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Old 08-16-2009, 09:27 PM   #1
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Vee J

Hi, there! Twice now, I've seen you refer to lupus rashes other than malar and discoid. I'm sure I've had both of those, but never went to a doctor so no documentation.

Just curious about these other rashes because many years ago, I had a strange rash that neither a GP or a dermie could dx. It was shaped like ringworm, but flat and not itchy. It was the stangest rash I'd ever seen. It lasted for 1-2 months. Where can I find info on these other rashes?

I'm seeing a rheumie on Friday. BTW... I inquired about The Lupus Book at the bookstore and was told that it is out of print. My local library does not have it. Is it that old???

1tiredmama

 
Old 08-17-2009, 02:56 AM   #2
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Re: Vee J

hi 1tiredmama ... The Lupus Book was on the 4th edition and i dont think it is that old ...

Vee ... i think your earlier suggestion re: sticky post on rashes - you have soooooo much insight here! would be great to share permanently!


PS do you take photos of your rashes? (for documentation)

Last edited by Administrator; 09-15-2009 at 08:21 PM.

 
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Old 08-17-2009, 05:38 AM   #3
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Re: Vee J

1tiredmama, about the targetlike rash you had years back: that's interesting! I'm obviously only a patient, but here's what I've read & experienced.

The rash I had was Dx'ed as SCLE annular form. (SCLE = subacute cutaneous lupus erythematosus.) In immature form, lesions were only red raised papules, like plump mosquito bites but non-itchy. But after some years, the papules would appear, then expand into targetlike circles, with clear skin in the centers. After 1-2 months, as they faded, the rings expanded more, lost perfect circularity, then faded. 3-4 months later, the whole cycle would begin again!

I had some lesions on upper chest & back, but my upper arms were totally covered. I felt the worst as new lesions emerged.

Here's what I was told about SCLE rashes & also have read:

1. In addition to the annular (targetlike) form, there's a second form of SCLE rash called psoriasiform (or papulosquamous), that looks like much like psoriasis (but isn't).

2. For both forms, annular and papulosquamous, the autoantibody most commonly found is anti-Ro; anti-La may/may not be positive. ANA is positive in roughly 2/3 of this subgroup, reaining negative in roughly 1/3, which gave rise to the term "Ro-lupus", to describe those folks who meet the lupus criteria, are positive for just anti-Ro, but yet remain ANA-negative.

3. People with SCLE rashes often meet 4 or more ACR criteria, but some do meet fewer than 4.

4. While patients are "eligible" for the full range of problems seen in classic SLE, it's thought that the odds for the worst problems, kidney & CNS, are lower in SCLE than in classic SLE. Thus in terms of expected severity, SCLE is often viewed as falling somewhere between discoid (meaning skin-only) and systemic lupus.

5. SCLE patients tend to be very photosensitive.

6. I was told that "rashes can cross subsets". This means that people with lupus are "eligible" for rashes typically associated with other subgroups. I'm a good example: in addition to many SCLE lesions, I had a single discoid (but never a malar).

7. SCLE rashes were given their own names/definitions only in the late 1970's, so as compared to malar & discoid, they're "new kids on the block". I *think* they're less common, too: lupus patients with SCLE rashes may only make up something like 10% or so of all lupus patients.

8. Gold standard for rashes wehere lupus is suspected is deep-punch biopsy plus immunofluorescent stain tests, which can fluoresce certain "immune junk" that's built up under the topmost layer of skin.

But obviously I'm just a patient, and what you need are REAL DOCTORS, so please keep seeking answers! Weirdly, many local dermies (I saw at least 6!) seemingly knew only the much-better-known malar & discoid rashes, which left me in limbo for a very long time. Warm wishes, Vee

Last edited by VeeJ; 08-17-2009 at 07:09 AM. Reason: spelling & rephrase

 
Old 08-17-2009, 08:42 PM   #4
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Re: Vee J

Thanks, Ladies! I agree that VeeJ's info should be permanently posted because all one ever reads about is discoids and malars. I never took pics of anything bacause when I had each rash, I considered them a lone benign problem. I wasn't as symptomatic as I am now.

I am, however, photographing my 9 year old daughter's rashes--now that I know. Last summer, she could not be in the sun at all without stinging, burning pain causing her to cry and hide. This year has been fine until we went to the beach. She got a rash on her cheeks, down her jaw, under her chin and on her chest. It was a fine, red, raised, sandpaper-like rash.

She is also having simple partial seizures like I do. I also see her starting to have those sudden overwhelming waves of fatigue. Somedays, at the end of last school year, the sudden fatigue would have her crawling into bed straight from the bus for a long nap. Not many 8 year olds do that.

I don't know if she is affected or not, but I'm documenting so that if she ever needs help, I have proof.

1tiredmama

 
Old 08-17-2009, 09:32 PM   #5
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Re: Vee J

1tiredmama, good luck with your Friday rheumie appt. When you're there, I hope you mention your 9-year-old's rashes, fatigue, & partial seizures, both because her issues are "family history" & to get some advice on how to proceed with her skin reactions, too. Has she been given any formal Dx'es? Is she on meds? (Some meds can actually induce lupus, in which case that's known as "drug-induced lupus", abbreviated DILE. Dr. Wallace covers it in his hardcover. And of course meds can "simply" cause rashes, meaning not lupus rashes.)

You really have a full plate---I'm so sorry. Keep us posted, OK? Bye, Vee

P.S. Here's a quick list of lupus rashes I've collected over time. Some day maybe we can, as a group, do something more useful with the list, with permission from the Board moderators.

localized discoid LE
generalized discoid LE (discoid lesions above & below the neck)
hypertrophic LE (variant form of DLE; maybe same as "verrucous" LE?)
acral DLE (= ???)
tumid LE
lupus panniculitis (= LE profundus. Not a rash, but instead inflamed fat pads.)
SCLE, psoriasiform plaques (looks like psoriasis but isn't)
SCLE, annular polycyclic plaques (targetlike reddish rings with clear centers)
acute cutaneous LE (facial or malar "butterfly erythema)
bullous SLE (a/k/a/ pemphigoid. Fluid-filled blisters. 3 subgroups. Is rare.)
chilblain LE
LE-lichen planus overlap

drug-induced SLE
drug-induced SCLE
neonatal LE (in newborns, becomes apparent after sun exposure)

 
Old 08-17-2009, 09:55 PM   #6
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Re: Vee J

Wow, VeeJ! I googled "annular lupus rashes" and found so many pics! Not only did I see the kind of rash I described earlier, but I was led to pics of mouth ulcers. Sometime during the same year I had the one rash, I got these awful ulcers in the back of my mouth. The pain was unreal. I could only drink milk for nourishment. The ulcers also made all food taste bad. It was horrible! I was told it was herpes which never made sense to me as I have never had a fever blister in all my 40 years! Tonight I found out that if it had been herpes, there would also have been fever blisters present.

Thanks for pointing out that my little girl's problems can be included as family history. I wanted to bring up her issues to show that genetics prove at least a certain number of my symptoms must be related to one another. I wasn't sure how to bring it up, but you're right, it falls under family history.

My little girl is dx'd with bipolar disorder with phychosis. I have unipolar depression. I have read up on med-induced Lupus. Neither of us take any drugs that would induce our symptoms.

You have led me to some very valuable info for Friday's appt. I can't thank you enough!

1tiredmama

 
Old 08-18-2009, 04:04 AM   #7
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Re: Vee J

1tiredmama, I didn't phrase something well earlier, so I'll try again. Dr. Wallace discusses drugs in two categories: drugs that *exacerbate* lupus (meaning one has it already & it's worsened and/or caused to flare) and drugs that *induce* lupus (meaning DILE, which is usually a milder, more self-limiting form).

In the DILE category, he cites certain meds used for blood pressure, for irregular heart rhythm, and some *anticonvulsants* taken by people who have seizures.

After years of striking out, here are things I learned to watch for in a new dr. He/she should take a *lifetime* medical history; if lupus seems a possibility, you should be able to notice him sifting thru the ACR criteria & common symptoms. He should ask about meds taken up to two years prior, or more. If you have skin rashes of any kind, he should direct you to a dermatologist for further tests, not just guess what a rash is by merely looking at it, as no one can do that, not even a dermie! Also, I wanted to convey that there are MANY variants in lupus; I was stunned to learn that.

Let us know how your rheumie appt. goes, OK? GOOD LUCK to you & your daughter on these problems. Hang in there! Warm wishes, Vee

 
Old 08-18-2009, 11:55 AM   #8
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Re: Vee J

Quote:
Originally Posted by 1tiredmama View Post
for Friday's appt.
Good luck! you sound like you are getting you documents in order.

Last edited by Angel MJ; 08-19-2009 at 01:44 AM.

 
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