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Discussion Starter · #1 ·
Give me your opinions on what you think about this? I don't know at all if this correct--it's just a guess.

Since malar rash spares the nasal folds over the nose and cheek, I see where rosacea doesn't spare the folds.

So I asked my rheumy before if he thought this rash was lupus or rosacea and he studied me face and neck real good and he said it's pointing toward lupus.

So can a malar rash possibly cover the nasal folds?

CindyLou
 

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Hi Postie,

No a malar rash cannot cover the nasal folds. But photosensitivity rash can, so maybe that's what it is?

love
Lily
 

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Discussion Starter · #3 ·
Lily

What does a photosensitivity rash look like? Is that a connective tissue disease rash?

My rheumy said the rash I have is a connective tissue rash.

Does a photosensitivity rash stay the same exact place for years on end? That's what mine is.

CindyLou
 

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The skin is the largest organ of the body. For an account of connective tissue see
http://arthritis.about.com/od/mctd/g/connectivetiss.htm

That site also describes various autoimmune disease CTD descriptions explaining the symptoms and blood work that can be useful in distinguishing one from another.

Lupus is one of a group of diseases known as autoimmune connective tissue diseases. If there are lupus specific rashes present that is an important criterion towards diagnosis of SLE.
The sort of lupus specific rash we are discussing here is the malar rash associated with systemic disease. ("Malar" means on the cheeks but it can be found elsewhere on the body)

It presents in a variety of ways and may resemble other skin conditions including rosacea. There are several diseases and conditions that have similar looking skin and are photosensitive.
My understanding is that the lupus rash usually spares the folds where the nostrils meet the cheeks and the area below the nose, in other words, but like almost everything in lupus, it isn't a hard and fast rule but a general indication.
It can come and go or be permanent, be worse sometimes than others usually when disease is not under control or during a flare, or after UV exposure. Most often UV exposure means sunlight whether indoors or out but fluorescent and halogen lights also emit UV. The rash can change appearance too : it might be a faint healthy looking blush or it might have a rather lumpy and very inflamed, swollen look.
There are several picture sites linked to in a 'stuck' notice at the top of the Symptoms section of the forum. You would want to look at 'acute cutaneous lupus' since that is the proper name for the malar rash.

The best way of ascertaining whether your skin is lupus related or not is to see a dermatologist ! It is true that sometimes they can't always tell by looking and it is true too that sometimes even a biopsy might produce uncertain results.

Even if it is clear that your skin is specific to lupus or possibly another connective tissue disease, you don't have enough criteria for a diagnosis of SLE,
( or anything else) judging from the symptoms you list. The main thing about diagnosis from the patient's point of view, in addition to the satisfaction of knowing what is wrong, is getting the right treatment.

It is unlikely that disease modifying meds would be started when there are not enough criteria or other strong indications of some sort of autoimmune connective tissue disease, but that is up to the physician to decide.

Most likely you would be advised to avoid the sun and protect yourself against it and maybe prescribed a steroid cream for occasional use if the appearance bothers you. People aren't treated just because there are antibodies present.
But as I say, that's up to the doctor. There's a limit to how much self diagnosing one can do.

Cheers
Clare
 

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this can get confusing. at least for me it was.
for so many years i thought i didn't get the malar rash because i would get a rash on the nasal folds. it wasn't until later i found that the nasal folds were getting the photsensitivity rash. i get the malar rash too, but sometimes the photosensitive rash would be there at the same time.
for me, the rashes are different looking and feeling.

lesley
 

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Discussion Starter · #6 ·
Lesley

This can sure get confusing about these rashes. No wonder why Rheumy's have a hard time figuring this out.

Does sometimes your malar rash then spare the nasal folds where there's no red?

Mine doesn't change. It always is the same. But I guess if it's a photosensitivity rash, wouldn't the Rheumy know that? Or is that hard to diagnose?

CindyLou
 

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I am wondering what is supposed to be meant by a photosensitivity rash as opposed to the malar rash ?
Rheumatologists rarely have any special knowledge of skin rashes. It is not always possible even for a dermatologist to know what the cause of a rash might be just by looking without further investigation

You need to see a good dermatologist if you really want to pursue this.

Cheers


Clare
 

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Here are some very good illustrations of acute cutaneous/associated with SLE rashes. Image 48 shows very clearly what is meant by sparing the folds between nose and cheeks and the area under the nose although this woman's upper and lower lips are affected. Forehead, eyelids and chin can be affected.

You can even discern that those folds are spared in image 58 although the area between the nose and upper lip is badly affected and just about everywhere else too where there isn't a skin fold, poor soul. I always want to know if they got better.

http://www.dermnet.com/thumbnailIndex.cfm?moduleID=6&moduleGroupID=142&groupIndex=0&numcols=0


Clare
 

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Discussion Starter · #9 ·
Clare

I guess this might be a stupid question on my part but this is so very confusing and I'm just trying to understand all of this.

If I am going to a Rheumy, what is the sense of me going to keep seeing him if I don't really have any answers to a diagnosis. Isn't it just as good if my regular doc just does the bloodwork through the year like what she does?

I guess I don't understand why I need to keep seeing the rheumy once a year. I know people have mentioned that I should already be on meds. If nobody can figure out the rash I have and if the main Lupus test comes up negtive then I'm guessing my opinion is why do I still need to see a rheumy.

I am new to this and it doesn't make any sense?

Any direction in this?

CindyLou
 

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If you are on a rheumatologist's books it is best to stay on them until that person tells you that there is no need at all to come back. You are obviously having some problems and with or without answers it is best to be followed up by someone more specialised than a GP. I love my GP to bits but he does have some weird ideas and lack of knowledge concerning lupus at times so it's great that he works with my rheumy and always calls her if he has the slightest doubt.

I would agree with Clare that you should also go and see a dermatologist. We can't answer all your questions and can only advise you very generally. You need input from the specialists.

Katharine
 

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CindyLou,

I do not see a Rhuemi, but the Immunologist does not really get overly concerned about my rash as I have SLE and was diagnosed by symptoms and bloods (rash did not diagnose me!)!

I will be seeing a dermatologist soon so they will know more, but as I know I have SLE for me it does not matter what is really causing the rash just that creams or meds help it.

You on the otherhand have not yet been diagnosed! If I was in your shoes still I would see both Rhuemi and Dermatologist until I get a satisfactory result one way or the other! I would not stop seeing someone if I instinctively new I did have a problem.

Good luck with whatever you choose to do!

Lesley
 

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The positive ANA at 1:640 titre is the reason why you need to continue to see the rheumatologist. You should also see a dermatologist about the rash you describe. These trained specialists are the ones that will be able to diagnose you, and treat you.

The bigger reason you should do these things is because it is quite likely you have some sort of autoimmune disease that is NOT being treated. Without treatment, you won't get better. In fact, without treatment it is likely you will get worse. With treatment, there is a good chance of some improvement.
 

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It took me 4 rheumatologists, a neuorologist and an infectious disease specialist (who wrongfully diagnosed me with scabies instead of discoid rash) before I found an intelligent doctor who looked beyond just blood results.

If you really want to find out what is ailing you, you should pursue it with another doctor and another and another until you are feeling better. Just because one doc has decided not to look any further, does not mean that there is nothing going on.

I think a dermatologist may assist you, whether or not your rash bothers you...if it is present, they may be able to biopsy it and get some further results.

I know it is frustrating, but dont give up if you really want to get to the bottom of things.

Sharon
 
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