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Life With Lupus

Not diagnosed but having skin Issues


#1

I recently went to a dermatologist to find out what was going on with my skin and the sun. I have read many posts and blogs about photosensitivity and how each person has differing symptoms. Well for me, when I am exposed to the sun, my skin develops small hive looking bumps but they do not itch. Depending on how long I am in the sun will determine the diameter and the depth. Little exposure gives me raised bumps usually about a millimeter in diameter. Exposure longer than 20 minutes and my skin looks like deep red blotches that are not raised but vary in diameter from 1 millimeter to about 3 to 5 millimeters that do not itch. After being in the sun, the next day I feel like I am getting the flu. I don't have a temp. Then the aches and pains start in my joints and muscles. My stomach starts hurting. I get severe migraines. I can barely walk or lift things. Walking up the stairs is very challenging, among other symptoms. So after visiting the derm. I was told that I have polymorphic light eruption. The derm said that it is not lupus related but it has the same pathology as lupus. Has anyone ever heard this or am I just not educated to this whole lupus thing?


#2

I was told that also until by coincidence rash landed on a birthmark. To be cautious it was biopsied. Biopsy showed tumid lupus. I would ask for biopsy to be sure. I thought my sun issues were unrelated to the joint pain and other symptoms. Now I’m connecting dots. Its hard on every one involved. Invisible to others our pain.


#3

Thanks for your reply. I have started to protect myself.

Ann A. said:

Have you started protecting yourself from the sun? Sun damage is cumulative. People with lupus become more and more photosensitive the longer they live with the condition. In people with lupus exposure to UV can lead to damage to internal organs. So either they learn how to protect themselves from the sun or at some point they get so very sick that they are almost totally housebound and/or confined to their beds. Do you continue to expose yourself to the sun or have started protect yourself?

Once we understand that the sun is our enemy and could destroy our internal organs we tend to start protecting ourselves from it when we go outside.

http://www.lifewithlupus.org/forum/topics/time-to-talk-about-uv-pro...


#4

Thanks for your reply. How long was it before you got the rash? The derm told me they could not do a biopsy as at the time I did not have the rash/hives. They didn't even test me for to see if I was sensitive to the UV light. They just told me they thought I had PMLE.

annie said:

I was told that also until by coincidence rash landed on a birthmark. To be cautious it was biopsied. Biopsy showed tumid lupus. I would ask for biopsy to be sure. I thought my sun issues were unrelated to the joint pain and other symptoms. Now I'm connecting dots. Its hard on every one involved. Invisible to others our pain.

#5

I was misdiagnosed by a well meaning dermatologist. Just to be positive, ask your pcp for the blood test for lupus. Even a negative test can be wrong, so also ask to see a rheumatoid specialist. Just so you cover all things possible. Good luck & I’m hoping for the best for you.


#6

Ok it is lupus related please protect yourself in the sun if possible avoid it as much as possible.It will make you flare really bad most of the time a day after and so on.The heat and sun will puts our bodies into stress and then sickness strikes bad!I was in the sun when I first was told I have lupus in 2003 But I know better now after awhile your body will tell you to Eat good get plenty of rest avoid the sun drink lots of water.If people don’t understand you tell them to research LUPUS trust me only we get it.God bless;-)


#7


Yup the sun exposure from just driving is my biggest issue. I forget to put my gloves on quite a bit. Thank you for giving me hope.


Ann A. said:

I too have had skin manifestations misdiagnosed by several well meaning physicians, including dermatologists. The last time was just a few years ago. I knew that it was a lupus rash as a result of exposure to sunlight. I had accidentally exposed.about two inches of unprotected skin to the sun for about five minutes. Takes months to get an appointment with my rheumie. But my PCP thought it was a fungal infection. When it did not respond to fungicide he referred me to a dermatologist. She scraped the lesions and looked at the scrapings under a microscope. She saw no fungus and she still prescribed a broad spectrum fungicide as the treatment.

I had to go to an immediate care facility and tell them that it was a lupus rash and that I needed blood work asap. My medicine closet has many corticosteroid creams and so I went ahead and gave myself the proper first treatment and sighed at the idea of how someone new to this would suffer dealing with those docs. I also worked on not exposing even a few inches of skin.

I figured out that sometimes when I am out of the house and I wash my hands, I do not do a good job of re-applying sunscreen to my right wrist and when I drive the car that wrist is exposed to the sunlight that comes through the car window. Now the windows are tinted and I wear UV protective gloves.


#8

I just wish all of the doc's would read each others findings so they can connect the dots. Sigh!!!

Jamie Talley said:

Ok it is lupus related please protect yourself in the sun if possible avoid it as much as possible.It will make you flare really bad most of the time a day after and so on.The heat and sun will puts our bodies into stress and then sickness strikes bad!I was in the sun when I first was told I have lupus in 2003 But I know better now after awhile your body will tell you to Eat good get plenty of rest avoid the sun drink lots of water.If people don't understand you tell them to research LUPUS trust me only we get it.God bless;-)

#9


Thanks Jen. I have done at least three rounds of blood work, first starting with my pcp who suspected lupus. some of the test have come back positive, but after going to see the rhumy he is not giving a definitive answer. So it's just a waiting game at this point. I went to the derm. to verify my suspicions on my own lupus diagnosis.
Jennifer said:

I was misdiagnosed by a well meaning dermatologist. Just to be positive, ask your pcp for the blood test for lupus. Even a negative test can be wrong, so also ask to see a rheumatoid specialist. Just so you cover all things possible. Good luck & I'm hoping for the best for you.

#10

I want to thank you all for your responses. I will definitely keep posting my frustrations and my progress.


#11

I’ll have to have my vitamin d levels checked as that has not been done.


#12

Sounds so like me. Last spring I sat outside in a chair reading for about an hour. Nice pretty day and wasn't really worried about getting burnt because it was not feeling lime the sun was so strong. In less than 24 hours I developed an impressive rash on my thighs,knees,arms and upper chest. Mine were like whelps (did not itch) red and raised and very obvious. I also like the next day had chills at work and felt like I had the flu. Upper arms ached, shoulders ached. Next thing I knew I could barely walk. Joints hurt and ached and like my legs were hard to move. I was leaving work a day or so after this started and got stuck in the stairwell because I could get my legs lifted to go down. Even walking across the parking lot was a chore. I had it biopsies, blood work showed elevated antibodies. Went to rheumo and no tests were conclusive for lupus. He said did not mean it wasn't. He said obviously some autoimmune issues. Went back in a month for recheck and was doing ok. The next day a rash came up on my face and I started aching. He started me on a low dose of plaquenil and I felt better in a few weeks. Still achey, fatigued, headaches, and just don't feel well.


#13

Just wrote a reply and then read the one e. My vitamin D levels are low too and I am on prescription Vitamin D.


#14

I tested -12 years ago three or four times my rheumatologist would not give up he was convinced I had lupus. The next rheumatologist told me I did not have lupus now my PCP tested me on her own And got a positive response. Maybe if I had gone again 10 years a go I would’ve gotten the same positive response but now if I get in the sun, and same before I get lumps under my skin red itchy look like hives but they stay in if you rub your hand across them by your finger across them you can feel underneath like lumps. Skin always burns when in the sun even for a minute or two. Since I now have a positive diagnosis I am getting longsleeve shirts to wear over everything including church clothes and hats as well.


#15

I think we’re all very depleted of vitamin D. I think even without a positive diagnosis our bodies tell us the sun is not our friend. I have the exact same reaction you do if I am in the sun for any amount of time. Don’t believe the negative diagnosis. Listen to your rheumatologist. I had so much protein in my urine I had all the symptoms just like you and even though at that time I had a negative ANA, he felt very strongly like it was lupus.