IgG levels up, no improvement in symptoms
Diagnosed with Hypogammaglobulinemia after 3 sets of labs showed same results.
IVIG one year out on Asceniv, IgG has increased in last set of bloodwork but symptoms have not improved. They had first 3-4 infusions. Dr wants IgG level to get to over 1000, now at 800 but
Migraines, body and joint pain, sinus, etc. worsening again.
Dosage of Asceniv just increased but only by 3 grams which I understand is too low, normally 5-10 at least.
Dr was worried about renal functions, appreciate real experiences etc
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@525gooze You are worried about your current rheumatologist’s focus on your kidneys and not your other symptoms. Now you’re thinking of changing doctors. Here are links to 2 different organizations that keep records of doctors who specialize in autoimmune diseases.
https://rarediseases.info.nih.gov/. Genetic and Rare Diseases organization
https://rarediseases.org/. National Organization for Rare Disdeases
When you call one of these organizations, you might also ask if the doctor you plan to see is on their list.
Thank you. Like many people, my body presents more challenges the older I get. Having hypogammaglobulinaemia for more than five years and getting IVIG treatment every three weeks has been a literal lifesaver. Recently I have been diagnosed with moderate hip arthritis and am interested in resolving the issue. Speaking with an orthopedic physician yesterday, I was told that hip replacement surgery frequently comes with bacterial infections and that my compromised immunity might impact my ability to have this surgery. I'm just reaching out to see if anyone has any ideas about how serious these infections could be or perhaps other options.
My hubby has IgG4 RD disease and now he has to try and different type of drug because he had and allergic reaction to Rituximab!! I got in to get more information and this Rare disease and and share information