One Patient's Positive Perspectives

Upcoming Lupus Teleconference

Upcoming Lupus Teleconference

I would like to heartily recommend this FREE April 18, 2013 teleconference to my blog readers.  Although I will be on an airplane flying home to Arizona from the east coast on the day of the conference, I hope to be able to look it up on the Lupus Foundation web site to download the recorded version and transcript afterward.

Perhaps, I will even be flying through real clouds and fog, instead of the lupus brain fog that I experience so many mornings with my own lupus.

I urge you to register by following the link below if you would like to learn more about cognitive dysfunction and lupus brain fog, from an expert on the subject.

Sincerely,
Lupus Adventurer

Information about the seminar from the North Carolina chapter:

Lupus: Ask the Experts  is a series of live educational teleconferences and pre-recorded webcasts on a variety of topics designed to give you important information about living with lupus. Don’t miss this opportunity to learn from some of the world’s leading lupus experts from the comfort and privacy of your home. Participate in several or just the one that most interests you.Live teleconferences last one hour and are accessible via a toll-free number. Teleconferences will also be recorded and posted online. Pre-Registration is required.  Call-in/log-in information will be provided to all registrants one week before the event.

COGNITIVE DYSFUNCTION: THE LUPUS FOG

Thursday, April 18, 2013 from 7:00 PM to 8:00 PM (EDT)

Michael Parsons, PhD Cleveland Clinic

As many as half of all people with lupus describe feelings of confusion, fatigue, memory loss, and difficulty expressing their thoughts. This collection of symptoms is termed cognitive dysfunction. Learn more about “lupus fog”, its symptoms and treatment options.  Register by Thursday, April 11th.  Click Here to Register

This Ask The Experts series is offered as a free service of the Lupus Foundation of America, North Carolina Chapter.  All costs of services for patients and families are underwritten by the fundraising efforts of the North Carolina Chapter, including the Walk to End Lupus Now™The Lupus Foundation of America, North Carolina Chapter is proud to be a source of information about lupus.  Our comments are based on professional advice, published experience and expert opinion, but do not represent individual therapeutic recommendation or prescription.  For specific information and advice, please consult your physician.

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Comments on: "Lupus Teleconference on Conigitive Dysfunction and Lupus Brain Fog" (7)

  1. […] Lupus Teleconference on Cognitive Dysfunction and Lupus Brain Fog (lupusadventurebetweenthelines.wordpress.com) […]

  2. […] Lupus Teleconference on Congitive Dysfunction and Lupus Brain Fog (lupusadventurebetweenthelines.wordpress.com) […]

  3. Inflammation around the heart, in the pericardium, called pericarditis is a common manifestation of lupus. Similar lupus inflammation in the pleura around the lungs is called pleurisy and can cause sharp stabbing pain when taking in breath. Neither type of inflammation is though to be dangerous on most cases, but can affect a patient in other ways. Pericarditis can affect the heart rate, especially by making it beat very fast, sometimes leading to exhaustion. I have read that only the most extreme Pericarditis can be dangerous, if it squeezes blood supply to the heart.

    I do believe the United States has the best treatment available for lupus. For example, many U.K. and other European insurers are not willing to pay for the new drug Benlysta. In the U.S. there are many clinical trials, and relatively good medical care for poor lupus patients. I am grateful to live here, where I am able earn enough to pay for the best doctors without extreme sacrifice to my family’s budget. I don’t think the money to pay my part of the costs would be easy to earn outside the affluence of the U.S.

    Unfortunately, the economy and affluence of a country has a direct effect on the quality of medical care available, especially in paying for the medications to treat diseases like lupus. The most expensive part of care is the medications, lab tests and possible hospital bills. The cost of a visit to the doctor’s office, even the very best doctors is not so much in comparison. Even of the best doctor is not on the insurance plan, it is the lowest part of annual medical costs.

    About travel with lupus, it is always stress to travel, and that requires extra rest afterward. I also have to avoid any extending walking, or exposure to more than a few minutes of direct sunlight each day, because ultraviolet light in sunlight goes through translucent skin and light clothing and activates lupus antibodies (ANA) inside the body, and activates skin lupus rashes, facial malar rash and rapid skin blistering, even after brief exposure. My sun limit is 15 minutes each day.

    I would like to encourage you to go to the Lupus Foundation of America’s web site at http://www.lupus.org to find out about the 11 diagnostic criteria for lupus. If you have experienced any other possible lupus symptoms, even earlier in your life, consider telling the doctor about them also when you seem him/her.

    I wish the best to you as you face the adventure of getting an accurate diagnosis and treatment plan. Please feel free to ask me any questions that come up, or send me an email to the link on my About The Adventure tab on this blog. LA

  4. also if you have time, can you let me know how is traveling with lupus like for you?

    It has been one of my unfulfilled dreams to travel but was always too busy with work, now I’m afraid I may not have the chance.

  5. Yes, Benlysta does help with my flares, including the one I am being treated for right now. The flares are much less severe, and seem to refrain from involving any of my previous organ involvement. Benlysta seems to moderate lupus, lowering the effective severity. My flare history has been one that I cycled from long flare to long flare with very few periods of partial (only) remission.

    Benlysta is noted for its ability to reduce overall steroid use and dependence. My previous flare treatments usually required large steroid injections (kenalog) and were followed by high dose (60-80 mg prednisone to start off) on a long taper, only to be followed again by another flare.

    Benlysta has moderated the current flare to involve only less serious manifestations of my lupus, such as rashes, joint inflammation, fatigue, mouth and nose ulcers BUT has been sparing any noteworthy escalation or measurable flare in my central nervous system or lungs. Benlysta keeps me healthier, and allows fewer lower dose steroids to move be back to a more stable healthier place.

    The only exception to this history before Benlysta was the five to six years after the clinical trial with Rituxan, which is not available through insurance coverage to most lupus patients — although it is FDA approved for Rheumatoid Arthritis, the auto-immune disease most closely similar to lupus and from which most off-label treatments are shared with lupus.

    Thanks for your question. Are you considering treatment with Benlysta? If you have coverage with your insurance, I would encourage giving it a try. LA

    • b again :) said:

      hi tnx for the long reply. I’m not even diagnosed yet, had a negative ana few months ago, just did another one few days ago while i was having rly low bpm and low blood pressure…they did xray and found the layers of the pericardis were 3 mm seperated, is this an issue with lupus?

      They also found that the lungs were ”hyperactive” but I showed no obstruction on breathing tests…

      Also seeing a reumy on wendesday, they will do a different lupus test.

      I’m actually in Eastern Europe atm, so I suspect the drug will not be available to me through my government run healthcare so I was looking at my options.

      Which country would you say offers the best treatment for lupus patients?

  6. did benlysta help with your flare?

    I was reading your prev posts 🙂

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