After 22 years as an RN, I now write about medical issues and new medical advances. Diet, exercise, treatment, and lifestyle are important.
Lupus Butterfly Rash
Systemic Lupus Erythematosus
Lupus means "wolf". Erythematosus means "redness". In 1851, doctors thought the facial rash that frequently accompanies lupus looked like the bite of a wolf, thus the name. I've had the "butterfly rash" as I prefer to think of it, which is one of the more classic signs of lupus.
One of the sad aspects of lupus is that it takes months or years for most people to get diagnosed, yet over 50 million people have an autoimmune disease.
There are numerous helpful books. There are many well-known people admitting to suffering from this disease, including Toni Braxton. She has had to give up a lucrative singing career in order to save her life.
Systemic Lupus Erythematosus is one of the autoimmune diseases that causes your immune system to turn against your body. It is a multi-system disease.
Lupus varies greatly in severity in individuals from mild cases with minimal intervention to those with significant symptoms and potentially fatal damage occurs to vital organs, such as the "joints, skin, kidneys, heart, lungs, blood vessels, and brain".
The disease is also characterized by flares of activity interspersed with periods of improvement or remission. It is a difficult disease to diagnose as many of the symptoms are also found in other diseases.
Help Yourself by Learning About Lupus
Common Symptoms Include:
- Malar "butterfly rash" over the cheeks of the face (only affects about 15%)
- anemia ( may be low red or white blood cells or low platelets)
- low-grade fever -over 100 degrees
- chronic fatigue
- arthritis - two or more tender, swollen joints of the extremities
- kidney damage - spilling protein, red blood cells or white blood cell casts into your urine
- pleurisy - an inflammation in the lining of your lungs which causes pain
- pericarditis - an inflammation in the lining of your heart, also very uncomfortable
- alopecia -hair loss
- Sun sensitivity
- Raynaud's phenomenon - an autoimmune disease affecting the circulation of blood in your fingers causing numb, purple fingers
- Brain irritation -causing seizures
- Mucous membrane disorders -ulcerations of the mouth or nose
- Antinuclear antibody-positive ANA blood test
Suggestions for Improved Health
The more symptoms a person has from the above list, the greater likelihood they have lupus, usually 4-7 confirm a diagnosis. There is no one specific test for lupus. The ANA blood test is positive about 97% of the time if you have lupus.
A very good rheumatologist is a must. They are specifically trained in autoimmune diseases. They will do a complete physical, a battery of blood and a urine test to help confirm the disease. You need a good working relationship with your rheumatologist, so that you are comfortable talking with them about any problems you are experiencing. Then, they will get on the right medical regimen for you.
Depression is often a problem found in lupus patients, especially when their symptoms develop slowly for years with there illness or if they go undiagnosed.
If you are in an active disease state, more sleep is required, but poor sleep quality is also a problem, which adds to the fatigue problem. It is a "bone-weary" tired that nightly sleep does not remedy.
Afternoon nap helps many people tremendously. Obviously this is not an option if you are working. You may need to find a way to have some extra down time on the weekends, times outs when possible, and try taking your lunch to work and put your feet up.
The America with Disabilities Act does insure you can request proper lighting at work, as fluorescent lighting is not healthy. A wrist support if you do a lot of computer work is helpful or perhaps a chair that is more comfortable to you. I would certainly suggest you check into what your company might be willing to do to accommodate your disability.
Another helpful consideration is carefully prescribed exercise, which will help maintain your joints and muscle tone, and it provides range of motion for your joints.
Medical Treatment of Lupus
The most exciting new medical treatment for lupus is Benlysta, which was developed by Glaxo/Smith/Kline. It is the first medication that actually treats the disease of lupus versus the symptoms. This medication is used when other medications fail and it is very effective for patients with lupus nephritis. Nausea, diarrhea, and fever are the most common side effects, but the medication promises to be more effective in lupus treatment with fewer side effects than the other medications.
Other commonly used drugs include acetaminophen and NSAIDs, such as Naprosyn, Anaprox, Daypro, Lodine, Indocin, Ralenfen and Voltaren. These are the more minor drugs that relieve acts and pains, including some joint pain and headaches. Plaquenil is also commonly prescribed.
Prednisone is a corticosteroid that suppresses the immune system and is frequently used to treat lupus patients, hopefully for the short term as the long term side effects include cataracts, weight gain, osteoporosis, fluid retention, easy bruising, an increased risk of infections, elevated blood pressure, muscle weakness and gastritis. In higher doses, the side effects are more severe.
Other immune suppressant medications for more serious lupus problems include:
An increased risk of infection is a major risk. Possible side effects include liver damage, decreased fertility, and increased risk of cancer.
Another problem the Lupus Organization explains is the term "lupus fog". It is almost universally known to people with lupus. The phrase reflects the difficulty that you may have in completing once-familiar tasks, such as remembering names and dates, keeping appointments, balancing your checkbook, or processing your thoughts.
Properly termed "cognitive dysfunction" or "cognitive impairment," as this inability to recall information can be extremely frustrating. These symptoms may come and go, but may also be continuous, making school or work difficult or even impossible in extreme cases. People with both lupus and Fibromyalgia are even more likely to experience cognitive problems.
In conclusion, lupus is a complicated disease, which is why a good rheumatologist is so important. It is also important to develop a strong support group within your family and friends.
It is very difficult to get affordable life insurance once you have this diagnosis, despite the fact that most people live a normal lifespan with proper treatment.
While lupus has not been linked to a particular gene, often several people throughout the generations of your family tree may have lupus.
Learn to live within your ability for activity, which means sometimes skipping that shopping trip or cleaning the house perfectly. The most important thing is to find some stress relief, and if you don’t take care of yourself you sure can’t help anyone else.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Pamela Oglesby (author) from Sunny Florida on October 15, 2013:
DanaTeresa, I used to avoid naps also but I found if I take a short nap it makes a big difference. However, if I sleep too long I have trouble sleeping at night. I hope the naps work for you.
Dana Strang from Ohio on October 14, 2013:
THANK YOU SO MUCH for commenting back. I have always avoided naps, but I think I am going to try it. I need to find a way to get through the day.
Pamela Oglesby (author) from Sunny Florida on October 14, 2013:
DanaTeresa, I have lupus and it took a while to get diagnosed, however, I had eight out of the 11 symptoms. Then, I had a kidney biopsy. Unfortunately I have been on prednisone for many years. I have also taken the medications you listed and I could never tell whether plaquenil helped or not.
It is very difficult to treat these autoimmune diseases. I did have all the amalgam removed from my teeth and I believe it helped. I also stay away from foods that create mucus and information, so I don't use any milk products and the eat a lot of vegetables and fruit. As you said some days are much better than others and I have been on numerous drugs over the last 25 years. Lupus finally has a specific drug to treat the disease, but that doesn't help you unless you have the diagnosis.
You might want to try another rheumatologist for second opinion. I recently went to a homeopathic doctor about two months ago and I'm hoping he's going to help. I have never tried one before but I like him, so we'll see. I wish you the best of luck in better health. I find an afternoon nap of about an hour helps me get through the day also. Thank you for your comments.
Dana Strang from Ohio on October 13, 2013:
I have a raging case of fibromyalgia and most likely sjogren's (the blood results are a weak positive but I have all the symptoms. My rheumatologist will not say a definite yes or no about lupus. my bloodwork is "fuzzy" and I only have some symptoms (mainly fatigue and sore joints). She has me on Celebrex, lyrica, and plaquenil. The Celebrex is the only thing I know does anything. I tell her there are days when I have a lot of pain in my hips. All she says is go to physical therapy and take a warm bath. This is all new to me. How did you figure out what works for you? I cant figure out if I am doing too much or not enough. All I know is that I am tired and achy and feel about 80 years old! ... Where can I get some good guidance? (I have a therapist and she seems just as lost)
Pamela Oglesby (author) from Sunny Florida on November 10, 2012:
eagle, I have tried DHEA but am unfamiliar with Pregnenolone, but I will certainly check it out. Now I have other complications however, which are lung disease and adrenal insufficiency due to being on prednisone for so many years. I am going to look up the medication and thank you so much for sharing this information.
eagle45 on November 10, 2012:
I had Lupus 20 blood transfusion,joint pain almost died twice, until I found Pregnenolone I am 58 years old I was grasping at anything I can get my hands on I found DHEA and Pregnenolone the website instructed 200 to 300 Mg for 7 days then move to 50mg a day. The 7th day I was red all over with blood circulating No pain in the joints no muscle pain. I went to the VA app. blood draw I went from 6.5 to whopping 15. It has been a year now I no longer have Lupus. I feel great. I will take 50mg for the rest of my life. My sister says I look 10 years younger.
Pregnenolone is in your skin, eyes, hair, your brain have to have it to function, It is your body immune regulator When levels drop the immune system is out of control, 150 hormones come from Pregnenolone Look it up. thank you
November 10, 2012 1:29 PM
Pamela Oglesby (author) from Sunny Florida on May 10, 2012:
Panda, See if you have any support groups in you area for your disease. You might try massage therapy, biofeedback, meditation and be evaluated for medication to help with your depression. Chronic disease is so difficult to live with. You really have to focus only on those things you can do because it is a huge lifestyle change. I hope you have the support of loved ones also. Stress absolutely makes these types of diseases worse. have learned to not take many things too seriously.
Somehow you need to be able to get out of bed, even if it is just sitting up in an easy chair. Confide your feelings to a friend or a therapist, so you don't hold everything inside. I hope you have a good rheumatologist also. I wish you a better future. These diseases do sometime go into remission, so there is hope.
Panda on May 10, 2012:
Hi Pam im diagnosed with mixed connective diseases,ive been confused a lot fatiged ,loss of sleep ,pain all day every day for years in 2010 i learned about this.also inflammed disc. how does one cope.depressed and hospitalized in2011 of july.because i had anervous break down, the flare ups are so bad ,i stay home in bed a lot need support group help me.
Pamela Oglesby (author) from Sunny Florida on July 16, 2011:
MKTrainum, You certainly have had a difficult time and hope that you have a good rheumatologist. It seems quite often men get really sick with lupus but there is a new drug on the market called the Benesta which actually treat the disease. I don't know if you could get access to the medication is better might be very helpful.
I am an RN also and had to quit work die to omplications of lupus but my husband has stick with me. I am so sorry that you have ended up in a homeless shelter. I appreciate all your comments and I certainly hope that life gets better for you soon.
MKTrainum from Bergen County, New Jersey on July 16, 2011:
I need help....I am a 48 yr old who was diagnosed 15+ years ago. I had no idea at that time, how much my life would change. I was an RN who loved my job.Spent most of my life "helping others". Little did I know my dreams would be shattered...lupus would cause me to lose so much! . It wasn't long before I was unable to work because of being so sick. The stress took it's toll on my marriage and it wasn't long before I had to face the reality that I was unable to care for my own children. As the medical bills increased, so did the financial stress I eventually ended up in a homeless shelter. Now I am the one needing to reach out for help!
Pamela Oglesby (author) from Sunny Florida on February 18, 2011:
teamrn, I agree that Lucas is a very worthy cause to donate to, after all they just came out with the first medicine to actually treat the disease in 50 years. I've written some other hubs about lupus and one of them was where Congress approves some money for research but considering the number of people that have lupus there isn't nearly enough research happening. John Hopkins Hospital in Baltimore is one of the main research hospitals and a good source of information. Thank you so much for your comments.
teamrn from Chicago on February 17, 2011:
I see that most of the comments are more than a year old. Diagnosed w/ SLE about 10 years ago, it was then a minor inconvenience. Now it runs my life with potentially life-threatening problems. Donate clothes, the extra $5 bill that you might save by not going to Starbux one day; donate to the Lupus Foundation, so that there might be a cure for this horrible disease.
theguru-reports from Montana on January 06, 2010:
Play by play description on what we go through here with my wife's illness with Lupus. Thanks for the clear explanation
Pamela Oglesby (author) from Sunny Florida on January 06, 2010:
That is a sad experience as you really didn't even get a chance to say goodbye or find out what truly happened.
callmesplash7 on January 05, 2010:
Thank you Pam! Tomorrow is actually just a consult with the breast surgeon to schedule the biopsy. Everything seems to take forever. As far as my Mother she lived In AZ and I live in the Seattle area so i didn't see her as much as I would have liked to. I din't know all of her symptoms but I do know it seems as though every organ you could have removed she had removed as well as open heart surgery but I actually witnessed her talk the dr's into that one, they said she didn't need it and would be fine with a stint (spelling?) she had been there, done that and wanted a better fix she said. One day she went in for routine hernia surgery and was said to come home the next day. My brother called me from AZ and told me the nurses found my mother in her hospital room ...she had died. I still have no idea why as my brother took it upon himself to cremate her etc. It was a terrible situation, a lot more to that story...
callmesplash7 on January 05, 2010:
When I asked you what exactly lupus was I guess i should have looked at more of your hubs! here it is! :O)
Pamela Oglesby (author) from Sunny Florida on October 29, 2009:
Stephanie, I write about lupus so people will understand that it is a complicated disease. Some people have rather mild cases and some people ultimately die. So often, the person with lupus might look a little tired and pale but not really sick which is one reason others don't understand. Thank you for your comment and I wish your sister the best.
Stephanie from Texas on October 28, 2009:
My oldest sister (I have 4) has had Lupus for as long as I can remember. It was only in the past few months that I started getting information about it and truly educating myself. I think a lot of people, myself included, don't realize the toll Lupus puts on people. Thank you for this hub!
Roberta99 on October 03, 2009:
My daughter has lupus and has had many of the problems listed. This is a good informative article.
Pamela Oglesby (author) from Sunny Florida on October 03, 2009:
Hi Pop, Thank you for supporting the Lupus Foundation. I know this is a serious article, but meant to be informative of all the possible damage Lupus can do in your body. I can't tell you know many times I have been told that "you don't look sick" and yet I was totally exhausted and on pain pills for all the joint pain, etc. Thank goodness there will probably be some new drugs on the market next year, which will be the first new drugs for Lupus in 50 years!
breakfastpop on October 03, 2009:
Great advice, horrible disease. I give all my old clothes to the Lupus Foundation to help them raise money for research.