All posts by alupussurvivor site administrator, web designer and founding "Lupus Survivor."

12 Common Signs and Symptoms of Lupus

Share the infographic about the signs and symptoms of lupus:  Systemic Lupus Erythematosus or SLE is a mysterious disease that can affect many parts of the body. It mimics many other illness and often gets diagnosed. There’s no simple test, so doctors must consider many factors in order to conclude a diagnosis. The most common symptoms of lupus include headaches, rashes, hair loss, anemia, blood clots, joint pain, chest pains, mouth and nose ulcers, sensitivity to sun, fingers turning blue from cold, swelling, fever and unexplained fatigue. According to Lupus Foundation of America:

Many of these symptoms occur in other illnesses. In fact, lupus is sometimes called “the great imitator” because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia,

diabetes, thyroid problems, Lyme disease, and a number of heart, levitra soft tabs lung, muscle, and bone diseases. Read full list of common symptoms…

Spread Awareness about Lupus!

Share this Lupus Infographic for signs and symptoms of lupus on Pinterest, Twitter and Facebook

signs and symptoms of lupus

Check out this video for more information on the common signs and symptoms of lupus.  It does a great job illustrating antigens, antibodies and the role autoimmunity plays in lupus.  There is an explanation for the three main types of lupus, discoid, systemic, and drug induced.

Do you have lupus? What signs lead to your diagnosis? Were you misdiagnosed?  How do you manage your symptoms now? Which of the three types of lupus do you have? Please tell us about it below. Thanks for sharing and spreading awareness for lupus!

Are you a Lupus Survivor or family or friend of one?

Be sure to share your Survivor Story.

Benlysta First Lupus Drug History

Share the infographic for benlysta lupus drug history:  It has taken more than a century to develop the first lupus drug. The drug Benlysta was not approved until 2011. It was the first drug to be developed specifically for lupus.  Join the Lupus Foundation of America’s efforts to urge congress to support funding for more lupus research.

Benlysta is an investigational human monoclonal antibody drug and the first in a new class of drugs called BLyS-specific inhibitors. These drugs precios de la viagra prevent b-cell proliferation and development into mature plasma cells with a resulting drop in antibody production. This mechanism of action is very well-suited to Lupus whose pathophysiology is widely thought to involve autoantibody formation. Read More...

Spread Awareness about Lupus!

Share this Lupus Infographic on Pinterest, Twitter and Facebook

lupus drug history

Please give us your comments below. Thanks for sharing and spreading awareness for lupus!

Are you a Lupus Survivor or family or friend of one?

Be sure to share your Survivor Story.

The Burden of Lupus

Share these lupus facts about the burden of lupus:  The mysterious and devastating disease of lupus impacts nearly all facets of life including relationships, daily responsibilities, finances, and simply enjoying life.

Spread Awareness about The Burden of Lupus!

Share this Lupus Infographic on Pinterest, Twitter and Facebook

burden of lupus

Here’s a video from a AJMC TV healthcare series where experts discuss the burdens of having a devastating illnesses such as SLE.  Here Michelle Petri, MD, MPH, discusses the unpredictability and poor quality of life for SLE patients and compares a disabling lupus flare to having full blown


Please give us your comments below. Thanks for sharing and spreading awareness for lupus!

Are you a Lupus Survivor or family or friend of one?

Be sure to share your Survivor Story.

The Impact of Lupus in America

Share these lupus facts about the impact of lupus in America: An estimated 2.5 million Americans have lupus. 90% of patients with lupus are women, but men may get lupus also. 15% of patients diagnosed with lupus are children.

Spread Awareness about the Impact of Lupus!

Share this Lupus Infographic on Pinterest, Twitter and Facebook
impact of lupus in america

Lupus is more

common in women and people of color, especially African Americans. This LFA video discuss how many lupus patients are in our population and differences in regards to race and gender.

Please give us your comments below. Thanks for sharing and spreading awareness for lupus!

Are you a Lupus Survivor or family or friend of one?

Be sure to share your Survivor Story.

Kathleen’s Lupus Survivor Story

lupus survivors imageMy name is Kathleen. I’m living with systemic lupus. I was diagnosed in 2005 with

lupus and have been on Benlysta since 2010. I’m struggling every day with pain, fatigue and worry about my future.
I can’t work anymore because of my disability. But I don’t let it stop me from living my life. I’m into adaptive sports like scuba diving. My insurance has increased 51% in the last two years and it’s been difficult for me on a fixed income . I’m a cancer survivor and I miss driving and I honestly feel that what doesn’t kill me makes me stronger and sometimes I feel like the strongest person in the world. And other days I feel alone and lost. But I have discovered an entire world on Twitter of other lupus warriors and lupus survivors .
I hope to help raise awareness about Lupus and maybe one day there’ll be a cure. I have no family support but I have a service dog named Iris who helps me everyday.

Jennifer’s Lupus Survivor Story

lupus survivors imageI was 19 and in college when I first heard the word lupus. I wasn’t sure how to act or react as my mother and my sister both sat there with tears in their eyes (both of them are nurses and my grandmother passed away at the age of 43 and my mom is only 19 and they think it was for lupus but no one ever told me that back then), so I wondered why they had tears in their eyes when the doctor came in and said that I might have lupus. I was in college getting my degree and neuroscience and was on my way to medical school. Well as the years passed so did my money flares of lupus they came they when they came they went but being so young I wasn’t going to let them stand in my way and I was able to finish my degree but I could not go on to medical school. Then I met my Husband who is a cancer survivor and we have this instant connection that was deeper and life than anyone could know however our dreams of having a child we’re very slim so we traveled the world and did what we could I focused on my career in medicine and finally went back to school and got my degree in medical forensics and ended up working with a well known pharmaceutical company in clinical trials for breast no varying cancer . All through the while keeping my lupus quiet going to flares again and then going in remission and going to flares and going in remission trying to hide it from everybody as if I was a healthy individual who could take on the world. Then I got the best news of my life, I was pregnant! Sadly I was 35 but no less I was pregnant and into thousand seven I gave birth to a healthy baby girl I named her after my mother and my mother-in-law we combined our names to crate her name. So now I had the life… A great husband, A great career in which I was moving up the corporate ladder her and a beautiful daughter. Then one day it all came to a screaming halt! My lupus and taking a turn for the worst I slowly started breaking bones I broke my spine I started breaking my feet started having us have pins and screws in my bones relentless my greens with vomiting every week,pneumonia every 4 to 6 weeks I was in the hospital and then I ended up in ICU I don’t remember much for those couple weeks and I see you but when I did finally come out of the ICU for hog they had told me that I was bleeding in my lungs.& I had been diagnosed with lung disease called interstitial lung disease and then I went into kidney failure in and started having multiple problems with other organs I’m in a permanent adrenal gland organ failure after many years of being on prednisone I had to have a total hysterectomy at the age of 37 I had to go on long term disability which ended up into permanent disability I lost the career of my dreams I lost my self-esteem I Lost myself worth & I saw the toll it was taking on my very young daughter so I try to hide more and more which just led me to become depressed. I am still fighting in and out of the hospital every 4 to 6 weeks was some visits being better than others. I do most of my suffering in silence and I see the financial toll it has taken on our family, I’ve taken out loans against my retirement funds I’ve taken out personal loans going to put us further into and all I really want is for my daughter to have a normal life and a normal upbringing and a normal mom. I’d spend many nights crying a long suffering inside. I am now 43 years old and feel so lonely however I have finally realized I cannot go through this alone anymore. I am now seeing a therapist who is making me realize that if I’m not here then I cannot be here for my daughter. And she’s not worried about the quality of her mom she’s worried about just having a mom and she’s fine with me being just me and some days I realize that and I love to watch her play outside and catch all the beautiful butterflies we have I called them gods luckiest little gift on Earth. I told her I always loved catching butterflies when I was growing up as a girl and that is something that we can have that is ours and that is special and that is incontinent. I lost so many friends along the way and it first I used to grieve that empty hole in my heart as these are my friends since I had since we were nine but I’ve realized over the last 10 years it is more about your family than it is about your friends. And that just because you’ve been diagnosed with lupus doesn’t mean you have to suffer in silence or suffer alone and you don’t have to go to that deep dark lonely place that chronic pain pulls you into rather spend your good days with your loved ones and for now that is what I do I focus on my beautiful daughter and her little daughter flies.

Denise’s Lupus Survivor Story

Hi, my name is Denise I have Lupus (SLE) since 2004, I also have Sjogrens, Raynauds, RA, Diabetes, OA, Neuropathy, DDD, Herniated disk in my lower and upper back, I have sleep apnea too. I have thyroid problems and been having seizure symptoms and TIAs since 04 I was in and out of hospitals because of it. I was on Gabapentin for 6 years and my Neurologist said he, would wean me off it because he thought maybe that was why I was having the symptoms of TIAs and Seizures. Well, he was right I am so glad I got off that medicine I have not been in the hospital for over a year since being taken off that medicine. I have been in and out of a wheelchair since 2003. Since 2011 I have been back in the wheelchair. I buy cheap viagra used to dance ballet and Jazz and tap for 20 years. I fought for SSDI it took two-in-a-half years to get accepted.

In January 2013 I had a Radical Hysterectomy. Because they suspected I had uterine I think of all the changes in my life through the years and sometimes I feel like it is not my life, sometimes I wake up in the middle of the night and think this is a nightmare, but it is not, it is my life. I have had to accept it. Writing helps me accept my life as it is.

I wrote my story to let others know that no matter what you have been through, that you can make a good life for yourself. I share about being abused and being a survivor. I share about my sobriety. I stopped drinking in 1995. I share about finding my birth mom. I share about my loving husband. He is such a sweet heart. My husband and I met before I was ill. Are relationship has been wonderful and very hard because of Lupus, I feel our relationship is growing stronger because we both take time for each other and we listen to each other. Lupus has taught me to communicate and talk things out better. Communication is important; I have a peace in my life today.

I am a Lupus advocate here online. I enjoy sharing with others helping others. Life is short so I feel we should enjoy each other’s company and help each other. God brings the right people into our lives for a reason. To read my story. “Thank you God. One Lady’s Journey Within.”

Here is my new blog Where I share poems and more.
The reason I write is because I want to share with others that no matter how bad our life may have been we can have a good life. We are able to live and be happy. I am so glad to be able to share with you. Denise Love

Carlotta’s Lupus Survivor Story

Susie-Leather-Headshot-2-webI am a Lupus survivor for almost 30yrs. Diagnosed in 1985. Since then, I have also developed FM & Raynaud’s. I am also a cancer survivor having lived through Thyroid Cancer as well as Breast Cancer. While I am a survivor, my cross to bear is the fact that my precious daughter did not survive this disease, succumbing to it at the age of 24 in 1999. So, my survival story is more a story of living my life to honor her, to be someone that she is proud of, and, of

most importance, to helping others who suffer from this disease and any other autoimmune disease.

I run an online support group, where we have been providing support, comfort, information, and understanding to anyone suffering from the 60+ autoimmune diseases. I dedicate many hours to this site, as well as to the sister site on Facebook. Lupus is such a heinous disease and affects each of us differently, my goal is to increase awareness as well as to provide understanding and support.

I pray for a cure, but until then..I pray for pain-free days for each and every one of you!

Angie’s Lupus Survivor Story

lupus survivors imageMy name is Angie and in the 90’s I was diagnosed with Lupus. It was actually very fast. I went to my Primary Care Physician three months in a row with the flu and flu like symptoms. He decided to run some tests and on my follow up appointment he sat me down and said, ” all your lab work is great, excellent but you tested positive for Lupus we also did an EEG let’s get it and look at it.” When he came back he told me everything on the EEG looked great except my theta waves are hitting while I’m awake. I just looked at him for about a minute let it absorb then told him I’m really glad he didn’t do a pelvic exam because everything else is broken. We both laughed and it took the tension out of the room which was a relief. Then he explained what Lupus was and how it would change my life and I started slowing falling down the rabbit hole. When I finally hit bottom I was confused, scared and felt so relieved to know I was [not] actually crazy there was actually something wrong with me. So my PCP (Primary Care Physician) set me up with a rheumatologist. Mistake. You know what I mean if you have ever been to one before. We are the red-headed stepchildren of rheumatology. Especially back then. When I went to the appointment it felt like everything was spinning out of control. The doctor came in asked a few questions but didn’t give me time to answer and didn’t allow me to ask any questions and I had a lot. Then he handed me a script and left. No instructions. No information on side effects. I had no idea what to expect. So I started falling further down the rabbit hole. More like spiraling. Like a good patient, I got the scripts filled. Methotrexate, Plaquenil, and quinacrine. I had no idea what I was getting into. I started taking the medication and here came the rabbit, “Read the directions and directly you will be directed in the right direction.” All I was thinking was It would be so nice if something would make sense for a change. I didn’t need to read the side effects because I had everyone. The medication was worse than the Lupus.

I was working night shift and I always took the methotrexate before I went to bed on Thursday. I had already gone to sleep when the vomiting woke me up. It was so severe I was urinating on myself. I didn’t realize my daughter who was six had stayed home from school because she was sick. She walked into my bedroom and just stood there. In shock. She finally started crying asking mommy what’s wrong with you. At that moment I decided the medication wasn’t worth it. I choose quality over quantity when it came to my life with my children and would make the same the decision again. So I pulled myself out of that rabbit hole and back into the real world. Not realizing what it was doing to my body. Back then most people had never heard of Lupus nor how dangerous and deadly it can be. So I went about my life trying to forget about that rabbit hole. I would have the joint pain and headaches but push through it. The fatigue made daily life extremely difficult but what choice did I have. I had three beautiful babies that depended on me. I went back to my PCP and he wasn’t happy but he gave me a little advice I’ve carried with me. Prednisone, which may make you feel normal again will take years off your life. Stay away from it when you can. I will follow that advice the rest of my life. I am actually one of the lucky ones. Most people go years without knowing what is wrong and by then the damage is done. I at least had a choice. So this is the beginning of my story and how I have learned to live with Lupus.

I am now trying Benlysta. Having some pretty severe side effects today. But I have faith. It will work. It has to work I have severe CNS Lupus with Dementia, meningitis, encephalitis, and cerebritis. So it has to work.