Did You Know?

Now you know! What’s the difference!? A lot, mainly A PI is primary, meaning born with it. HIV is acquired (contagious) after birth. Except when a HIV positive parent passes along the HIV virus to the fetus. It’s still HIV not a PI. Serum testing can confirm

Only available to subscribers! Launch of PI Patient Piracy e-Book Coming Soon.
 Pi is not HIV or AIDS
Now you know! What’s the difference!? A lot, mainly A PI is primary, meaning born with it. HIV is acquired (contagious) after birth. Except when a HIV positive parent passes along the HIV virus to the fetus. It’s still HIV not a PI. Serum testing can confirm.

10 Warning Signs of a Primary Immunodeficiency (PI/CVID)

10 most “common” symptoms that present as symptoms of Primary Immunodeficiency (PI). PIs are complex and manifest differently, severely, and typically with unknown episodes/illnesses that are not as black and white as the warning signs. The warning signs listed are a good starting point for further evaluation.

Loading...

The following information displays the 10 most “common” symptoms that present as symptoms of Primary immunodeficiency (PI). Research tends to agree on these broad “symptoms”. PIs are complex and manifest differently, severely, and typically with unknown episodes/illnesses that are not as black and white as the “Warning Signs”. If one has any 2 of the 10 warning signs, follow-up with the specific blood work described below.

10-Warning-Signs—Illustrated–2-

10-Warning-Signs-2014-jfm
Primary-Immunodeficiencies—Know-the-Warning-Signs

Remember when stated, the 10 Warning Signs are not “black and white”? PIs are rare. Research is still in its infancy, and the Immune System is complex. I have witnessed children with debilitating arthritis and joint conditions, “strange” or “unknown” organ illnesses, enlarged spleens, heart and/or severe organ irregularities, and more. A PI is not a one size fits all. Neither are the comorbidities.
Comorbidites are the result (secondary or caused by) a Primary Immune Deficiency.
How can you confirm a PI? A simple blood test! The AAAI recommends, “An accurate diagnosis can be made through screening tests that measure immunoglobulin (IGg) levels or the number of B cells in the blood.”

I recommend saving (paper format) all serum testing, and filing in a safe place. The reason for saving previous serum or blood work, you can document decreases or increases, of the Immunoglobulin (IGg, IGa, IGm)or WBC (check the Albumin, Globulin, and the Ratios of A/G) of serum tests. This is especially true for children, as the immune system is not considered fully developed at younger ages. Which makes diagnosing a PI in young children more of a challenge. Even when children show definitive symptoms early in life. Another reason it’s nearly impossible to find IGg results 10 years later.
A PI is the umbrella diagnosis for all specific rare diseases that fall under the criteria of a PI. The second “umbrella diagnosis” under PI is Common Variable Immune Deficiency (CVID). CVID symptoms vary widely, and is less understood (as most PIs). The CVID diagnosis is confirmed if the IGg levels are significantly decreased in either IGg and IGa, OR IGg and IGm.

Further serum and clinical testing will involve what is called a, “Vaccine Challenge”. If the “Vaccine Challenge” confirms the inability for the person to create “memory” (B) cells to previous vaccinations, the diagnosis may be CVID. There may be other PI deficiencies, or genetic defects interacting, in addition to CVID diagnosis.

The rarity of a specific PI, or CVID, and diagnosing by medical professionals remains a challenge. Many physicians never see patients with CVID, and are unaware of the disease. It’s imperative to seek a Clinical Immunologist that is familiar with CVID or PIs if the IGg results are abnormal. You can request the immunoglobulin blood work at a primary doctor (get a copy!.

Posted below you will find reference points, of testing, to discuss with your primary/preferred physician.

Physician-Algorithm

When to Consider a PI in .pdf format for (Specialists):
Diagnostic-Algorithm-for-Specialty-Care-Physicians

If one is ultimately diagnosed with a PI, A patients decision of specialists, is a personal, private decision. The decisions involve many factors; Knowledge of the specialists, geographic location, experience, insurance, and your personal preferences.
I do NOT recommend sourcing any specialist from any one entity.

AAAI_1

AAAAI_2

*Disclosure: I am not a medical physician, nor pretend to be one. Consult with a medical physician with any questions, professional knowledge, follow-up and/or advice.

Attributions:
American Academy of Allergy Asthma and Allergy (AAAAI): https://www.aaaai.org/
JMF: http://www.info4pi.org/library/educational-materials/educational-books

***I do NOT endorse, am not employed, and have zero affiliation with the sources of the information presented. The pictorial information are public resources that helps the reader to understand basic warning signs of a PI.

April is Primary Immune Deficiency Awareness Month

year, we were visiting local plasma centers, thanking donors, and participating in the PI Community. When you feel isolated and alone, your entire life with illness and denial from all facets–it was only appropriate that there was a communal “ah-ha” moment where others identified…

Primary Immune Deficiency Awareness Momth is the entire Month of April!

 

Until next time!

IMG_4066

Having any Problems with a Specialty Pharmacy (or otherwise) and on Medicare? Are they demanding payment, supplies, IGG, having you sign a form quaranteeing payment or anything related to an SCIG Infusion? Re: immunoglobulin replacement therapy (IGG) via subcutaneous (SCIG)

difficulties related to billing, supplies, medications, or more, in regard to replacement immunoglobulin therapy

Report any problems if you are On Medicare with a rare disease, need immunoglobulin replacement therapy, igg via subcutaneous (scig)
Report any problems if you are On Medicare with a rare disease, need immunoglobulin replacement therapy, igg via subcutaneous (scig) click on the link below ⬇️⬇️

If experiencing any difficulties related to billing, supplies, medications, or more, in regard to replacement immunoglobulin therapy. Report the difficulty below

Source: Having any Problems with a Specialty Pharmacy (or otherwise)? With demand of payment, supplies, IGG, or anything related to an SCIG Infusion?