PDA

View Full Version : this is weird



widebody
07-07-2009, 08:06 AM
Just diagnosed three weeks ago or so. Have not seen any rash, but have been careful in the sun anyway.

Sunday was cloudy and rainy. Barely went outside.

Yesterday it was cloudy and rainy in the am, then just cloudy in the pm. I was only outside to go to and from my car.

Today, I walked the dog for 1/2 hour at dawn - i mean, it was barely light. Had a (broad-brimmed) hat on, shorts, short sleeves.

My office has fluorescent lights, but they are covered (typical office transluscent plastic sheet)

While shaving, I saw what sure looks (and feels) like malar rash -- there's no butterfly, but there's definitely red bumps across my cheekbone area and it has kind of a (minor) burning-prickling feeling.

Is it 'normal' (i know -- it's lupus -- nothing and everything is normal!) for that little sun exposure to cause a rash? And since I can't see a rheum til end of the month, is there anything i can do about it, besides the hat/sunscreen/vampire lifestyle approach?

Thanks all.

Oluwa
07-07-2009, 09:32 AM
Widebody...

The malar rash on your face maybe triggered by other factors that affect Lupus...stress, insomnia...eats. The malar really isn't a manifestation of the sun, but of Lupus itself. The sun can aggravate it, medicine can cause increased in light sensitivity...but Lupus is the cause. We do the sun protection rules to prevent totally or aggravation of all symptoms.

You could live in the dark, but you would, could still have the malar rash.

Sun protection is to prevent our symptoms from being triggeres, joint pain, fatigue, rashes.

Photosensitivity is another manifestation, feature..symptom of Lupus.

From lupus.org...
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). DLE and SCLE are described in detail below.

How common is photosensitivity in lupus?
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?


Sunlight can cause new skin lupus lesions (sores).

Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.

Some medications increase the effects of the sun on a person's body. People with lupus taking these drugs including tetracycline antibiotics and many others may 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.

Why are people with lupus so photosensitive?
The science of sunlight in lupus is complex and poorly understood.


Several studies over the last 30 years have looked at the role of ultraviolet (UV) light in lupus.

UV light is invisible radiation from the sun. It has a shorter wavelength than the visible light and heat we all recognize.

UV is divided into UVA, UVB and UVC (which does not reach us because it is absorbed by the atmosphere).

In general, UVA mostly ages the skin and UVB mostly burns the skin ("A Ages, B Burns") although UVB also contributes considerably to skin aging and cancer.

Take daily precautions while in the sun, for your whole body....

Do you have any of the rashes and symptoms above mentioned for photosensitivity? You may have that...

Me, while in the sun, I can get rashes on my forearms...my malar becomes brilliant red, increase fatigue and pain...but this year I am able to stay outside longer than before. I still take the same precautions but last year, just a few minutes outside it would make me nauseated, dizzy, rash and pain.

Hope this helps...
Love,
Oluwa

widebody
07-07-2009, 09:49 AM
That's good information. I guess that's what I was really wondering - whether the rash is sunlight-related or can occur from other causes. I worked out pretty hard last night (i refuse to go down without a fight!) and maybe that was enough stress to kick it off.

I really appreciate your helpful post!

iseedeadmonkeys
07-07-2009, 10:46 AM
Hey!

I get a malar rash on my face all year round, like my rhuemy said it doesnt have to be sunny for the rash to come up, im hyper sensetive to sunlight, can get it just from sitting indoors all day.

Like O O said its not just the malar rash i have probs with in the sun, the fatigue and joint pain eats me up, shame really coz our british summer is rather lush this year!

anyway peace out

ISDM

rob
07-07-2009, 10:53 AM
Lupus is strange. Would you believe in 5 years I've never had the malar rash on my face ever? It's never happened. I get it on my arms, under my arms, on my legs and ankles too, but never on my face. But my mother, who was diagnosed with SLE 19 years ago has the facial rash almost all the time. I've always been extremely sensitive to the sun. These days, sun exposure gives me symptoms that resemble the flu. Fever, chills, body aches, it's no fun. I always have my spf one-million sunblock and my boonie hat handy wherever I go, and I stick to any and all shade along the way.

Rob

widebody
07-07-2009, 12:03 PM
yes, lupus is weird -- even weirder than diabetes, i'm finding. I have my new "Tilley" hat which was expensive ($70 for a hat?!) but my wife insisted it was by far the best-looking one at REI. And I've got my sunscreen handy at all times. Big deal here in sunny hot NC

Danica01
07-07-2009, 06:36 PM
Lupus is strange. Would you believe in 5 years I've never had the malar rash on my face ever? It's never happened. I get it on my arms, under my arms, on my legs and ankles too, but never on my face. But my mother, who was diagnosed with SLE 19 years ago has the facial rash almost all the time. I've always been extremely sensitive to the sun. These days, sun exposure gives me symptoms that resemble the flu. Fever, chills, body aches, it's no fun. I always have my spf one-million sunblock and my boonie hat handy wherever I go, and I stick to any and all shade along the way.

Rob

I have never had a rash on my face the entire time like you! I am thankful for that; however, like you, I get horrible,yucky flu pain when I am in the sun and my skin will get blotchy on my legs and arms and itch sooooooooooo bad! It seems I can never put enough sun screan on and livingin the desert does not help!!!!!! Darn sun :grumpy:

rob
07-07-2009, 06:47 PM
I have never had a rash on my face the entire time like you! I am thankful for that; however, like you, I get horrible,yucky flu pain when I am in the sun and my skin will get blotchy on my legs and arms and itch sooooooooooo bad! It seems I can never put enough sun screan on and livingin the desert does not help!!!!!! Darn sun :grumpy:

It's weird, isn't it? Sometimes the itch is on the surface in a group of raised bumps shaped kind of like sunflower seeds-I know, it sounds odd. But other times there's no real surface reaction at all, and the itch seems to come from underneath the skin, from the inside. Like there's pins and needles under my skin. I don't know how much of this is caused by MS, and how much is Lupus. It's maddening sometimes, especially when you just want to sleep.

Monique89
07-07-2009, 08:44 PM
Lupus is strange. Would you believe in 5 years I've never had the malar rash on my face ever? It's never happened. I get it on my arms, under my arms, on my legs and ankles too, but never on my face. But my mother, who was diagnosed with SLE 19 years ago has the facial rash almost all the time. I've always been extremely sensitive to the sun. These days, sun exposure gives me symptoms that resemble the flu. Fever, chills, body aches, it's no fun. I always have my spf one-million sunblock and my boonie hat handy wherever I go, and I stick to any and all shade along the way.

Rob

I have never had it either....it is very strange...

iseedeadmonkeys
07-08-2009, 03:30 PM
You know what?

When i got diagnosed with lupus, my brother also came out in a malar rash! his diagnosis of lupus came back as negative, for someone who didnt go outside either?!?!

So whats that all about i hear you ask?

could it be that he does have a mild version of lupus?

could it be sympathy pains of my lupus (we are so close ppl often think we are twins)

he also came out in a malar rash on sunday....wierd stuff!

ISDM

Danica01
07-08-2009, 10:59 PM
It's weird, isn't it? Sometimes the itch is on the surface in a group of raised bumps shaped kind of like sunflower seeds-I know, it sounds odd. But other times there's no real surface reaction at all, and the itch seems to come from underneath the skin, from the inside. Like there's pins and needles under my skin. I don't know how much of this is caused by MS, and how much is Lupus. It's maddening sometimes, especially when you just want to sleep.

It is so odd and very hard to predict! I know exactly what you mean about the itch underneath the skin. I feel like it is prickly needles poking from under the skin and it hurts and itches!!! I never see any bumps from this yuck but other times I get patches all over my skin and when they go away I have brown spots where the bumps were or even bleaching of the skin. The good thin is this normally fades back to normal over time. It is no fun :no:

lucky7
07-09-2009, 04:03 PM
WOW, its so nice to know it ISNT my imagination! Rob, you nailed it once again!

TobyJug
07-09-2009, 04:15 PM
only about 30% of patients actually get the rash..

anyway welcome to the forum Widebody.... chin up

SandyR
07-09-2009, 07:42 PM
I get the wierd bumps. Usually on my arms and legs. And the beneath the skin itch. It's so annoying. Somtimes I feel like there are spiders walking all over my skin. ewwwwww! I showed the bump rash to the first rheumy I saw. Her words - I'm not that impressed. I was like, excuse me, I am not trying to impress you. I am trying to figure out why the H-E-Double Hockey sticks I have this and it comes and goes and how to get rid of it. :grumpy:

Delphinia981
07-10-2009, 03:29 AM
I get the wierd bumps. Usually on my arms and legs. And the beneath the skin itch. It's so annoying. Somtimes I feel like there are spiders walking all over my skin. ewwwwww! I showed the bump rash to the first rheumy I saw. Her words - I'm not that impressed. I was like, excuse me, I am not trying to impress you. I am trying to figure out why the H-E-Double Hockey sticks I have this and it comes and goes and how to get rid of it. :grumpy:

Preach it, girl!! :owned:

widebody
07-10-2009, 07:46 AM
I've been getting the bumps on my face the last couple of days...not real bad, but definitely visible. And what's strange (well, what ISN'T strange about this disease?!) is that there' s no itch, no prickly feeling, more just like a constant heat. Aveeno skin calming lotion helps a little (not $16/bottle worth, though!!).

On another note, I learned a harsh lesson yesterday -- wore short sleeves, forgot my sunscreen, was outside maybe 5 minutes total and felt like I had the flu. Crikey.