My LUPUS Rashes

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Scleroderma Rash on face in Top pic            Lupus cutaneous discoid rash/porphyric lesion on back of neck. Took 2 months to heal. Oozed clear = white blood cells. Itched at first. January-March 2013

juliearmtwojuliehealingjune2013 juliehalfandhalf juliearmrash june2013rash juliechestrashjuneLupus can cause oversensitivity to the sun’s UV rays.  Abnormal light sensitivity, or “photosensitivity,” is a major feature of both systemic lupus erythematosus (SLE), which can affect any organ or system of the body, and cutaneous lupus, which is mainly limited to the skin.

The two most common forms of cutaneous lupus are discoid lupus erythematosus (DLE) and subacute cutaneous lupus erythematosus (SCLE).  I have both.  Malar rash is the butterfly type rash that goes across the bridge of the nose.  It can be pronounced or mild.  Mine gets redder during periods of lupus activity, or lupus flares.

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March 2012 Lupus lesion on face

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LUPUS Discoid Rash on scalp, turned lesion

Lupus Discoid Rash on chest 2012

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Livedo Reticularis Rash on hand. Also have it on legs. Not always this prominent, legs look “lacy”. It is blood vessel inflammation
julie rash feb 2012

Feb 2013 Discoid lupus rash on back of neck from lupus photosensitivity

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Jan rash healing 2013

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Inflammed blood vessels in neck and brainstem 2012

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Discoid rash on chest healing

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First discoid rash in healing stage 2010

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Arm discoid rash

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Discoid lesion 2012

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ALL RASHES (most)
Rashes Nov 2014
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From the Lupus Foundation of America:

The American College of Rheumatology loosely defines photosensitivity as “a skin rash as a result of unusual reaction to sunlight.” Using this definition, photosensitivity has been identified in one-half to three-fourths of people with systemic lupus.

In people with cutaneous lupus, photosensitivity affects 50 percent of those with discoid lupus and 70-90 percent of those with subacute cutaneous lupus.

How does photosensitivity show up in lupus?

  1. Sunlight can cause new skin lupus lesions (sores).
  2. Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.
  3. Some medications increase the effects of the sun on a person’s body. People with lupus taking these drugsincluding tetracycline antibiotics and many othersmay also very occasionally develop “phototoxic” reactions. These will lead to easy sunburning, so if you are taking these “photosensitizing” medications, you will need extra protection against sunlight. Ask your doctor or pharmacist if any of your current or new medications might make you extra-sensitive to the sun.

12 thoughts on “My LUPUS Rashes

  1. HI, I stumbled upon your blog while searching web for information regarding Lupus skin rashes. After having suffered with recurrent skin rashes for over two years I have recently been diagnosed with Lupus and am currently on plaquenil. This week I am on a family vacation to the beach. I have been very careful to avoid the sun as much as I can while still trying to enjoy my family. I have been wearing the wide brimmed sun hats and sunscreen SPF 100. Apparently my efforts have not been enough. My right arm is broken out and I have a few spots on my left arms. The worse breakout is on my face. I have never had the rash on my face like this. I have red areas under both eyes that are burning like crazy. Just wondering what relief measures you might suggest. Thank you so much for your help. So sorry you have been suffering with this. It is not fun.

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    • If they itch I recommend benedryl otc. You can try something like caladryl lotion but if the rash gets bad you will need steroid cream, a prescription like betamethazone. All rashes which are autoimmune caused will be helped by steroid creams and a regimen of steroids like prednisone. Keep an eye on your rash, stay out of the sun as much as possible and you can try covering up.
      Places like coolibar.com sell UV proof clothing and sun hats.
      Sometimes unfortunately you just have to stay out of the sun. I hope you are enjoying your time with family. HUGS, Julie

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      • Thanks so much for your advice. I did try Benadryl otc but it is not helping much. I am home now and along with the rashes I am running a low grade temp. I understand now that I must completely avoid the sun, not that I am even out it in that much at all. I do work under fluorescents lights that I believe aggravate the rash, so I plan to purchase the UV protective clothing. Although I don’t want to do it, I just might have to go to urgent care tomorrow and get some prednisone if this rash on my face hasn’t improved. This is all so new to me. I know so little….but get this, I am a registered nurse. I have worked in hemodialysis for 18 years, but lupus is out of my realm of knowledge. I appreciate your reply.

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  2. Hi Renita!
    Don’t feel bad ever about not knowing something about lupus (or anything). Lupus is complicated, it’s systemic so we run into all sorts of issues from rashes to kidney, heart and blood problems.
    The Lupus Foundation of America has some great info at their site: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2231&zoneid=523

    I also know of some GREAT support groups. Go here: https://www.facebook.com/groups/lighthouse4lupusCG/ It’s a facebook group-a closed one so I’ll give em a heads up that you are coming. There are a ton of women there with lupus sharing ways to manage things like rashes and the sun, etc. There’s nothing like learning from people who live it every day!

    As far as the sun goes…I’ve come to terms that I’m much better, MUCH better, staying OUT of the sun as much as possible. I shop at night now. You will start seeing an improvement on plaquenil soon I’m sure. Takes about 6 months to kick in.

    Love and HUGS, Julie
    ps. Yeah your right, you need the steroid cream script for sure. And that low grade fever is your tell-tale sign that your lupus is likely active. Stay in and rest as much as possible. 🙂

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  3. Julie this is a wonderful post, SO many things make sense now that my doctors have just been saying “hmm, who knows?” (or some other mumbled non-answer) about for YEARS. I’m sure now I’ve has lupus for 8-10 yrs, despite the drs telling me it was “just fibro” & other things for ages because I was only weakly ANA+. I even had more than one rheumatologist tell me “oh, no no, you can’t have lupus,you’re not skinny. You’re overweight, ALL lupus patients lose lots of weight & get skinny.” (Almost like it was supposed to be an enticement to me to lose weight so I could have lupus -ridiculous!) I haven’t had the malar rash or the big ulcerous lesions like yours, but most of your other pics look like they could have been of me. Anyway,thanks for all the information, and I’m really looking forward to reading more posts in your blog and getting to know you! *hugs!* another Julie (most of my online friends just call me “hg.” ^__~ )

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    • Now hg- that is one I have NOT heard! Not skinny so no lupus? What kind of hack rheumatologist is this? Are you kidding me? Well I’d like to say that now I’ve heard it all but I obviously have a lot to learn! loll! Thank goodness you realize how ridiculous that is.

      I’m going to have to subject you to my Harvard doctor story now. Ok, a group of Harvard alumni physicians got together for a speech and lecture. The speaker addressed the group and told them to raise their hands if they knew of any practicing physicians who were dangerous to patients. Every hand in the room went up.

      At this point if I were you I would call ahead to a rheumatologist’s office and find out how many lupus patients he/she treats. Sometimes the specialist can take care of all RA patients and isn’t familiar with lupus (I’m giving that quack of yours a small pass). Another suggestion I have is that you join a support group-they are the best places for finding comrades in arms to steer you towards good doctors, especially ones that will look at you-the whole picture, and not just your ANA and labs.

      I suggest lifewithlupus.org and fb: https://www.facebook.com/groups/lighthouse4lupusCG/. I’ll let the lighthouse group owner know you might be coming (it’s a closed group). There’s tons of patients in your position and we have all been there..lupus is so hard to dx that even established patients end up defending their condition (and who in their right mind WANTS lupus?) Problem is the ANA is always changing. It is not considered to even reflect disease activity in lupus. A good rheumie knows this. There are other markers to look for like sed rate and complement levels AND of course symptoms.

      The LFA is a great source of info about lupus here: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2231&zoneid=523 and of course there’s my video on the 11 symptoms the ACR uses to dx lupus here: http://youtu.be/iNiXZFmHx-g (where is my modesty?)

      Us lupies have to stick together-and us “Julie’s”, lol. My personal email is jujubeee714@msn.com-write me anytime! It’s a pleasure to meet you-let’s stay in touch. Love, Julie

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  4. Hi, your blog is awesome… Im not sure if anyone has asked this or if you’ve already answered this but i wanted to know what your malar rash feels like and looks up close? just a few days ago my face stated to itch really badly and it was red, then it was dry and flaky, now it looks like malar rash, it is still really dry and flaky. I dont feel any joint pains or other symptoms of lupus.. ThAnks a lot.

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  5. Thank you

    Your rash on your neck is exactly like mine.
    Its been on and off for over a year.
    Puzzled the doctors.

    I have had tests for lupus vut shown up negative. My sister had sle lupus. With complications sadly claimed her in 1993.
    My mum had rhynards and scleraderma sadly claimed her in 1998.
    I find ot difficult to go to the doctors and get to the bottom of me feeling so unwell more on than off. I work very long hours and have 4 children, not much time to go back and forth to the doctors for them to look at me like im just wasting their time.

    I know i have lupus. I seen and lived autoimmune disease in my family for many years.
    When i have a flare up. I get angry, depressed which makes it a lot worse. Then trying to be ok to run my fitness centre and look after my babies.
    I am getting to the end of my teather because im getting ignored by doctors. Just given steriod tablets to clear the rash, steroid cream and antibiotics.
    Maybe i should shpw the picture of your neck, then they would believe me.
    I hope you will keep well. And thank you for sharing.
    Kindest Regards Mirrielle

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  6. You take on ALOT Mirrielle! That kind of stress CANNOT be making managing your symptoms any easier! My advice is to get to a dermatologist when you get a rash-and get it biopsied. I was neg for a few years before a complete lupus panel turned out positive. The titer test did not show positive on me but the more detailed panel DID. A smart dermatologist told me to go see him when I developed another rash (which didn’t take long, lol) and true to his word he did the biopsy and lupus panel. That is how I got diagnosed. With autoimmune disease running so strong in your family I’d think you’d be taken more seriously with your symptoms!

    Idk if a General Practitioner or a rheumatologist shoo’d you away…but they must be seeing something since they treated you with steroids AND the fact that the steroids WORKED is a flag in itself that you have some sort of autoimmune disease. A GOOD rheumatologist does not go by just the ANA test. If you can get in to see another rheumatologist for another opinion, I would. And do NOT give up!

    And btw- the steroids and cream ARE the treatment you’d be given even if you were dx’d for lupus. But you need the underlying disease treated, as you know, with lupus meds like plaquenil, cellcept, methotrexate or even benlysta.

    The 11 symptoms are: (you probably already know all this)
    The “Eleven Criteria”

    Malar rash: butterfly-shaped rash across cheeks and nose
    Discoid (skin) rash: raised red patches
    Photosensitivity: skin rash as result of unusual reaction to sunlight
    Mouth or nose ulcers: usually painless
    Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
    Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
    Neurologic disorder: seizures and/or psychosis
    Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
    Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
    Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
    Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. A special note on the ANA test

    And doctors are like night and day. While one is cautious and stubborn, another is more open so don’t be afraid to keep fighting for your health. Noone else is going to do it for you.

    I wish you the VERY VERY best getting a good doctor! HUGZ, JJ

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