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Old 02-13-2008, 03:13 PM   #1
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how malar rash feels

I'm wondering just what the lupus rash on the face feels like, I'm off to see the Rheumatologist in March after visiting the doctors about severe pains in my stomach, dry eyes, mouth ulcers at least once a month, sore joints, skin allergies (both of my cheeks keep looking like I'm blushing, when I'm hot and people are commenting on this), and being extremely exhausted (keep feeling like I need to sleep like right now, but am not managing to get a full nights sleep because of painful joints, and overheating which can cause me to feel quite sickly). I've had blood tests but the doctor said that they've come back ok, and are not giving any indication as to what is going on. I have hypothyroidism. Someone said about lupus, and I wondered if I could have this, but still have normal blood results?

Last edited by joalrhbe; 02-18-2008 at 03:17 AM. Reason: Not enough information

 
Old 02-19-2008, 05:46 AM   #2
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Re: how malar rash feels

Hi & a big welcome. I checked my lupus hardcover, which says malar rashes tend not to itch and that they spare the nasolabial folds (grooves from nose to outer sides of lips). Two other skin conditions resemble it, rosacea & polymorphous light eruption; so a microscopic exam may be needed to determine if the rash is lupus-specific.

As far as bloodwork goes: very tricky! For starters, bloodwork plays only a PARTIAL role in Dx. Look at the "sticky post" (permanent info post) at the top of the thread list for the standard diagnostic criteria. 4 are skin-related; 4 are systemic problems; and only the last 3 are blood results.

Further, the blood tests are mostly special-order, so you'd have to see your printout to see if these extra tests were even ordered. Plus, results can wax & wane with disease activity. Even more confusing, only two autoantibodies are listed, anti-ds-DNA & anti-Sm; yet there are 16 or more seen in lupus. Only those two made the list, because they're the only two considered highly "specific" to lupus, meaning they aren't seen in OTHER diseases.

The list applies to your lifetime. i.e., you don't have to meet 4 or more *simultaneously* to be Dx'ed with SLE. Think of checking off in indelible ink.

And the list also encompasses lesser "subsets" of lupus. In discoid lupus (DLE), you could maybe meet only one or two criteria. In subacute cutaneous (SCLE), 50% or so meet 4 or more, but they're thought to have lower rates of certain kinds of major organ problems; plus their rashes are often SCLE-specific (there are two distinct SCLE rashes). And there's also a form called drug-induced lupus (DILE).

As for ANA: it's also positive in *other* diseases, or sometimes due to a passing virus or family tendency; so it's also viewed as useful but not definitive. Chances of ANA being positive vary by subset. It's positive roughly 95%+ in SLE, roughly 2/3 in SCLE, and roughly 50% in DLE.

And since you have hypothyroidism, your rheumie will have to determine which of your symptoms are related to it, or to the meds you take for it. Some people have both hypothyroidism & lupus.

I keep re-reading to see if this makes sense! (Dunno. ) In the UK, you could look for books by Dr. Graham Hughes; he's one of the top lupus drs. worldwide. Anyway, I hope you keep posting here & that others chip in soon. Bye for now, with best wishes, from Vee

P.S. I was Dx'ed with SCLE, positive for anti-Ro. Anti-Ro is possible in both lupus AND Sjogren's Syndrome, so it's NOT listed on the criteria list. (Clear as mud, yes?!)

 
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Old 02-20-2008, 03:58 AM   #3
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Smile Re: how malar rash feels

Hi there,

I have a malar rash which i have had since first being diagnosed with SLE. It doesn't 'feel' like anything to me, ie. I don;t have raised lumps on my upper face and it doesn't itch, it is just there as a visible mark on my face.

Vee has given you some extremely informative facts about the rest of your post as well, but I would like to add something about the rashes.

PLE is not normally something that affects the face but is usually a spotty, itchy eruption that appears, and it doesn't come on straight away after exposure. It may take between 5 to 10 days to clear.

The rash usually consists of small red spots or can form into blisters and can appear on any part of the body that has been exposed to sunshine, although commonly the face and the backs of the hands are not affected. It tends to heal without scarring.

It is not the same as *****ly heat as some people think. *****ly heat occurs during warm weather, generally affects the trunk (ie, not the head, neck or limbs) and is usually caused by overheating, particularly in areas where there is friction due to clothing.

Rosacea presents in a totally different way. Many people with rosacea have a history of frequent blushing or flushing. This facial redness may come and go, and is often the earliest sign of the disorder. Persistent facial redness is the most common individual sign of rosacea, and may resemble a blush or sunburn that does not go away. Small red solid bumps or pus-filled pimples can often develop, and burning or stinging may occur. In many people with rosacea, small blood vessels become visible on the skin.

Having said this, this is for your informtion only as I am not able to diagnose obviously but I would think that if you are having symptoms ie. itching or something like that, it would be wise to discuss this with your doctor rather than try to work it out for yourself.

Hope all goes well.

goldenwings
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Last edited by goldenwings; 02-20-2008 at 04:05 AM. Reason: misspelling

 
Old 02-24-2008, 03:46 PM   #4
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Re: how malar rash feels

Hi veej and golden,

veej I referred someone from another board to you, because they had questions about ANA negative possibilities of autoimmune problems. I told them you would be able to answer a few of there questions. Hope you have been doing well, I check in once in awhile but don't always get to post.

golden, haven't seen you on the fibro board much lately and I don't get over here or on the board as much as I would like these days. How are you doing, how is compassionman, tell him I said hello.

Glojer

 
Old 02-24-2008, 05:38 PM   #5
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Re: how malar rash feels

Hiya Glojer,

Just replied to your thread about your thallium test. Hope it's helpful. How is your lupus these days ?

Thanks for asking, Compassionman is doing ok'ish. He stlll hasn't got a job despite trying for no end of positions. I am sure it is age related or they think he is overqualified when he doesn't get the job, he passes all the usual interviews, normally three, but that is as far as it goes. As he says he wouldn't apply for the job if he wasn't willing to do it. He will try anything. I am doing my best to keep him on an even keel, but to have worked all his life and then to be out of work is tough. Financially it is hard for him, he didn;t ge a redundancy package and came away with no money at all. It is a good job I have my own income because we would be completelyl floored without it.

I keep on sending him off on his motorbike just to get out of it all. Also he is going to see his friend in Germany next weekend for a couple of days so that will be good. Wish I could do something like that though, because I feel so stressed with it all, but I don't let him know this of course.

Lovely to speak to you. Take care.

goldenwings
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Old 02-26-2008, 06:25 PM   #6
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Re: how malar rash feels

Golden I hate to hear that he is having such a time. I guess it is the same on your side of the pond. Our daughter was out of work for almost 8 months. She was very qualified as I know compassionman is for several jobs she applied for. She finally found something in the field she studied for in college, but at the bottom of the ladder and pay scale. She continued to apply and would have 2 and 3 interviews for jobs in the field she worked in after college for 10yrs. and was considered very good at, but would never get the job. She now works in her college trained field, which is in activities for the elderly in a private setting and loves it very much, and she and some friends from that field are in the beginning talking stage of opening an intergenerational daycare business for the elderly.

This very long story to tell you to tell compassionman, something will pass his way and although he may not think it is what he wants or will like it may be just the thing to set a spark inside of him and do something he truly loves. I will say some extra prayers for him and for you, I know you have plenty of faith that all will work out. That was hard for our daughter to accept but she just kept believing it and finally, just when she thought they were empty words, it all came together.

Glojer

 
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