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.
i was diagnosed with cvid at the age of 38. Since then I had my fifth child and am awaiting ivig treatments. It seems to be taking forever. Does everyone experience this delay? Is it an insurance issue or something doctor related.
I read your post and did some quick research from the below links. I'm sure you have read up on everything, including - that there is a National Immunodeficiency Network (USIDNET) that was
was established to advance scientific research for your diagnosed condition.
Please see below for a refresher or perhaps, there is something there that might be new to you.
https://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency
https://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency#resources
https://usidnet.org/
With that said - I wanted to reply for two reasons...
1. I am new to this LA - Online Support Group, however since I have been on here - and excuse me for saying so BUT there really isn't much "Support" - at least not proactively from much of the community. Maybe I am just used to AA and the never ending support they offer but I haven't even found an online "Meeting" that we can sign into for group chats, group discussions, counselor advice or even LA Individuals that have "Time" (meaning they have led a life of no lying for years now)
That said - I'm starting to think that "WE" will begin getting out of this forum, what we put into it...
Our time along with our commitment to service and helping others by listening, offering suggestions and in return receiving the same, whenever that in itself is reciproacted. All in all - I really wanted to connect with you simply to let you know that you are not alone :)
2. My Ex graduated from her nursing school as Valedictorian and is currently an ER Nurse. I spent years in the medical device world and have a passion for healthcare all in itself - so between my experience and knowledge along with the 1000's of things me and her used to speak about, the things that she taught me and I believe - I taught her - as well as the countless areas of medicine I have independently researched on my own - I will give you my suggestions below.
First and foremost - if all you are waiting for is an approval to be Rx (prescribed) and given your ICIV drugs - then someone should have told you that MOST LIKELY your insurance is denying the
the prescription. What you should do first thing Thursday, when you read this is call your INSURANCE company and ask them if your ICIV drugs need a prior-auth. If so - then call your Dr. and tell them that you need a prior-authorization from them or you need them to Rx you a cheaper medication - possible a generic brand.
So you know everything - a prior authorization (PA) is a requirement that your physician obtain approval from your health insurance plan to prescribe a specific medication for you. PA is a technique for minimizing costs, wherein benefits are only paid if the medical care has been pre-approved by the insurance company.
This is usually the case for very expensive medications - which is why you might have to have generic Rx given to you. Either way - you will be OK.
Without this PA, your insurance plan may not pay for your medication. Even then, the insurance company – not the doctor – has the final say in the matter. And they can turn you down.
Below - I pasted a link that can educate you further.
https://www.consumeraffairs.com/news/my-pharmacist-says-he-needs-prior-authorization-whats-that-all-about-040615.html
If there is more to the story than just waiting for the ICIV drugs, then see below. I have broken down your condition into a few parts and suggest maybe seeing a specialist for areas of yours that need to be treated. (If you have been diagnosed with gastric cancer or Non-Hodgkin Lymphoma then inbox me and I can speak to you there about those and recommend Top Global Therapeutic Interventionists (Doctors) for them specifically.
Clinical Review:
The data shows that your condition CAN effect your GI Tract (stomach, small and large intestines) as well as your lungs, ears, sinuses and overall - your immune system and specifically your blood cells.
Please note: If you have experiencing, showing symptoms of or prone to having "abnormal bleeding - possibly GI bleeds - then you are most likely deficient in your bloods platelets. Platelets are what help your blood clot.
If you are anemic - then you were probably diagnosed with autoimmune hemolytic anemia - which means that your red blood cells - are being prematurely destroyed. Below is link to educate you on "Blood Basics."
http://www.hematology.org/Patients/Basics/
Ultimately your ICIV will help because it will help rebuild your immune system. By now - you probably know that 90% of cases never know why or what caused you to get this condition - however, it is narrowed down to genetic and environmental.
No real way to tell what has happened environmentally - but genetically - the suspected influences in CVID are believed to be mutations in genes that are involved in the development and function of immune system cells called B cells.
B cells are specialized white blood cells that help protect the body against infection - hence your immune deficiency condition.
Ultimately - your white blood cells have gone through some sort of mutation and the ICIV treatments will help rebuild that. Below is more information for you.
http://emedicine.medscape.com/article/210367-overview
Lastly - I'm not sure WHICH specialty your physician is in - however for your condition - I will INBOX you with the names of specialists handling your body's specific organs.
GI
Pulmonary
Ears, Nose, Throat (Sinuses)
I think that about covers it ... I HOPE THIS HELPS ???
Have a good night and I will say thank you in advance simply because I signed on to the forum tonight with the intention of writing a post and just pouring my fucking soul out into it with the sole objective of complaining about how much I missed hearing my Ex GF say I love you and a TON of other shit - and when I saw your post, I instinctively chose to help you - with some suggestions and I GUESS - to let you know you are are not alone, when in reality - I came online LOOKING for someone to tell me that very same thing !
I guess that's about as Honest as I can get huh?
A JEDI LIE AM I
On a side note, the isolation of this is astounding! I lost a brother in law to colon rectal cancer last year and he was surrounded but unrelenting support. He needed every bit of it! However I share that as a comparison to mu lack of support. I have had nothing but my husband. My parents were consumed with Mike until he passed and now are completely consumed by a sister with a suspected case of MS. I feel that the whole "but you don't look sick" couple with a unusually high pain tolerance and ability to push through anything have caused this. I cannot find a single person nearby with the same thing and have no local support. I appreciate you reaching out and connecting!
God bless you on your journey!