Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Ok I'm going to copy & paste a few of the notes I took which are FOUR pages long. It was an awesome meeting. If anyone wants all four pages, message me with your email and I will send to you!
Insurers are NOT doctors
www.insurersarenotdoctors.org
Take control of your care:
Know your brand & dose
Sign up for mfg assistance program
Document & report infusion related side effects
Register for www.patientnotificationsystem.org
Sign up for www.idfehealthrecord.org
Autoimmune Issues & PIDD Dr. Marc Reidl
Important to build a team of doctors
In CVID - Impaired antibody response despite b cell presence
IN CVID - Normal T cell immunity in 60%
Some of the Autoimmune that happens in CVID - Dermatologic, rheumatologic (Lupus, arthritis), hematologic (ITP, hemolytic gastro, endrocrinologic
Dr. Charlotte Cunningham Rundles sees almost 500 patients, out of her patients:
o 28% autoimmune
o 15 gastro
o 9% - granulomas
Conditions with increased mortality: Gastro, liver disease, lymphoma, chronic lung disease
Can doctors predict issues by immunologic testing? No wait & see & catch it early (Dr. Reidls opinion)
Quality of life survey @ UCLA involving 28 patients: Most serious complication 60% infection, Fatigue 14% -
Diagnostic issues in autoimmunity: Antibody based testing (we dont make antibodies very well, not very accurate in us), ANA/RF usually negative in CVID with autoimmune arthritis AND when we do show an antibody response its from our donor IVIG WE NEED A GOOD TEAM Experienced rheumatologist clinical evaluation is VERY IMPORTANT!
Immunosuppressants there are risks with us additional compromise of immune function (t cells) steroids, methrotrexate, cyclosporine, mycophenolate. Affects ANTIBODIES Rituxan, Azithioprine, Cyclophosphamide, mycophenolate. Targeted therapies TNF inhibitors, cytokine inhibitors (be very careful with infectious risks) MORE treatment issues - splenectomy, high dose ivig (double dose or more may help some autoimmune issues but come with risks such as blood clots), hydroxychloroquine plaquenil
Whats important? early dx, appropriate igg replacement therapy (dose & frequency), regular monitoring *(igg therapy, lung function), knowledge of potential complications (autoimmune & gi issues & assemble a knowledgeable team of docs) LIVE LIFE !!
NEBULIZED ANTIBIOTICS FOR LUNG & SINUS INFECTIONS
Are they effective for lung & sinus infections?
RATIONAL USE spray & nebulized work great for allergies & asthma (concentration @ sites of deposition)
Allow easy administration of antibiotics that otherwise require IM (intramuscular?) or IV
May avoid systemic side effects of oral or injected antibiotics
May avoid selection of resistant microorganisms
Advanced neb technology allows more efficient aerosol
8.9% success rate with good to excellent responses & 300% increase infection free survival (from a marketing website)
BOTTOM LINE NOT proven to be more effective AND its much more expensive ($200-$1000 more than oral), potential thrush (gold standard for clinical studies randomized, double-blind, placebo-controlled trial)
I have a couple of pages of questions from the audience and answers from the expert doctor panel if anyone is interested I will post them here.
Kelli
Insurers are NOT doctors
www.insurersarenotdoctors.org
Take control of your care:
Know your brand & dose
Sign up for mfg assistance program
Document & report infusion related side effects
Register for www.patientnotificationsystem.org
Sign up for www.idfehealthrecord.org
Autoimmune Issues & PIDD Dr. Marc Reidl
Important to build a team of doctors
In CVID - Impaired antibody response despite b cell presence
IN CVID - Normal T cell immunity in 60%
Some of the Autoimmune that happens in CVID - Dermatologic, rheumatologic (Lupus, arthritis), hematologic (ITP, hemolytic gastro, endrocrinologic
Dr. Charlotte Cunningham Rundles sees almost 500 patients, out of her patients:
o 28% autoimmune
o 15 gastro
o 9% - granulomas
Conditions with increased mortality: Gastro, liver disease, lymphoma, chronic lung disease
Can doctors predict issues by immunologic testing? No wait & see & catch it early (Dr. Reidls opinion)
Quality of life survey @ UCLA involving 28 patients: Most serious complication 60% infection, Fatigue 14% -
Diagnostic issues in autoimmunity: Antibody based testing (we dont make antibodies very well, not very accurate in us), ANA/RF usually negative in CVID with autoimmune arthritis AND when we do show an antibody response its from our donor IVIG WE NEED A GOOD TEAM Experienced rheumatologist clinical evaluation is VERY IMPORTANT!
Immunosuppressants there are risks with us additional compromise of immune function (t cells) steroids, methrotrexate, cyclosporine, mycophenolate. Affects ANTIBODIES Rituxan, Azithioprine, Cyclophosphamide, mycophenolate. Targeted therapies TNF inhibitors, cytokine inhibitors (be very careful with infectious risks) MORE treatment issues - splenectomy, high dose ivig (double dose or more may help some autoimmune issues but come with risks such as blood clots), hydroxychloroquine plaquenil
Whats important? early dx, appropriate igg replacement therapy (dose & frequency), regular monitoring *(igg therapy, lung function), knowledge of potential complications (autoimmune & gi issues & assemble a knowledgeable team of docs) LIVE LIFE !!
NEBULIZED ANTIBIOTICS FOR LUNG & SINUS INFECTIONS
Are they effective for lung & sinus infections?
RATIONAL USE spray & nebulized work great for allergies & asthma (concentration @ sites of deposition)
Allow easy administration of antibiotics that otherwise require IM (intramuscular?) or IV
May avoid systemic side effects of oral or injected antibiotics
May avoid selection of resistant microorganisms
Advanced neb technology allows more efficient aerosol
8.9% success rate with good to excellent responses & 300% increase infection free survival (from a marketing website)
BOTTOM LINE NOT proven to be more effective AND its much more expensive ($200-$1000 more than oral), potential thrush (gold standard for clinical studies randomized, double-blind, placebo-controlled trial)
I have a couple of pages of questions from the audience and answers from the expert doctor panel if anyone is interested I will post them here.
Kelli
Thanks for taking the time to attend and also to update us!
Zeph - Until we can figure out an easy central location I will post a separate thread for the Q&A session tonight when I get home from work :)