Biologics and Systemic Vasculitis - YouTube
Showing posts with label immune suppression. Show all posts
Showing posts with label immune suppression. Show all posts
Tuesday, August 9, 2011
Biologics and Systemic Vasculitis - YouTube
Dr Philip Seo, Co-Director of the Johns Hopkins Vasculitis Center, was interviewed at the 27th Annual Congress of Clinical Rheumatology (May 12-15, 2011) in Destin, Florida. The video interview was conducted by Global Medical News Network (GMNN), a medical news wire service (formerly known as Elsevier Global Medical News). He had the following to say about biologics, and specifically about Rituximab.
Biologics and Systemic Vasculitis - YouTube
Biologics and Systemic Vasculitis - YouTube
Wednesday, September 8, 2010
Antibacterial Products: Can You Be Too Clean?
Here is another article that rang my bell with the flu season coming up.
Here are my own two cents on this topic...
My own experience with the, "Can you be too clean?" question came in the early days of Meaghan's diagnosis. I was trying to figure out the exact percentage of her immune compromise, then I was quickly made to understand that there is no way to know that for sure with any precision, and even if you could, it changes depending on other variables. Even without an autoimmune disorder, or taking prescription medications that suppress the immune system, every person is unique. Your "healthy baseline" is going to be different from every other human being.
So, the best advice we got was to follow the best advice we all get for staying healthy:
I pressed further and finally got some doctors to admit that in fact, if I protect Meaghan too much, then her natural immune system will suffer. Some researchers have suggested the immune system needs to be provoked in order to stay strong. Basically, if a person is too well protected from germs, and never has the chance to stimulate their immune system with enough crap to keep it worked out and healthy, then they are actually more likely to get sick. [The paraphrasing is my own.]
So what I took away from all that was that we should protect ourselves, but not too much... So it remains a balancing act.
Here is a good definition of "autoimmunity" you can use to describe it to others:
"The immune system can suddenly turn on itself and target its own organs, tissues and cells for destruction: what we call autoimmunity. Most of the more than 70 distinct types of autoimmune diseases are rare, but collectively they affect millions of individuals worldwide." (Editorial: Unraveling Autoimmunity, Nature Immunology 2, 755 (2001) or doi:10.1038/ni0901-755)
You can request this document from a number of document delivery services
You can also request this document from your local library through inter library loan services.
CVSCaremark Health Resources
"Antibacterial Products: Can You Be Too Clean?
by Elissa Sonnenberg, MSEd
In a world full of runny noses and hacking coughs, products with labels like "antibacterial" and "antimicrobial" regularly dispense hopes of germ and illness-free lives to their users. But, as the variety of germ-fighting products continues to rise, medical experts continue to disagree over their benefits and potential long-term effects."
Click this line to see the full article. (If you are reading this from the mailing list, you will need to go to a browser and read it in the blog. This link is HUGE.
My own experience with the, "Can you be too clean?" question came in the early days of Meaghan's diagnosis. I was trying to figure out the exact percentage of her immune compromise, then I was quickly made to understand that there is no way to know that for sure with any precision, and even if you could, it changes depending on other variables. Even without an autoimmune disorder, or taking prescription medications that suppress the immune system, every person is unique. Your "healthy baseline" is going to be different from every other human being.
So, the best advice we got was to follow the best advice we all get for staying healthy:
- Wash your hands and use antibacterial rinses when you cannot.
- Stay away from sick people
- When you get sick, stay home and get better as quickly as possible
- Lots of rest and fluids, especially water
I pressed further and finally got some doctors to admit that in fact, if I protect Meaghan too much, then her natural immune system will suffer. Some researchers have suggested the immune system needs to be provoked in order to stay strong. Basically, if a person is too well protected from germs, and never has the chance to stimulate their immune system with enough crap to keep it worked out and healthy, then they are actually more likely to get sick. [The paraphrasing is my own.]
So what I took away from all that was that we should protect ourselves, but not too much... So it remains a balancing act.
Here is a good definition of "autoimmunity" you can use to describe it to others:
"The immune system can suddenly turn on itself and target its own organs, tissues and cells for destruction: what we call autoimmunity. Most of the more than 70 distinct types of autoimmune diseases are rare, but collectively they affect millions of individuals worldwide." (Editorial: Unraveling Autoimmunity, Nature Immunology 2, 755 (2001) or doi:10.1038/ni0901-755)
You can request this document from a number of document delivery services
- British Library Document Supply Centre (http://www.bl.uk/services/listings.html)
- CIST Canadian Institute for Scientific and Technical Information (http://cisti-icist.nrc-cnrc.gc.ca/eng/ibp/cisti/faq/document-delivery/cisti-infotrieve-collaboration.html)
- Infotrieve (http://www4.infotrieve.com/default.asp)
- Thomson ISI Document Delivery (http://www.thomsoninnovation.com/ti/workflow/docdelivery/)
You can also request this document from your local library through inter library loan services.
New Therapy For Vasculitis Expected To Help Patients Avoid Infertility And Cancer
Hello Folks,
This is not exactly new news, but I found this article to be more easily understood than most in terms of answering the question, What is the difference between Cyclophosphamide and Rituximab?
Here you go.
This is not exactly new news, but I found this article to be more easily understood than most in terms of answering the question, What is the difference between Cyclophosphamide and Rituximab?
Here you go.
New Therapy For Vasculitis Expected To Help Patients Avoid Infertility And Cancer
http://www.sciencedaily.com/releases/2009/10/091018141723.htm
ScienceDaily (2009-10-17) -- Researchers have identified that Rituxan, a drug previously approved for the treatment of non-Hodgkin's B cell lymphoma and rheumatoid arthritis, can treat severe ANCA-associated vasculitis as effectively as cyclophosphamide, the current standard therapy.
Friday, August 20, 2010
WHO Declares End to 2009 H1N1 Influenza Pandemic
The good news is the swine flu pandemic is officially over. (Read the press release below.)
As you all read this, remember that flu season is coming up. Alert your primary care physician to reserve your vaccine. Be sure to tell them you need the inactive vaccine (the shot, not the spray), and ask them to call you when the new flu vaccine becomes available. In case they are in short supply, immune supressed patients and their caregivers are high priority recipients for flu vaccine. Be polite, but you are eligible to receive the vaccine early.
I will say it one more time, just to make sure you all know. Immune suppressed patients and their caregivers, should NOT accept the live FluMist vaccine. That is the one they spray in your nose. The potential for catching an opportunistic infection in immuned suppressed prohibits the use of live vaccines.
For more information on this topic for autoimmune patients, see: http://www.flu.gov/individualfamily/healthconditions/arthritis/index.html
This information is neither intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with questions regarding a medical condition.
Here is the press release announcing the end of the so-called "Swine Flu."
News Release
FOR IMMEDIATE RELEASE
Tuesday, August 10, 2010
Contact: HHS Press Office
(202) 690-6343
WHO Declares End to 2009 H1N1 Influenza Pandemic
On August 10, 2010, the World Health Organization (WHO) International Health Regulations (IHR) Emergency Committee and the WHO Director-General, Dr. Margaret Chan, declared an end to the 2009 H1N1 influenza pandemic. This declaration was based on strong indications that influenza, worldwide, is transitioning toward seasonal patterns of transmission.
In the majority of countries, out-of-season 2009 H1N1 outbreaks are no longer being observed, and the intensity of 2009 H1N1 influenza virus transmission is lower than that reported during 2009 and early 2010. Members of the Emergency Committee further noted that the 2009 H1N1 viruses will likely continue to circulate for some years to come, taking on the behavior of a seasonal influenza virus.
This does not mean that the H1N1 virus has disappeared. Rather, it means current influenza outbreaks including those primarily caused by the 2009 H1N1 virus, show an intensity similar to that seen during seasonal epidemics. Pandemics, like the viruses that cause them, are unpredictable. WHO noted that continued vigilance is extremely important, and it is likely that the virus will continue to cause serious disease in younger age groups and pregnant women, at least in the immediate post-pandemic period.
The WHO Director-General ended the Public Health Emergency of International Concern in accordance with the International Health Regulations (2005). More information about the WHO declaration is available on the WHO website at http://www.who.int/mediacentre/news/statements/2010/h1n1_vpc_20100810/en/index.html.
Implications for United States
This is a formal WHO declaration regarding the end of the pandemic at the global level. The U.S. Public Health Emergency determination for 2009 H1N1 Influenza expired on June 23, 2010.
The only impact on the United States resulting from the WHO declaration will be a cessation in weekly reporting under the International Health Regulations (IHR) to the Pan American Health Organization and the World Health Organization. CDC has reported weekly to IHR since early in the pandemic.
There are no changes for the United States in terms of CDC’s recommendations for the upcoming influenza season and the United States is already proceeding with the understanding that the 2009 H1N1 virus is now part of seasonal influenza virus circulation.
As is customary, beginning in October, 2010, CDC will provide weekly reports of influenza surveillance information throughout the season with the publication of FluView available at www.cdc.gov/flu/weekly .
Protecting Yourself and Others from Influenza
CDC recommends a three-step approach to fighting flu: vaccination, everyday preventive actions and the correct use of antiviral drugs if your doctor recommends them. The first and most important step in protecting against the flu is to get a flu vaccine each season.
The U.S. 2010-2011 influenza vaccine will protect against an H3N2 virus, an influenza B virus, and the 2009 H1N1 influenza virus that caused the first global pandemic in more than 40 years and resulted in substantial illness, hospitalizations and deaths. In the United States, the CDC’s Advisory Committee on Immunization Practices recently recommended that everyone 6 months of age and older be vaccinated against influenza each season. Pregnant women, young children, and anyone with underlying health conditions like asthma, diabetes and neuromuscular diseases are at especially high risk for influenza-related complications and, therefore, should be vaccinated as soon as vaccine becomes available. Vaccine manufacturers are predicting an ample supply of influenza vaccine for the upcoming 2010-2011 U.S. influenza season.
Influenza (the flu) is a serious disease that can lead to hospitalization and sometimes even death. Anyone can get sick from the flu. For more information about influenza and how to protect yourself and your family, visit www.flu.gov.
###
As you all read this, remember that flu season is coming up. Alert your primary care physician to reserve your vaccine. Be sure to tell them you need the inactive vaccine (the shot, not the spray), and ask them to call you when the new flu vaccine becomes available. In case they are in short supply, immune supressed patients and their caregivers are high priority recipients for flu vaccine. Be polite, but you are eligible to receive the vaccine early.
I will say it one more time, just to make sure you all know. Immune suppressed patients and their caregivers, should NOT accept the live FluMist vaccine. That is the one they spray in your nose. The potential for catching an opportunistic infection in immuned suppressed prohibits the use of live vaccines.
For more information on this topic for autoimmune patients, see: http://www.flu.gov/individualfamily/healthconditions/arthritis/index.html
This information is neither intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with questions regarding a medical condition.
Here is the press release announcing the end of the so-called "Swine Flu."
News Release
FOR IMMEDIATE RELEASE
Tuesday, August 10, 2010
Contact: HHS Press Office
(202) 690-6343
WHO Declares End to 2009 H1N1 Influenza Pandemic
On August 10, 2010, the World Health Organization (WHO) International Health Regulations (IHR) Emergency Committee and the WHO Director-General, Dr. Margaret Chan, declared an end to the 2009 H1N1 influenza pandemic. This declaration was based on strong indications that influenza, worldwide, is transitioning toward seasonal patterns of transmission.
In the majority of countries, out-of-season 2009 H1N1 outbreaks are no longer being observed, and the intensity of 2009 H1N1 influenza virus transmission is lower than that reported during 2009 and early 2010. Members of the Emergency Committee further noted that the 2009 H1N1 viruses will likely continue to circulate for some years to come, taking on the behavior of a seasonal influenza virus.
This does not mean that the H1N1 virus has disappeared. Rather, it means current influenza outbreaks including those primarily caused by the 2009 H1N1 virus, show an intensity similar to that seen during seasonal epidemics. Pandemics, like the viruses that cause them, are unpredictable. WHO noted that continued vigilance is extremely important, and it is likely that the virus will continue to cause serious disease in younger age groups and pregnant women, at least in the immediate post-pandemic period.
The WHO Director-General ended the Public Health Emergency of International Concern in accordance with the International Health Regulations (2005). More information about the WHO declaration is available on the WHO website at http://www.who.int/mediacentre/news/statements/2010/h1n1_vpc_20100810/en/index.html.
Implications for United States
This is a formal WHO declaration regarding the end of the pandemic at the global level. The U.S. Public Health Emergency determination for 2009 H1N1 Influenza expired on June 23, 2010.
The only impact on the United States resulting from the WHO declaration will be a cessation in weekly reporting under the International Health Regulations (IHR) to the Pan American Health Organization and the World Health Organization. CDC has reported weekly to IHR since early in the pandemic.
There are no changes for the United States in terms of CDC’s recommendations for the upcoming influenza season and the United States is already proceeding with the understanding that the 2009 H1N1 virus is now part of seasonal influenza virus circulation.
As is customary, beginning in October, 2010, CDC will provide weekly reports of influenza surveillance information throughout the season with the publication of FluView available at www.cdc.gov/flu/weekly .
Protecting Yourself and Others from Influenza
CDC recommends a three-step approach to fighting flu: vaccination, everyday preventive actions and the correct use of antiviral drugs if your doctor recommends them. The first and most important step in protecting against the flu is to get a flu vaccine each season.
The U.S. 2010-2011 influenza vaccine will protect against an H3N2 virus, an influenza B virus, and the 2009 H1N1 influenza virus that caused the first global pandemic in more than 40 years and resulted in substantial illness, hospitalizations and deaths. In the United States, the CDC’s Advisory Committee on Immunization Practices recently recommended that everyone 6 months of age and older be vaccinated against influenza each season. Pregnant women, young children, and anyone with underlying health conditions like asthma, diabetes and neuromuscular diseases are at especially high risk for influenza-related complications and, therefore, should be vaccinated as soon as vaccine becomes available. Vaccine manufacturers are predicting an ample supply of influenza vaccine for the upcoming 2010-2011 U.S. influenza season.
Influenza (the flu) is a serious disease that can lead to hospitalization and sometimes even death. Anyone can get sick from the flu. For more information about influenza and how to protect yourself and your family, visit www.flu.gov.
###
Wednesday, October 21, 2009
About Swine Flu -- Booga Booga!
There is much buzz going around about the swine flu these days. Mostly it is a big fat scary question mark for most people. Should I get vaccinated? What happens if I get it? Will it kill me?
First my personal disclaimer...
I am NOT an expert. However, I also have these same concerns, so in keeping my ear to the ground I have a discovered a couple of answers I can share with you. Just my perspective and I am sure others may differ, so make up your own minds. You are responsible for you.
Here goes...
What is swine flu?
In case you did not know, there are other variations of H1N1 in the normal annual vaccine, but this new one so called "swine flu" aka "2009 H1N1" aka "" is genetically unique enough to be unaffected by the regular seasonal flu vaccine and so requires special attention.
How widespread is the flu pandemic?
The outbreak of H1N1 is very widespread. It is affecting people all over the country. No matter who you are, by now, you probably know people who have it, or who have had it in their family. You can look at the map, but it is pretty dull, since the entire thing is the same color. That means it is everywhere. This is what a pandemic looks like:
What happens if I get the swine flu?
What happens if you get swine flu it is you get the flu symptoms. I mean you have had the flu before, right? If you have never had the flu, then perhaps you should write an article about healthy living. See the symptoms:
So, if you normally get off easy, you might still, and if you do get sick, you may notice it more.
If you normally get your ass kicked by the flu, then be prepared for perhaps an especially bad time of it. But, considering the odds, most people are still going to end up okay even if they do get it. The ones who need to be extra careful are those in the high risk groups. Such as say... any population of patients with other conditions who must take medications that suppress their natural immune system.
Going on to describe what to expect is more difficult, since I have not had the swine flu. Those I know who have had it and recuperated, said it was a nasty flu... but nothing particular stood out from other flus they had in the past.
I read an article about a group of infected US Air Force cadets that helps shed light on the timeline for this particular flu and also suggests that Tamiflu may not help shorten the duration of this swine flu:
That particular outbreak offered a wealth of information to medical researchers who are studying the way this flu spreads, and it also sheds light for those of us who just want to know what to expect.
As it happens, the percentage of cadets infected happens to parallel pretty closely the percentage of kids at my daughters school who have become ill. I wonder if that is merely a coincidence or if it makes the numbers more meaningful as a predictor?
Who should get the vaccine?
As a vasculitis patient, you should always get your annual regular flu vaccine, and now you should also get the 2009 H1N1 "swine flu" vaccine.
In the meantime, just know that your condition qualifies you for the dubious honor of fitting into the category of "a person at high risk for complications from flu symptoms."
Look at your most recent blood workup. What is your T cell count? Here is a quote from a medical article concerning flu vaccines. I quote from a section specifically about "Immunocompromised Persons."
The article I quoted also seems to suggest that if your disease is asymptomatic, then your immune system may be a bit stronger than when you have active symptoms, or what vasculitis patients sometimes refer to as a flare. That part is just my interpretation, but I think it makes sense from what I have observed on Meaghan's good days and bad days.
I think this information may also imply that lower doses of chemotherapy and prednisone suppresses your immune system less, so lower doses means you should be better off in terms of fighting off the flu. Common sense is not dead. I wonder if it applies that way?
Yeah, vasculitis patients in the target risk group (ages 8-18) should definitely take extra precautions, and they should be talking to their various doctors about obtaining the special H1N1 vaccine. But that does not mean everyone you know needs it.
Patients over 60 may be at less risk from swine flu than the regular flu:
Activated? Inactivated? What kind of flu vaccine should I get?
For both regular flu vaccine and swine flu vaccine, be sure to get the shot of the dead virus in the arm, not the squirt of live virus in the nose.
What about caregivers? Should they get the H1N1 vaccine?
First off, if you did not get your regular season flu vaccine, go do that ASAP.
Opinions differ about whether caregivers should get all the vaccinations or not. Even if you want to get the H1N1 flu vaccine, you may not be allowed to get the vaccine unless you are also in the high risk group for some other reason.
The logic is not necessarily the same in the mind of public health care professionals as it is in your mind. You think, "Hey, I need protection so I do not pass it on to my loved one." They think, "We only have x doses of this stuff, we need to give it first to people who really really need it."
Depending on your situation, you must decide who to ask, and how aggressively to press the issue. However, do not be surprised when they may tell you that you do not qualify now and you should come back later. I think the answer you get will depend entirely upon who you ask, and how you ask the question. Finger to nose as I give you the heads up to be very nice about it when you do ask.
As a caregiver, I think about the scenario where I get the swine flu and am therefore required to isolate myself from my daughter for the five to seven days it will take my body to beat it off. Then another 24 hours after that, just to make sure I am not contagious. Can I afford to get the flu? When can anyone afford to get the flu?
I cannot answer for others, but I will ask about the vaccine. Then, I am not going to go ape crazy if there are not enough doses and the powers that be tell me to wait. I had my seasonal flu shot, and am drinking fluids like crazy to proactively stay healthy. Water is life.
I am not in a high risk group for flu complications. If I catch H1N1, I will send my immune suppressed daughter packing off to her grandparents for a week and have someone stock me up on cans of chicken soup or whatever so I can have my own private flu party. Been there, done that before.
I once spent New Years Eve in a basement apartment, while the entire extended family and my coworkers celebrated through New Year's Eve and Morning too in the room above my sick bed. That was fun... Not! My one redeeming memory of that was my daughter bringing me all these little doo das from the party. She was about five or so, and kept bringing me food, and party favors, and telling me about what people were doing. That is a cherished memory.
My potential flu situation now is unique in that my daughter is now quite a bit older, and I still have family support. If she were younger, and could not easily be separated from me, then I would change my tune and definitely seek aggressively to be vaccinated for H1N1. As it is now, I will keep asking, but will not get toady about it.
If my daughter gets swine flu, we will be extra careful, and take all possible care to treat it quickly. I also believe that she will also likely catch it early. One of the positive side affects of having vasculitis -- with all its freaky mystery symptoms -- is that patients develop an elevated awareness about their body and its symptoms as compared to people without a chronic illness.
For example, Meaghan logs her vitals twice a day when she takes her meds, so she will catch on if her fever begins to spike even a few points. I choose to believe this,
There is my tip for the day. Go ahead, write it down and tape it to your fridge. I will wait.
How do I avoid the swine flu?
I studied some CDC maps and flowcharts about disease vectors, but I will not bother you with an attempt at interpretation. The bottom line is this is a numbers game and you want to try to stay out of the line of fire. Translation: Stay away from sick people.
If everyone at work is sick and they refuse to go home, then you go home. If they stay home, then don't be a schmuck and go visit them. Let someone who is not immune suppressed take them their chicken soup.
I have always been an avid hand washer. The ABC Song is on my greatest hits list of all time favorites. It was the first song I sang to my newborn daughter, and I hum it when I wash my hands to follow the rule about proper hand washing. It takes time and soap to kill germs. It takes soapy time. So, sing the song and make lots of bubbles.
So, I have a head start. In my family, we wash hands, use the alcohol sanitizer, cough into our sleeve, we stay away from "booger people," and if we think we are sick, we stay home.
The experts declare that those same precautions I grew up with are still the same ones we all need to use now. I guess we must all take them just a bit more seriously this year, but hey, is that a bad thing? I practically accost strangers now when I see them fail to wash their hands. Unsanitary practices are becoming more socially taboo now, and I am not displeased.
If this outbreak convinces the booger people to wash their nasty hands, then I will be grateful... assuming civilization survives the outbreak. Do you think we will?
For more information, you should visit Flu.gov.
Stay safe everyone. And try not to freak out too much.
My final thought is this --
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Chapter - Vasculitis Foundation
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
First my personal disclaimer...
I am NOT an expert. However, I also have these same concerns, so in keeping my ear to the ground I have a discovered a couple of answers I can share with you. Just my perspective and I am sure others may differ, so make up your own minds. You are responsible for you.
Here goes...
What is swine flu?
In case you did not know, there are other variations of H1N1 in the normal annual vaccine, but this new one so called "swine flu" aka "2009 H1N1" aka "" is genetically unique enough to be unaffected by the regular seasonal flu vaccine and so requires special attention.
H1N1 (Swine Flu)[Just so you know, I am not making these links clickable on purpose. To learn more about Swine Flu - Booga Booga (use your imagination to insert dramatic sounds of thunder and lightning crashes here), then you can visit the very clickable link to flu.gov I will give you at the end of this article. I will quote heavily from that site, but the same information is also available from other sources.]
"H1N1 flu is a new influenza virus causing illness in people. It has two genes from flu viruses that normally circulate in pigs in Europe and Asia, plus avian genes and human genes. Scientists call this a “quadruple reassortant” virus."
http://www.flu.gov/individualfamily/about/h1n1/index.html#what
How widespread is the flu pandemic?
The outbreak of H1N1 is very widespread. It is affecting people all over the country. No matter who you are, by now, you probably know people who have it, or who have had it in their family. You can look at the map, but it is pretty dull, since the entire thing is the same color. That means it is everywhere. This is what a pandemic looks like:
CDC - Seasonal Influenza (Flu) - Weekly US Map: Influenza Summary Update
http://www.cdc.gov/flu/weekly/usmap.htm
What happens if I get the swine flu?
What happens if you get swine flu it is you get the flu symptoms. I mean you have had the flu before, right? If you have never had the flu, then perhaps you should write an article about healthy living. See the symptoms:
Symptoms of FluWhat the doctors and reading widely tells me is this swine flu is generally about twice as bad as the regular flu, and about twice as many people as usual will get it. So, if last year two people in ten got the flu, then this year perhaps four people in ten will get sick with the flu, and so on. But, I also understand that not all of those will necessarily get the swine flu, so the using just the numbers to evaluate risk gets complicated.
Seasonal Flu - All types of flu can cause:
* Fever
* Coughing and/or sore throat
* Runny or stuffy nose
* Headaches and/or body aches
* Chills
* Fatigue
H1N1 Flu - Same as seasonal flu, but symptoms may be more severe.
* Fever
* Coughing and/or sore throat
* Runny or stuffy nose
* Headaches and/or body aches
* Chills
* Fatigue
In addition to the above symptoms, a number of H1N1 flu cases reported:
* Vomiting
* Diarrhea"
http://www.flu.gov/individualfamily/about/symptoms/index.html
So, if you normally get off easy, you might still, and if you do get sick, you may notice it more.
If you normally get your ass kicked by the flu, then be prepared for perhaps an especially bad time of it. But, considering the odds, most people are still going to end up okay even if they do get it. The ones who need to be extra careful are those in the high risk groups. Such as say... any population of patients with other conditions who must take medications that suppress their natural immune system.
Going on to describe what to expect is more difficult, since I have not had the swine flu. Those I know who have had it and recuperated, said it was a nasty flu... but nothing particular stood out from other flus they had in the past.
I read an article about a group of infected US Air Force cadets that helps shed light on the timeline for this particular flu and also suggests that Tamiflu may not help shorten the duration of this swine flu:
July 4 swine flu outbreak shows pattern of virus(Print Version)
"July 4 swine flu outbreak shows pattern of virus
URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_90860.html (*this news item will not be available after 01/18/2010)
Reuters Health Information Logo
Tuesday, October 20, 2009
People practice coughing into their sleeves as a way to try to control the spread of the H1N1 swine flu virus, during a meeting for workers at the Maryland Department of Health and Mental Hygiene in Baltimore, September 3, 2009. REUTERS/Jonathan Ernst (UNITED STATES HEALTH)By Maggie Fox, Health and Science Editor
WASHINGTON (Reuters) - More than 100 new cadets at the U.S. Air Force Academy got infected with swine flu at a July 4 barbecue and fireworks display but quick isolation measures got it under control within two weeks, researchers reported on Tuesday.
The outbreak provided a unique opportunity to study the virus closely and Dr. Catherine Takacs Witkop and colleagues say they discovered some surprising things. Among them:
* Nearly a quarter, or 24 percent, of patients still had virus in their noses seven days after getting sick, including 19 percent who had been well for at least 24 hours
* Tamiflu, the drug used to treat influenza, did not help any of the previously healthy young men and women get better any quicker.
* Most cadets were sick for five days or longer
* Eleven percent of the cadets became infected."
http://www.nlm.nih.gov/medlineplus/print/news/fullstory_90860.html
That particular outbreak offered a wealth of information to medical researchers who are studying the way this flu spreads, and it also sheds light for those of us who just want to know what to expect.
As it happens, the percentage of cadets infected happens to parallel pretty closely the percentage of kids at my daughters school who have become ill. I wonder if that is merely a coincidence or if it makes the numbers more meaningful as a predictor?
Who should get the vaccine?
As a vasculitis patient, you should always get your annual regular flu vaccine, and now you should also get the 2009 H1N1 "swine flu" vaccine.
People with Health ConditionsDon't feel sad that they did not mention vasculitis by name. To fix that, wear your vasculitis T-Shirt more often, pass out Vasculitis Foundation (VF) brochures on clinic days (call the VF to get some or ask me), and start making awareness a priority in your every day life. E.g. Try striking up at least one conversation about vasculitis with a new person every day. Wearing VF items is one way to get noticed and inspire questions.
"People with certain health conditions such as asthma, arthritis or lupus, diabetes, cancer, HIV/AIDS, and heart or kidney disease may face special medical challenges during flu season."
http://www.flu.gov/individualfamily/healthconditions/index.html
In the meantime, just know that your condition qualifies you for the dubious honor of fitting into the category of "a person at high risk for complications from flu symptoms."
Look at your most recent blood workup. What is your T cell count? Here is a quote from a medical article concerning flu vaccines. I quote from a section specifically about "Immunocompromised Persons."
Prevention and Control of Seasonal Influenza with VaccinesLooking at the science is like reading Greek to most of us, but the short and sweet of it is the flu vaccine can help you if you are immune compromised or immune suppressed, which is essentially the same thing. Keep in mind research that benefits understanding of cancer and HIV sometimes directly benefits understanding of vasculitis as well. So vote yes to medical research grants when you get the chance. Especially for autoimmune related conditions.
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr58e0724a1.htm
"Immunocompromised PersonsTIV produces adequate antibody concentrations against influenza among vaccinated HIV-infected persons who have minimal AIDS-related symptoms and normal or near-normal CD4+ T-lymphocyte cell counts (136--138). Among persons who have advanced HIV disease and low CD4+ T-lymphocyte cell counts, TIV might not induce protective antibody titers (138,139); a second dose of vaccine does not improve the immune response in these persons (139,140). A randomized, placebo-controlled trial determined that TIV was highly effective in preventing symptomatic, laboratory-confirmed influenza virus infection among HIV-infected persons with a mean of 400 CD4+ T-lymphocyte cells/mm3; however, a limited number of persons with CD4+ T-lymphocyte cell counts of <200>140). A nonrandomized study of HIV-infected persons determined that influenza vaccination was most effective among persons with >100 CD4+ cells and among those with <30,000>53).
On the basis of certain limited studies, immunogenicity for persons with solid organ transplants varies according to transplant type. Among persons with kidney or heart transplants, the proportion who developed seroprotective antibody concentrations was similar or slightly reduced compared with healthy persons (141--143). However, a study among persons with liver transplants indicated reduced immunologic responses to influenza vaccination (144--146), especially if vaccination occurred within the 4 months after the transplant procedure (144)."
The article I quoted also seems to suggest that if your disease is asymptomatic, then your immune system may be a bit stronger than when you have active symptoms, or what vasculitis patients sometimes refer to as a flare. That part is just my interpretation, but I think it makes sense from what I have observed on Meaghan's good days and bad days.
I think this information may also imply that lower doses of chemotherapy and prednisone suppresses your immune system less, so lower doses means you should be better off in terms of fighting off the flu. Common sense is not dead. I wonder if it applies that way?
Yeah, vasculitis patients in the target risk group (ages 8-18) should definitely take extra precautions, and they should be talking to their various doctors about obtaining the special H1N1 vaccine. But that does not mean everyone you know needs it.
Patients over 60 may be at less risk from swine flu than the regular flu:
"CDC laboratory studies have shown that about one-third of adults older than 60 may have antibodies against this virus. It is unknown how much protection may be afforded against H1N1 flu by an existing antibody."In fact, to whip this bugs butt, the more healthy people that get it and beat it, the better off we will all be. I spoke to one emergency room nurse who said that if he did not have an immune suppressed patient in his family, he would get everyone together for one big swine flu party, so they could all hug and kiss and trade boogers to get the swine flu, then camp out and recover together. That way they could grow the antibodies and get on with their lives .
http://www.flu.gov/individualfamily/about/h1n1/index.html
Musing: Would it not be lovely to know a number for your own baseline immune system, and then also know the actual percentage associated with the immune compromise?Obviously we do not get to know our personal "immune factor," and there is no sure way to calculate the percentage of immune suppression. However, if you are in a high risk group for complications from regular flu, then yes, you should seek out both the inactivated regular season flu vaccine and the inactivated H1N1 flu vaccine when it becomes available.
Imagine this statement by a vasculitis patient:
"Say, my healthy immune factor is normally an 85, but I have 23% suppression from the current dosage of methotrexate and prednisone, so my immune system is operating at about 65.55 right now. I am up 1.5 points from last month, so I feel great about that."
Activated? Inactivated? What kind of flu vaccine should I get?
For both regular flu vaccine and swine flu vaccine, be sure to get the shot of the dead virus in the arm, not the squirt of live virus in the nose.
CDC - Seasonal Influenza (Flu) - Key Facts About Seasonal Flu VaccineCaregivers and others living in the same household with an immune suppressed patient should also avoid the live vaccine as it can be contagious to your loved one. You do not want to actually get the disease, even in a mild form, when you are around an immune suppressed patient.
"There are two types of vaccines:
* The "flu shot" — an inactivated vaccine (containing killed virus) that is given with a needle, usually in the arm. The flu shot is approved for use in people older than 6 months, including healthy people and people with chronic medical conditions.
* The nasal-spray flu vaccine — a vaccine made with live, weakened flu viruses that do not cause the flu (sometimes called LAIV for "live attenuated influenza vaccine" or FluMist®). LAIV (FluMist®) is approved for use in healthy* people 2-49 years of age who are not pregnant."
http://www.cdc.gov/flu/protect/keyfacts.htm
What about caregivers? Should they get the H1N1 vaccine?
First off, if you did not get your regular season flu vaccine, go do that ASAP.
Opinions differ about whether caregivers should get all the vaccinations or not. Even if you want to get the H1N1 flu vaccine, you may not be allowed to get the vaccine unless you are also in the high risk group for some other reason.
The logic is not necessarily the same in the mind of public health care professionals as it is in your mind. You think, "Hey, I need protection so I do not pass it on to my loved one." They think, "We only have x doses of this stuff, we need to give it first to people who really really need it."
Depending on your situation, you must decide who to ask, and how aggressively to press the issue. However, do not be surprised when they may tell you that you do not qualify now and you should come back later. I think the answer you get will depend entirely upon who you ask, and how you ask the question. Finger to nose as I give you the heads up to be very nice about it when you do ask.
As a caregiver, I think about the scenario where I get the swine flu and am therefore required to isolate myself from my daughter for the five to seven days it will take my body to beat it off. Then another 24 hours after that, just to make sure I am not contagious. Can I afford to get the flu? When can anyone afford to get the flu?
I cannot answer for others, but I will ask about the vaccine. Then, I am not going to go ape crazy if there are not enough doses and the powers that be tell me to wait. I had my seasonal flu shot, and am drinking fluids like crazy to proactively stay healthy. Water is life.
I am not in a high risk group for flu complications. If I catch H1N1, I will send my immune suppressed daughter packing off to her grandparents for a week and have someone stock me up on cans of chicken soup or whatever so I can have my own private flu party. Been there, done that before.
I once spent New Years Eve in a basement apartment, while the entire extended family and my coworkers celebrated through New Year's Eve and Morning too in the room above my sick bed. That was fun... Not! My one redeeming memory of that was my daughter bringing me all these little doo das from the party. She was about five or so, and kept bringing me food, and party favors, and telling me about what people were doing. That is a cherished memory.
My potential flu situation now is unique in that my daughter is now quite a bit older, and I still have family support. If she were younger, and could not easily be separated from me, then I would change my tune and definitely seek aggressively to be vaccinated for H1N1. As it is now, I will keep asking, but will not get toady about it.
If my daughter gets swine flu, we will be extra careful, and take all possible care to treat it quickly. I also believe that she will also likely catch it early. One of the positive side affects of having vasculitis -- with all its freaky mystery symptoms -- is that patients develop an elevated awareness about their body and its symptoms as compared to people without a chronic illness.
For example, Meaghan logs her vitals twice a day when she takes her meds, so she will catch on if her fever begins to spike even a few points. I choose to believe this,
Catching flu symptoms early will help cure them quickly.
There is my tip for the day. Go ahead, write it down and tape it to your fridge. I will wait.
How do I avoid the swine flu?
I studied some CDC maps and flowcharts about disease vectors, but I will not bother you with an attempt at interpretation. The bottom line is this is a numbers game and you want to try to stay out of the line of fire. Translation: Stay away from sick people.
If everyone at work is sick and they refuse to go home, then you go home. If they stay home, then don't be a schmuck and go visit them. Let someone who is not immune suppressed take them their chicken soup.
I have always been an avid hand washer. The ABC Song is on my greatest hits list of all time favorites. It was the first song I sang to my newborn daughter, and I hum it when I wash my hands to follow the rule about proper hand washing. It takes time and soap to kill germs. It takes soapy time. So, sing the song and make lots of bubbles.
So, I have a head start. In my family, we wash hands, use the alcohol sanitizer, cough into our sleeve, we stay away from "booger people," and if we think we are sick, we stay home.
The experts declare that those same precautions I grew up with are still the same ones we all need to use now. I guess we must all take them just a bit more seriously this year, but hey, is that a bad thing? I practically accost strangers now when I see them fail to wash their hands. Unsanitary practices are becoming more socially taboo now, and I am not displeased.
So, eat right, exercise, drink lots of water, and follow the standard flu season precautions like hand washing and stay away from sick people.
That is as good as it gets folks.
If this outbreak convinces the booger people to wash their nasty hands, then I will be grateful... assuming civilization survives the outbreak. Do you think we will?
For more information, you should visit Flu.gov.
Flu.govLearn all about flu vaccines at the Center for Disease Control (CDC):
"Flu.gov provides comprehensive government-wide information on pandemic influenza and avian influenza for the general public, health and emergency preparedness professionals, policy makers, government and business leaders, school systems, and local communities."
http://www.flu.gov/
CDC - Seasonal Influenza (Flu) - Key Facts About Seasonal Flu VaccineFor information about the International Flu situation, you can go here:
http://www.cdc.gov/flu/protect/keyfacts.htm
WHO - Global Atlas Of Infectious Diseases
"In a single electronic platform, the WHO’s Communicable Disease Global Atlas is bringing together for analysis and comparison standardized data and statistics for infectious diseases at country, regional, and global levels."
http://gamapserver.who.int/GlobalAtlas/home.asp
Stay safe everyone. And try not to freak out too much.
My final thought is this --
If you get sick, and you are not sure what to do, then ask your doctor.
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Chapter - Vasculitis Foundation
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Subscribe to:
Posts (Atom)