lupus

The most common symptoms of lupus, which are the same for females and males, are:

  • Extreme fatigue (tiredness)
  • Headaches
  • Painful or swollen joints
  • Fever
  • Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
  • Swelling (edema) in feet, legs, hands, and/or around eyes
  • Pain in chest on deep breathing (pleurisy)
  • Butterfly-shaped rash across cheeks and nose
  • Sun- or light-sensitivity (photosensitivity)
  • Hair loss
  • Abnormal blood clotting
  • Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
  • Mouth or nose ulcers

How many signs and symptoms of lupus do you have?  I have had pretty much all of these at some point or another and sometimes all of them combined at the same time.  Ugh.

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The Lupus Foundation of America and Eli Lilly and Company released results from a new survey that sheds light on the lupus journey and the challenges not only for those living with lupus, but also for lupus caregivers. The UNVEIL study, which involved over 1,000 people with lupus and lupus caregivers, highlights the devastating impact lupus has on all aspects of life including family, work, finances, treatment experiences and overall quality of life.

“Throughout the course of their disease, people with lupus experience significant symptoms such as pain, fatigue, depression, cognitive issues and physical impairment that impact every facet of life,” explains Sandra Raymond, president and chief executive officer of the Lupus Foundation of America. “Despite these devastating complications, lupus can be hard for others to see because there may be no visible symptoms. The UNVEIL survey provides the public an opportunity to see how life can be interrupted by lupus and why we need everyone’s help to fight this cruel disease.”

The Lupus Journey Often Begins With a Long, Complicated Path to Diagnosis:

  • On average, it takes nearly six years for people with lupus to be diagnosed from the time they first notice their lupus symptoms.
  • A majority of people with lupus surveyed (63 percent) report being incorrectly diagnosed. Of those reporting incorrect diagnosis, more than half of them (55 percent) report seeing four or more different health care providers for their lupus symptoms before being accurately diagnosed.

The Severe Impact of Lupus Proves A Challenge to Treat:

  • On average, people with lupus surveyed take nearly eight prescription medications to manage all their medical conditions including lupus.
  • Of the 23 percent of people with lupus who experience severe lupus flares all or most of the time over the last three months, 40 percent were admitted to the hospital at least once during the past 12 months, with an average stay of 10.5 days

Lupus Interrupts Every Facet of Life

Work-life

For the majority of people with lupus surveyed (89 percent), lupus impacts their work life.

  • More than half (55 percent) of people with lupus surveyed whose work is affected are working part-time, intermittently or are unemployed because of lupus.
  • Almost three-quarters (74 percent) of caregivers report that caring for someone with lupus has an impact on their work productivity.A large proportion (41 percent) of caregivers surveyed are only able to work part-time or intermittently, or are unemployed, with nearly half (45 percent) of those indicating caregiving responsibilities being the reason. In addition, 60 percent note they spend 16 or more hours per week helping loved ones with lupus.

Family life/Daily Living

  • More than 75 percent of caregivers surveyed help a loved one with lupus with daily activities, such as cooking, shopping, household chores and providing financial help.
  • Eighty-four percent of people with lupus surveyed indicate they feel they are a burden to their family and friends due to their inability to perform daily activities. In addition, 94 percent indicate that lupus interferes with their ability to enjoy life.
  • Nearly three in four people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities. For caregivers, nearly half surveyed (49 percent) replied that caregiving responsibilities impact their ability to socialize with friends.

Mental Health

  • The majority of people with lupus surveyed feel anxious (90 percent) and depressed (85 percent) due to their lupus.
  • More than 94 percent of caregivers surveyed experience increased anxiety and stress in relation to their caregiving, worrying that their loved one with lupus will become sicker.

“Lupus goes well beyond joint pain and fatigue. For me, it has derailed my life and impacted not only me but everyone around me,” said Wendy Rodgers, a California woman living with lupus. “Initiatives like this take us one step closer to helping the public better understand the needs of people with lupus, as well as those who care for loved ones with the disease. The more people know about lupus, the better support there will be for those living with the disease and the sooner we can conquer it.”

 

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Technically lupus myelitis is transverse myelitis that is caused by lupus.  This is one of the disorders that I came down with, so I thought I’d share a little bit more.

Transverse myelitis is a disorder of the nervous system linked to inflammation of the spinal cord. It is very rare, affecting approximately 1% of patients with lupus.

Initial symptoms usually include localized lower back pain, sudden paresthesias (abnormal sensations such as burning, tickling, pricking, or tingling) in the legs, sensory loss, and paraparesis (partial paralysis of the legs). Paraparesis may progress to paraplegia (paralysis of the legs and lower part of the trunk). Urinary bladder and bowel dysfunction is common. Many patients also report experiencing muscle spasms, a general feeling of discomfort, headache, fever, and loss of appetite.

As with many disorders of the spinal cord, no effective cure currently exists for people with transverse myelitis. Treatments are designed to reduce spinal cord inflammation and manage and alleviate symptoms.. Physicians often prescribe anti-inflammatory corticosteroid therapy soon after the diagnosis is made in order to decrease inflammation and hopefully improve the chances and speed of neurological recovery.

Commonly experienced permanent neurological deficits resulting from transverse myelitis include severe weakness, spasticity (painful muscle stiffness or contractions), or paralysis; incontinence; and chronic pain. Such deficits can substantially interfere with a person’s ability to carry out everyday activities such as bathing, dressing, and performing household tasks.

Recovery from transverse myelitis usually begins within 2 to 12 weeks of the onset of symptoms and may continue for up to 2 years (and in some cases longer). However, if there is no improvement within the first 3 to 6 months, complete recovery is unlikely (although incomplete recovery can still occur, which underlines the significant need for aggressive physical therapy and rehabilitation).

Transverse myelitis that is related to lupus may relapse once treated, so you should work with your doctor to track and manage any symptoms you may have.

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New findings by a biomedical engineer and his team at the University of Houston (UH) raise hope for a new class of drugs to treat lupus that may not include the long list of adverse risks and side effects often associated with current treatments for this disease.

In this latest research, doctors present new findings that detail the use of a synthetic, plant-derived compound – abbreviated CDDO – that was shown to effectively suppress the multiple steps of lupus development in murine (aka lab rats) models, including the onset of kidney disease.

There is much left to be discovered about CDDO, including how it works in suppressing the progression of lupus. The next step for this research is to confirm whether the CDDO compound suppresses the immune system across the board, or whether it simply suppresses the activation of the specific signaling pathways that lead to the development of lupus. To find this out, the group will test it in the lab to see if they can mount the proper immune response. If not, Mohan says the compound likely could be suppressing the entire immune system, which is the current problem with using steroids to treat lupus. Even if the compound is shown to be generally immunosuppressive, however, it still may be a better treatment option than steroids for some patients.

“The most exciting part of this research is that CDDO is originally plant-derived, so it’s relatively natural and carries less chance of side effects,” Mohan said. “That’s a very important point, because many of the current therapeutic agents being used for lupus have significant side effects. As far as we have tested in these experiments, we found that the CDDO compound had no known side effects. Additionally, compared to many other test compounds we’ve previously tried for treating lupus, this one appears to be much more effective.”

Read the article here: Findings give hope to plant extract as possible lupus treatment.

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A study published in Scientific Reports showed promise that the antibodies in patients with lupus could prove beneficial in battling cancer cells “with deficient DNA repair mechanisms.”

“Patients with lupus make a wide range of autoantibodies that attack their own cells and contribute to the signs and symptoms associated with lupus,” noted James E. Hansen, an assistant professor of therapeutic radiology at the Yale School of Medicine, in a statement from the school. “Some of these antibodies actually penetrate into cell nuclei and damage DNA, and we suspected that we may be able to harness the power of these antibodies for use in targeted cancer therapy.”

During their research, the team discovered antibodies could help work with those damaged cells to fight the patient’s cancer. They reported that a specific antibody called 3E10 “inhibits DNA repair and sensitizes cancer cells to DNA damage.” The study also showed that “the DNA-damaging lupus antibody 5C6 is toxic to DNA repair-deficient cancer cells.”

The study was supported in part by an American Cancer Society Institutional Research Grant.

Read more about it here:  Lupus Plays Unlikely Role as Ally in Cancer Fight.