close cousins.) If these were run, was it recently?

If those specific rheumatology-type tests were already done (recently), and IF the pediatrician doesn't find anything way off in the brand-new labs that points in some far different direction, then I'd ask the pediatrican to weigh on dermatologists in your area. If the answer is, given multiple issues, it's wiser to go to Pittsburgh, I'd ask the pediatric rheumatologist for input, so they rheumie & dermatologist could coordinate readily.

During my dermatology outings, I learned that if lupus rashes are suspected *but* bloodwork doesn't provide sufficient clarity, dermatologists can do deep-punch skin biopsy with immunofluorescent stain tests that zero in on lupus. (You could post again on that subject, to talk details. Or you could go to the lupus board & inquire about her skin manifestations, tests people have had, etc. Lots of rashes there, plus I believe others there must have had biopsies, not just me.)

I think my biggest thought (in that mess I just wrote) is that I'd want her dr. to actually see her, in case her newest skin problem or anything else points to something FAR different than anything we can think of... mainly because we're not doctors. But you know her best, so if you have a strong feeling about one approach vs. another, chose that one. Stay in touch, when you have time, we're always here. Best wishes to your daughter & you, plus hugs for you both, Vee

 
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Old 11-23-2012, 09:49 AM   #7
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Re: Pics that aren't worst case senario

Nope, didn't scare everyone away! Bye, Vee

 
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Old 11-23-2012, 12:12 PM   #8
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Re: Pics that aren't worst case senario

I had planned on getting her an appointment with the derm and the ped both as close together as possible. I guess waiting to see what the ped says would go first (?).

I hope that you aren't speaking vaguely to me in hopes to spare my thoughts until we can see a doctor. I came for some frank talk because I really needed to bounce things off with people who have been there before. I know there is lots with lupus in general and not just skin problems.
I have no one to speak about this with while I am waiting to talk to any of the docs. I feel like I'm on the right track and I just want to know that I should stay on it. As bad as this is to say if my hunch is right this will finally explain everything ( to me anyway). If this is true then when they say advocate for your child.... I think I have done all I can do. Her long term symptoms have kept her from school every year and every year I am close to going to jail because I had no one to listen to me and no where else to turn. I just felt that I couldn't stop looking, she deserves for me to keep finding out what is going on. Nothing that she has been diagnosed with has answered the questions for me.

 
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Old 11-23-2012, 05:11 PM   #9
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Re: Pics that aren't worst case senario

Dear mommymaul, I wasn't being vague on purpose, never. I was trying to say that the conditions you've cited have overlapping symptoms. Joint pain can be caused by hypothyroidism, lupus, and psoriasis. Rashes can be caused by Celiac sprue (known to be common in Turner syndrome) and lupus. ETC.

Your description of her new skin eruption didn't immediately sound to me like one of the lupus-specific rashes, but that means NOTHING since I'm only a patient. But that's why I asked what her pediatric rheumatologist found. But even if he did do all appropriate labs and a terrific evaluation, patients do change, doctors can be wrong, labs can poorly timed, etc.

Regarding her new skin problem, the #1 point to me is that it's new, so I absolutely think you're smart to go further. Please don't think I thought otherwise.

Re: lupus-specific rashes, here are some proper names for the ones I've heard of: discoid, malar (butterfly), SCLE psoriasiform, SCLE annular, bullous, hypertrophic discoid, lupus profundus, tumid LE, and scarring alopecia. Personally I've had SCLE annular, discoid, and bullous.

But I wonder whether a "dot-like" rash is lupus-specific. For example, "purpura" are reddish/purple dots; these must be evaluated to ensure they aren't being caused by low blood platelets, which is a very serious condition. "Cutaneous vasculitis" can look like red dots. And there must be more dot-like things.

Because a dermatologist is equipped to evaluate ALL rashes and rash-like things, starting there makes perfect sense to me, too. I'm so sorry, I thought, probably totally wrongly, that you had to work through your pediatrician. If you can see specialists directly, YAY, and I hope you see the dermatologist soon. Send updates when time allows, OK?

I know Turner syndrome poses huge concerns, and that you're worried about lupus being a possibility on top of Type 1 diabetes, hypothyroidism, psoriasis, and RSD. We'll really root for your daughter and you & hope that you stay in touch. Someone is always here to talk to. All my best to you, Vee

 
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Old 11-28-2012, 02:30 PM   #10
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Re: Pics that aren't worst case senario

Hi mommymaul!
I wanted to respond on the rashes..
I was just dx'd with lupus in October. I have been struggling for ten years with many symptoms that GP's & a few other specialist would just say it's nothing. I too had to do some research of my own and finally found a great rhuemy who did the proper blood test to dx'd me correctly. One of the main symptoms I had was joint stiffness/pain/swelling and rashes on my face,neck,chest & back. I had this for about ten years..now they were getting worse . ThEy looked almost like round,red - enlarged mosquito,pimple like rashes w/o puss. My doc did say mine was not the "typical" rash that is mostly seen in lupus but was definitely lupus. I looked all over the Internet to try and find something similar ,which I couldnt but found some similar in size,shape & look. i would just have your doc check the rash anyway cause lupus is always a mystery...good luck!

Angela
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Old 11-29-2012, 08:19 AM   #11
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Re: Pics that aren't worst case senario

Hi, Angela & Mommiemaul. This is to clarify what I wrote earlier. The only reason my first thought didn't go to a lupus-specific rash was because of the phrase "tiny red dots". That made me think more of vasculitis, petechiae, or something else.

But larger red raised areas, size of dimes or nickels? If triggered by sun, I think that would be important info, and could make certain lupus rashes possibilities.

But if on back of arms, where sun isn't so likely: I'm guessing that could open up A LOT of candidates, like drug reactions, food allergies, and many other things not "specific" to lupus.

Another useful aspect might be itchiness. I think most lupus-specific rashes tend not to itch, except for lupus urticaria (hives) and chilblains. But whether & how much that can vary among patients, I don't know.

Some of the factors above are useful info, when describing rashes & lesions to a doctor. As always, only a doctor can say for sure what's what.

Angela, like you, I was diagnosed with with a less-common rash: subacute cutaneous lupus erythematosus (SCLE), the annular (targetlike) form. There's a second SCLE rash called SCLE psoriasiform (or papulosquamous) that looks very different, like psoriasis. I was told that anti-Ro is very often positive with both the SCLE rashes, but that ANA is positive in only about 70%. I tested positive for anti-Ro. Also had 3 deep-punch biopsies + stain tests that confirmed it as a lupus rash---think that test is a "lupus band test".

Mommiemaul, I hope you've gotten your daughter in to see her dermatologist & are moving forward to answers and help.

Sending best wishes to you both, bye, Vee

 
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