Newbie here but not to lupus

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Tired Tina
Regular Member


Date Joined Jul 2013
Total Posts : 34
   Posted 7/14/2013 4:13 PM (GMT -6)   
Hi everyone, I am new to the site, very recently diagnosed with discoid lupus. My sister who is 18 months older then I was diagnosed a year or two ago. Long story short, the end of April I developed a rash on my chest back arms ears and head, my dr was treating it as as staph infection. Finally went to the dermatologist a week and a half ago and got the news confused but finally everything I've been going through health wise the past year makes sense now! Looking forward to getting to know people that has dealt with this

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/14/2013 7:35 PM (GMT -6)   
Welcome to HW, Tina.

I suffer from SLE type lupus.

Do you have the photosensitivity, too? You need to stay away from all sources of UV rays (sunlight, fluorescent lighting, CF bulbs, tanning beds, and Halogen).
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Tired Tina
Regular Member


Date Joined Jul 2013
Total Posts : 34
   Posted 7/14/2013 8:23 PM (GMT -6)   
Joy, I go back to the derm tomorrow to get stitches out from biopsies they sent one to mayo, they keep stressing to stay out of the sun:-( this has been very hard emotionally, I garden, camp, and boat a lot :-( I feel crazy, but all my health issues this past year is making sense? Joint pain, tested for carpel tunnel ( hairdresser) easiest test Nero had ever done, numbness tingling ect? Some days I can hardly do my job? :-(

Tired Tina
Regular Member


Date Joined Jul 2013
Total Posts : 34
   Posted 7/14/2013 8:25 PM (GMT -6)   
Also liver enzymes are elevated, test negative for hepatitis but don't know where I will be going from here

Tired Tina
Regular Member


Date Joined Jul 2013
Total Posts : 34
   Posted 7/14/2013 8:28 PM (GMT -6)   
Looks like my original post got messed up :-( my sister has been diagnosed with in the past 2 years now me:-(

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/14/2013 9:33 PM (GMT -6)   
Welcome Tina sorry to hear your have discoid lupus. You'll find a lot of great folks here. We don't have a lot that post who have discoid lupus, most of us have SLE which is systemic but we certainly understand the ups and downs of this disease.

Staying out of the sun is really hard for some people. You need to make sure you wear the highest protection of sunscreen, there is clothing sold that has UVA protection in the clothing. Wearing sun hats help, stay out of the sun during the peak of the day. If, I go outside to sit it's usually in the early evening like around 5 to 6 pm. I normally sit under our maple tree in the front yard.

I normally, don't sit outside though during the summer. It's way to hot and humid here where I live. My lupus has affected my lungs and humidity affects my ability to breath a lot. I'm on oxygen 24/7 anyway, once I'm outside in 80 degree weather with more than 45% humidity I have to turn up my oxygen by at least 2 to 3 liters more.

Avoiding stress with help with your lupus. It will lessen the amount of flares you have and if you Dr. prescribes plaquenil for you it should be fully helping you within 6 months. I'm sorry to hear that your sister also has lupus. Keep coming to the forum and ask any questions you have. Someone is always around to answer questions. Again, welcome and you'll enjoy it here.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/14/2013 11:11 PM (GMT -6)   
I buy my sun protective clothing from coolibar.com and sungrubbies.com.
Coolibar makes a nicer variety of clothing. They even make swimwear.

With it I can spend some extra time outside for errands.

If you're working under fluorescent lighting that can increase your pain and misery.

Correct me if I'm wrong, Lynnwood.....

I heard with discoid lupus your skin is the only thing affected? If the body systems are affected then you may have SLE too.

Ask your Derm if she could recommend a good Rhuemy for you. He can check you out for the SLE.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Tired Tina
Regular Member


Date Joined Jul 2013
Total Posts : 34
   Posted 7/15/2013 1:01 PM (GMT -6)   
Thank you every one, good news my liver enzymes have dropped the a lot, I go back to the derm in a month, and then decide what to do, I do have rheumatoid things going on, she wants to wait and see since the steroid creams helped a ton thank you everyone for your support

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/15/2013 7:08 PM (GMT -6)   
No problem. Be sure to let us know how you're doing.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

twinx57
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 9/2/2013 7:42 AM (GMT -6)   
Hi all,
I find tired tina's post very interesting.I am also new here but not new to lupus symptoms etc.I have just returned from a holiday in Crete and since arriving back in UK I've had a really bad allergic reaction.It was first diagnosed as prickly heat,but then my face,eyes ears etc swelled and have eventually got steroids now to hopefully sort it out.
Like tired tina I have been tested several times for lupus and my bloods keep coming back normal,but on occasion I have had butterfly rash across my nose etc,skin flares like this and lots of other lupus symptom which seem to increase every day!!
I have a diagnosis of fibromyalgia but I feel there is more going on here.However when I last asked for an appointment with rheumatology I was instead referred to pain clinic,which,although I do suffer chronic pain,is not the solution.
Hope I've not gone on too much for first visit,but just relieved to find people that seem to know what i'm talking about!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/2/2013 12:48 PM (GMT -6)   
Welcome, twin.
Make sure to post an introduction thread.

Sorry about the pain clinic thing. It's aggrevating when the doctors don't listen.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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