Chat Transcript for Dr. Peter Chira
January 23, 2008
Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Peter Chira.
Peter Chira, M.D., M.S., is an instructor of pediatric rheumatology at Stanford University School of Medicine at Lucille Packard Children's Hospital. He graduated from medical school from Albert Einstein College of Medicine and completed his pediatrics training at Children's National Medical Center in Washington, D.C. and Children's Hospital, Oakland, CA. He did his pediatric rheumatology fellowship at Stanford.
Dr. Chira's research interests focus on improving the transition and educational process for adolescents with rheumatic diseases, including those systemic lupus erythematosus, and evaluating the role of information technology in this transition, with a past project looking at the role of an online chat room support group for teens with rheumatic conditions.
Currently, Dr. Chira is working on a project looking at designing a personal health record for teens with chronic health problems.
We welcome Dr. Chira, and thank him for joining us this afternoon.
Without further delay, let's begin. The first question comes to us from Orlando.
Moderator
Are the symptoms different for a male than a female? I hear it’s worse for a male with SLE. My son has a severe case of SLE, meaning it is affecting his major organs. Thanks.
Dr. Chira
The symptoms of lupus are not different between males and females, but you tend to see lupus more often in girls and women. Before puberty the ratio of lupus is 3-4:1 for F:M, but it increases to 8-9:1 after puberty. When looking at disease severity or complications, gender tends not to be a factor. That being said, our experience at Stanford pediatric rheumatology does seem to echo your concerns that boys may have more substantial organ involvement (i.e. kidneys, brain). Fortunately gender differences do not impact treatment response and disease control.
Moderator
For a young teen newly diagnosed with lupus nephritis, how long does it typically take for the inflammation to subside? She has had chemo for 6 months, and is now on CellCept. The inflammation is now mild, there is some scarring in the kidneys. Also, will the kidneys always be a site of involvement, or is it likely that other sites of involvement will be added to her kidneys? -- Mount Prospect
Dr. Chira
Lupus nephritis, especially diffuse membranoproliferative (Class IV) nephritis, can be one of the complications we most worry about in SLE. Aggressive treatment with immunosuppressive medicines (high dose steroids, cyclophosphamide infusions for 6-12 months, and/or use of mycophenolate (CellCept) have been successful in controlling kidney disease and hopefully put someone into a quiet state. We know that the quicker that someone shows no more signs of kidney inflammation the better, and often it takes at least 6 months (and sometimes more time) to obtain that effect. Unfortunately, we cannot always predict the level of damage with treatment and how long lasting the response will be. For some individuals, the kidney disease will go into “remission” with a controller or maintenance medicine like CellCept and never recur. Others will have that organ relapse, which hopefully then can be brought under control with more medicines.
Moderator
What is the average life span of a 14-15 year old with diagnosis of class 4 Lupus Nephritis left with 20% permanent damage? What meds other than CellCept can be used long term to put/keep in remission? -- Omaha, NE
Dr. Chira
It’s difficult to really give a life expectancy for patients with SLE and class 4 nephritis as our treatment has really changed the face of how well people do with these problems. The first goal is to get the disease under control and prevent the progression to kidney failure (which for most people with class 4 LN we can achieve). As far as long-term immunosuppressive medicines such as CellCept, we know they can be effective in keeping control and maintaining remission, and there is always an issue to know when to come off medicines or not. In our experience, we tend to stay on some form of medicine for class 4 nephritis for at least 5 years since that is the time span people are most likely to flare. If there has been damage already from the lupus, we want to prevent a recurrence which could further damage the kidney. From past patients, we do know that lupus if not well controlled does contribute to increase risk of dying especially if someone goes into kidney failure and so we are very careful about following patients throughout their lives (and getting them seen by an adult rheumatologist when they are old enough).
Moderator
My daughter is 17 and was diagnosed at 15. Gets depressed because her friends don't understand when she's not feeling well, but she won't go to support meetings to meet others, either. Seems like she's in denial most of the time. Is this normal? How to break through? -- Marietta, GA
Dr. Chira
Teens with lupus and other chronic conditions often struggle with dealing with a problem that their peers do not understand, and it is not uncommon to be in denial especially at her age. Much of my research is on trying to improve this process of understanding and coping for teens.
We often try to hook peers with lupus up so they can contact each other and have an opportunity to express frustrations and concerns surrounding their illness and diagnosis, and this does not always have to be in a support group setting but more similar to her normal ways of interacting and socializing (text messaging and IM). While sites like Facebook and MySpace have opened the social sphere for many teens with lupus, we do know that everyone should be careful about the shared information as at times it can be anecdotal or inaccurate especially about miracle treatments or remissions.
Organizations such as the LFA are a great opportunity for teens to meet up, especially if there are events such as fundraising walks or educational sessions that will help your daughter learn more about herself and how to live with lupus.
Moderator
My 7 year old daughter has had two muscle enzyme tests that have come back high. She has periodic dry eye and in her preschool years complained of aches in her hips and legs (We assumed growing pains). I myself was diagnosed with SLE and Sjögren’s overlap two years ago. (My daughter's paternal grandmother has RA.) I've been told there is no connection between my daughter's blood test results/symptoms, and my diagnosis. They are leaning toward a polymyositis for her. Do you have any experience, information or comment regarding maternal autoimmune diseases effect on children? Is this truly just a coincidental "fluke"? What would the prognosis for a child with polymyositis be? Will she grow out of it? Could it develop into RA or a more serious autoimmune disease? -- San Antonio, TX
Dr. Chira
This is a great question. While we know that genetics do play a role in the development of SLE, it really is unclear to what extent. We do see that autoimmunity does run in families and this is why we often ask about other autoimmune issues that could run in a family (Type 1 diabetes mellitus, autoimmune thyroid issues, inflammatory bowel disease, etc.).
While there is no guarantee that a child of someone with SLE will develop an autoimmune disease, we know that the likelihood of a problem developing is higher than someone without that family history. I cannot address the specifics of your daughter, but I would probably say that it was not a coincidental fluke. As far as her diagnosis, as you are aware, time will only tell- sometimes it takes years before we get a clear picture of exactly an autoimmune or rheumatic disease will evolve into and hopefully it will always be mild and controllable. We would recommend seeing a pediatric rheumatologist for your daughter, if possible, as there often are subtle differences between childhood and adult presentations of rheumatic diseases.
Moderator
Since my aunt and I have lupus are the only ones in the family with Lupus. What special evaluation or test do you recommend for my newborn niece considering that there is a genetic predisposition to develop lupus based on our family history? -- Washington, DC
Dr. Chira
Technically, lupus is not entirely determined by genetics only. For instance, we know that identical twins do not necessarily get lupus together – only about a 25% concordance rate. We know there are multifactorial causes for developing lupus and this is why you will hear about infections, sun exposure, hormones, and drugs as potential triggers. We would not recommend routine screening of offspring/relatives of people with lupus because the majority of them will never develop lupus and they may have laboratory findings that cause more concern than reassurance. It is more important to just watch for any signs or symptoms of lupus as your niece gets older (typically, lupus does not present before the age of 6 years), and if there are worrisome issues, then you may want to have her evaluated by a (pediatric) rheumatologist.
Moderator
I'm Siproena and I was diagnosed with SLE at age 5. I am 21 now. They recently caught my years of suicidal depression when a doctor prescribed 50mg 2x daily of prednisone. My confusion was growing over time from meds and I overdosed. Although I have overdosed intentionally in the past this was accidental. Are the children you treat very young, suicidal and also coping with high levels of depression and how have you helped them? Thank you. Sometimes I want to end it all. -- Tacoma, WA
Dr. Chira
We do have children with lupus that were diagnosed as young as you. We know that it is difficult and often frustrating to grow up with a chronic condition like SLE and that the medications or the disease itself can affect your mental state. We take a team approach to these issues of growing up- and we know that teens and young adults need to be included in the team as they get older since they are the ones dealing and living with SLE. Other important individuals are our nurses, social workers, psychologists, and psychiatrists, your regular doctor and other supportive people in your life, and we try to integrate all of them into a patient’s life. Keeping open communication and having a support team (including friends and family) who understands your experiences can help. We always encourage people to seek out help and empower themselves with information.
In treating some of the psychiatric issues you describe, we need to carefully evaluate if it is related to the lupus or not, and often we need to give medicines to help with mood (antidepressants) along with traditional medicines to treat lupus (like prednisone, Plaquenil, and immunosuppressives such as Imuran, mehtotrexate, CellCept, or cytoxan).
Moderator
Hi, my question is will lupus affect the way I look? For example, weight loss? Any of those kinds of things. -- Coral Springs, FL
Dr. Chira
Often lupus can affect your appearance when it is active (such as rash, looking tired, losing hair, or swollen joints), but there are people that have lupus that do not look any different than someone without lupus. Medicines like prednisone (a type of corticosteroid) can have effects on appearance when taken in higher doses, but these go away as you get on a low or no dose of the medicine. Each person is different in how they look, but we have many kids who look the same as they did before they were diagnosed.
Children and teens can have trouble explaining why they look different from their friends and will get teased. We encourage kids to be open with their peers and sometimes have them talk with their class to explain what they are going through. It's helpful to be open and not keep it a secret.
Moderator
How many children are diagnosed with SLE each year and how many are white males like myself? -- Rocky River, OH
Dr. Chira
The number of children diagnosed with SLE is a difficult number to assess, but about 20% of all cases of lupus do start in childhood. While it is true that more females are affected than males, we know that before puberty the ratio is not as high as noted in my previous answer. As for racial and ethnic backgrounds, we do know that SLE can affect all people but in our practice in CA we do see a disproportionate number of kids who are not white. As to exact number of Caucasian boys, I do not have that data, but we have about 5 of about 125 children who are white boys in our clinic.
Moderator
Lupus takes many years to be diagnosed correctly. What is the age of the youngest child diagnosed with lupus? Also, comparing an adult's treatment to a child's, is it basically the same? -- Defiance, OH
Dr. Chira
Often, the diagnosis of SLE is much clearer in children because they may have more severe organ involvement at presentation. As I mentioned before, we do not typically see patients being diagnosed with SLE before the age of 6, but my colleague, Dr. Christy Sandborg has seen a child as young as 1 year old. In our practice now, the youngest child was diagnosed at 4 1/2. In terms of treatment, we typically use what the adults use and make adjustments based on their immune system development and potential side effects.
Moderator
What type of personal health record are you trying to create for teenagers? Is it information technology based?
Dr. Chira
Currently I am working with an art school in LA to help create a personal health record developed specifically based on the needs and behaviors teens exhibit. At this time, we are trying to develop a potential mobile device that will help collect and gather medical, social, educational information that can be shared with your doctor and help with managing your SLE. We are trying to make it IT based and may be a plug-in in someone's MySpace or Facebook page if we can figure out how to keep it private and secure.
Moderator
Dr. Chira ... do you have any final thoughts?
Dr. Chira
I just want to thank you for the opportunity to answer these questions. I encourage everyone- parents and kids alike to ask these same questions with your doctor, and to utilize resources such as the Lupus foundation to help educate yourselves. We need to make sure that more research and time is devoted to helping kids out with SLE as they often are the model patients for future treatments and patient care. Lupus can be a difficult disease for anyone, but we know that for children and teens affected with this disorder it can be more severe and more complicated. We need more pediatric rheumatologists to help manage their care and by your voices, you can make that happen.
Moderator
That is all the time we have for today’s chat. Thank you to Dr. Peter Chira for joining us.
Please join us Wednesday, February 13 at 3 p.m. Eastern for our guest Dr. Amy H. Kao, from the University of Pittsburgh. Dr. Kao will discuss Women’s Heart Health.
Check out the LFA’s blog, located here http://lfa-inc.blogspot.com/.
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